Was it worth it... Hell yes!

 Greetings,

It's been a while, I know. I have been busy writing for my Patreon page which has been keeping me occupied on the writing front. Not much there on FM to tell you the truth. Mostly stuff about fencing and social stuff, though there are some interesting things about disability considerations, and more coming no doubt. I tend to write what I am interested about. Enough of my waffle, let's get to the point...

Story:
Late May, I went to the Bundaberg Show for four days to help some friends with a demonstration of Renaissance fencing, which if you haven't read my blog before, is the thing that keeps me going. I write, and I fence, this is my life. So this experience resulted in me fencing twice a day, for about half an hour against two friends. Camping on a camp-bed. Oh, yeah, and travelling 5 hours by train to get to the place in the first place.

The weekend after this there was an event I went to, for another four days. More fencing all of the days, well most of them, but I am getting to that. Sleeping on a bunk that was too short for me, and travelling to and from by public transport again, as I am medically-disqualified from driving due to my FM. 

The result:
Fibro-flare. I ended up with my arm in a sling for one of the days of the second event, and not fencing. Oh yeah, and a week's recovery, which I am just coming to the end of as I am speaking. Not to mention desperately needing to go and see my physio.

Things I know:

1. Next year the same two events will happen again.
2. Next year I will likely go to the two same events again, and do it all over again.
3. Next year I will likely have the same result unless my FM is gone (yeah, right), or I am much fitter (maybe).

Conclusion:

Some would say I haven't learnt a thing from my experience because I am willing to do it again. Some would say I should learn to look after myself better. Some would say I shouldn't push myself so hard. I say they are "Nay-sayers."

The only question I have to ask is: Was it worth it? If the title of this article doesn't give you the answer, let me repeat that, "Hell yes!" I had one hell of a lot of fun fencing with my friends at the Bundaberg Show and spending evenings with them chatting. I had a lot of fun fencing with old friends and making new ones at the event that followed the weekend after. 

Momento mori - you will die. Yes, so go out and live while you have the chance. Take life by both hands and squeeze every drop of life out of it; be in every moment. Marcus Aurelius said, "Live every day like it was your last." 

Cheers,

Henry.

Let's Talk About Pain...

Greetings,

Be warned this one is coming completely off the top of my head, so it is likely going to be a rambling discussion of subjects such as Pain Scales and other such things. Further, there will be other such topics of discussion when it comes to pain present here. Quite frankly, you're just going to have to read along to find out. If you want something substantially more structured, and a hell of a lot longer, have a read of the document I wrote. This one does not appear on my Patreon site because I wanted everyone to read it. I might put it up there as a public post, just to get a larger audience to read it.

Like the "Disability Conversation," the "Pain Conversation" makes people uncomfortable. In some instances it is because it results in the infamous "pain comparison" i.e., my pain is worse than yours, or I have experienced worse pain than you have. This comparison of pain is often a point-scoring exercise, rather than an exercise in understanding which is what is needed in a conversation about pain. If we can understand pain we can move toward dealing with pain.

Rather than a "pain comparison," there needs to be empathy between the people in the conversation, to try and understand the pain that the other experiences. The direction of such a conversation should be directed toward ways the pain can be dealt with, how the pain is removed, or how it is shifted so the person can get on with living. This is the important part, ensuring pain does not control our lives, that we don't just exist, that we live.

The Pain Scale in its classic form is a set of numbers from 0 - 10 where each represents the level of pain an individual happens to be in at the time. For chronic pain sufferers this scale is odd, strange even, as this mythical 0, often does not exist for them unless they are unconscious or anesthetised, or in some similar condition where the brain is inactive. Where there is chronic pain, the Pain Scale shifts, it does not shorten, it shifts, or can shift.

If an individual has "background" i.e., permanent pain, at 3, this is their new 0, therefore the 10 in their scale can be 3 steps above 10, and sometimes is due to being "used to pain." In other cases it works in a different way where the scale simply gets shorter. The other numbers are cut off, 3 is the new 0, and 7 is the new 10, because their pain has increased and their ability to cope has reduced.

In my case my Pain Scale is simply f*cked-up. Then again, I have fibromyalgia (FM), so most of my readers should not be surprised if they have been reading my posts. I have background pain all of the time, the level of which floats, depending on the day, weather, and activity. The only time I have 0 level of pain is when I am unconscious, anesthetised, or asleep (with VPAP on and night-time drugs taken). Pain usually wakes me up in the morning.

How do I deal with my "life of pain" as some writer put it? Depends. Some of the pain I can move to the back of my thoughts. I just tell it to go away because I have things to do, I am simply too busy to be in pain. Other times, I save up my "spoons" and blow the lot of them on activities I love, knowing that I am going to pay for the experience. 

Some will claim this is a "boom and bust" lifestyle and it is not good for me. My response is that I am a quality of life, not a quantity of life, sort of guy. I am going to live my life. I am not going to spend it restricting myself because an activity might hurt, or because I know it does, even though I enjoy it.

There will be those who will say, that this is not your way. No, it isn't. This is my way of living and having a life. I live and I do the things that I love. I contribute to society where I can through my activities and through my involvement with other people. I do my best to not let pain get in the way of these activities. 

I will not be bound. I will not be restricted. I will find ways and means. This is my way. I find each struggle and obstacle, not as a hindrance, but as a challenge laid before me. They are a chance for me to overcome these obstacles and struggles, but they are also a chance for me to overcome the greatest challenger of my life, myself. Pain is just another part of me that is a challenge to defeat. Look forward, not backward; look toward the life that is before you. Love your life. AMOR FATI - love your fate. 

Of interest, I went to the Pain Management Clinic (or whatever they want to call themselves this time), I saw the doctor and talked about my medications and so forth. She changed one of my medications, and my GP and I are discussing whether or not we will change another. I saw their psychologist, and her response was you are doing all that we teach, "What are you doing here?" I saw their physiotherapist and told her about what I do, she also said I was doing what I needed, "What are you doing here?" They both reported back to the doctor, and I was shortly thereafter discharged from the clinic over the phone... might have helped me dropping that 88-page monster I had previously indicated. I believe that my understanding of pain is quite complete, but I am always learning.

Cheers,

Henry.

Happy for the Challenge

 Greetings,

I do not post on this blog as much as I have previously, and I probably should. There are things which, I should speak about; which should appear on this blog because they are relevant to me as a person with a disability, but this will come a little later on. This post came about after some thought about my situation, some philosophical thought one could say, but I think it is important that I state it.

To be clear, before I begin this post, I would prefer not to have that list of conditions. I would prefer to be well, and have the concerns of finding "normal" employment. This would have given me access to my dream job, changed a lot of things in my life, and prevented a lot of things that occurred in my history. However, I do not regret any of my history, because it made me the man I am today; without all of that, I would not be presenting the blog that so many readers have enjoyed. Here I state, that I  embrace my fate, I love my life, in the words of Friedrich Nietzsche, amor fati - love your fate, and so I shall.

I am happy for the challenge that fibromyalgia and all my other conditions have presented. If I did not have my disabilities, there would be a long list of things that I would not have done, and would not have known about myself. I will present these things for you to read and to consider.

If I did not have my disabilities: 

I would not have found so much strength. My disabilities forced me to find ways to adapt to the changes in my body. They forced me to find ways to prevail where, by all accounts I should've crawled into a corner and given up. I found this strength within myself, because I had to, and because I went looking for it, because I chose to go looking for it.

I would not have the opportunities I have to write, research, and fence. My conditions have prevented me from getting a "normal" job. They have prevented me from getting the paying version of my dream job. In the same way, because I don't have a "normal" job, I have time to write, I have time to research and I have time to develop my skills in swordplay. More, to choose what I write and research, because I am beholding to no one in this regard.

I would not have the opportunity to choose my path. In the same way as the above, if I was not on the disability pension, I would have to find a job. Likely this would entail "something to pay the bills" rather than doing what I love to do. Because I am on a pension, due to my disabilities, I choose my path, choose the path of an author, fencer and self-publisher.

I would not have the opportunity to enrich my life. Some would think that this is odd due to the lower fiscal situation that disability pensioners find themselves in. I enrich my life through reading, through a greater understanding of the world, through a enriching my mind through reading philosophy and understanding the great minds that came before us. I have the time to enrich my life with knowledge.

I would not have found some of the lovely people I have, nor grown such connections with them. I have a lot of people to be thankful in my life. Without my disability I would not have found these people, and it is not because they are support people, though they all fulfil this role in their own way. No, I have grown friendships as a result of kinship through disability; friend support friends. I have found that there are good hearts out in the world, you just have to find them. I will not name these people, but I hope they know who they are. Understand this when I say, I love you all.

There are twists of fate, or circumstance if you are of a more scientific mind, which occur which seem cruel at the time. They seem to rip and tear at us, they seem to leave us twisted and broken, not the same people who we were before. It is true a person will never be the person who they were before, this is the nature of time; you are not the person you were yesterday. You are not even the person you were before you read this article. The question is always how we treat these situations and their results.

A portion of time arrives, a situation occurs during that portion of time; a person makes a choice during that portion of time. Afterward the person must learn to live with the consequences of that decision. This is life. There are circumstances where there is no choice made by the person, the choice comes afterward, the choice is how the person deals with the aftermath of the situation, here there is still choice and the consequences of that choice, and doing nothing is a choice.

The beginnings of this is being thankful for your life, and I surely am. I have many things to be thankful in my life, those listed above are a short list. Remember, your life could always be worse than it currently is, there is always someone who could claim that they are having a harder time that you. Take what you have of your life and embrace it. Take the challenge of life and live it, and live it well. Be thankful for the challenges, embrace them as a chance to grow.

Cheers, Henry.

Pain... It's All in Your Mind

 Greetings,

My last post was about COVID vaccines and my personal journey through having the vaccine. I will be continuing to have the vaccines, of all kinds, not just the COVID ones because they are good for protecting the body, regardless of their side-effects, and that was some time ago. I simply have not had anything to write about since then, nothing which I thought my readers of this blog would find helpful or useful. Today, I have.

How many times have you been told that your fibromyalgia (FM) is all in your mind? How many times have you been told that your chronic pain was all in your mind? In these instances the individuals were using the statement to pass the buck, to place the blame elsewhere or simply discredit feelings and sensations that you knew you were actually having. I have news... in a way they were right.

Pain does come from the mind, but it does not make it any less real. If you are having problems grasping this concept, I recommend watching any one of the many videos on YouTube by Professor Lorimer Moseley. HERE is one to get you started. He is an Australian who studies pain and its effects on individuals, and how it works, recognised internationally for his work. His research is revealing, and it is most useful to individuals who live with pain every day of their lives. Once you have had a listen to Professor Moseley, I would encourage you to read on and see what this revelation has done for me...

If my pain comes from my mind, then I am in partly responsible for the outcomes of this sensation. This is the case because I have active control of my mind, I am the person who decides what I do with my mind and what I think about. Yes, we all get distracted and we all get led off on our little adventures, but if you can control your mind, you can control your pain. Let me say that again, if you can control your mind, you can control your pain.

This is a skill and like any other skill it takes practise. You can practise through simple things like remaining on a particular topic and not being side-tract when you are thinking about a thing. You can practise by focusing on each individual part of your body and feeling each individual part of your body and then pushing them away. These are practising actions of mindfulness, not in the Buddhist, Dalai Lama, monkish sort of way but in an active form.

If I am actively doing something that I enjoy, my pain levels reduce a lot. I do not feel the pain, because my mind has been taken elsewhere, I am focused on something else. The more that we can find the triggers to these removing our thought patterns away from the pain that we are feeling, the less pain that we will feel. Of course, this works for me. 

I find if I focus on my pain, I end up in a spiral downward which just ends up in more pain. If I can stop the spiral, by distracting myself from the pain, by doing something active, or even something else that I have to focus on, the pain reduces and the spiral doesn't get a chance to start.

Why would I bother to seek out methods such as these when there are drugs available to dull my pain? I have more of a fear of drug-dependency than I do of pain. I would rather save the drugs for some time when I really need them than use them for chronic pain conditions. I would also rather have pain than have the fog associated with having enough drugs in my system to dull my pain. I have been here before and I did not like it at all. I don't want to be hooked on that sensation a person gets when the drugs hit their system. I would rather have the pain and feel alive than be pain-free and in some drugged up, semi-comatose, unable to think, state.

The problem is that our bodies get used to the presence of drugs, so they get dependent on their presence, and they get tolerant of them, so they have to be increased. I have topped out one of mine, so my doctor has had to move on to another one which will work with the one that I am using. This is the reason that I am doing my best to find other ways of dealing with my pain. Activity helps, especially if it is an activity that you enjoy, because you will want to go out and do it. Research, and work on your mind helps, but it is all hard work. The alternative, I believe, is worse.

Cheers,

Henry.

COVID Vaccine: My Second Pfizer Shot

 Greetings,

I wrote a little while ago about having my first COVID-19 vaccine and having the Pfizer vaccine to be precise and what I went through as some information for those with fibromyalgia (FM), so they might be aware of some side-effects. I also wrote it because even through all that I knew that I was doing the right thing and that was the most important thing. Well, with the prescribed weeks later, I went and had my second shot of the Pfizer vaccine, knowing full well what the side-effects would be.

The advantage that I had was that I was prepared for these side-effects so the doctor and I were able to mitigate some of the effects by increasing some of my medications for the period of the side-effects. This helped a bit and reduced some of the effect. I am not going to go and detail the day-by-day side-effects that I experienced after this second shot, I don't think it will serve any purpose. The side-effects were much the same, only slightly reduced.

In about five months I will be eligible to have my booster shot, and I will be having that too. Yes, it will no doubt result in another week full of side-effects, but that is not the point. Yes, it will result in me being inconvenienced for another week, but that is not the point. I will decrease my chances of being infected by COVID-19; I will also decrease my chances of passing the same on to others; and that is the point.

Much like wearing a mask in public where we can't social distance or we are asked to by our government, or public health authorities. We do this not only for our own benefit, but for the benefit of those around us. This is something that has often been lost in our current era, we do not think of others very often, we do not take our heads out of our little worlds to think of how our actions affect others, or how our inactions affect others. 

If anything, I hope that this pandemic teaches us to be kind to our neighbours, to consider our actions and what effect they will have on our neighbours. I know they are high hopes, but you have to start somewhere.

Cheers, 

Henry.

... But That's Not Me

 Greetings,

Funny thing, this started as a Facebook (FB) post, but it grew into something more worthy of a post on my blog, and I have posted so infrequently on this blog that I decided that it was time that I started again, at least on a more semi-regular basis. Before I get to the nitty-gritty of the current situation, I had my second Pfizer shot, with much the same resulting side-effects as the last, i.e. a week-long flare of my fibromyalgia (FM) symptoms. You can read the previous post if you want details. I still think it is worth it; COVID and the potential long-term side-effects would be much worse. Anyway, enough of that stuff, it's not actually why I am here today.

Like this blog I occasionally post some things on FB to raise awareness about FM, these are primarily images which I share from sites across FB. These are not cries for sympathy, I don't want sympathy it does me no good whatsoever. Sympathy is a salve for the individual who gives it. It makes them feel better. Sure it makes the other person feel better for a little while, but it is like giving painkillers to fix a broken spine. They take the pain away briefly, but the spine is still broken; and the painkillers become addictive and begin losing their effect after a while.

Empathy is a little more useful, though I find it difficult to understand how a person who does not have FM can empathise with a person who does. "Empathy is the capacity to understand or feel what another person is experiencing from within their frame of reference, that is, the capacity to place oneself in another's position." as defined by Wikipedia. How can a person "feel" what the person with FM feels every day, what they experience? Empathy is a long stretch in my opinion. Understanding, now that is a possibility, even if it is described through the particular lens of the individual, that will do nicely. Understand that we have our good days and our bad days. Understand that the symptoms are annoyingly random. Understand that it is like a roulette wheel as to whether tomorrow will be a good day or not. Further, understand that people react differently.

Returning to my original position, I post the images because they often do a good job explaining some of what I experience, however I dislike reading many of the comments because they do not relate to me. It's one of the reasons that I have not joined a support group in the decades since I was diagnosed. I have run into people who have FM and there tends to be two types. 

The first type allows their condition to rule their lives. It is the explanation for the reason why they don't do things. FM is the reason they don't or can't go out and do things. FM has ruined their lives because their body will not allow them to do things, because it hurts. They do things and it causes them pain so they don't do them anymore. They focus on the negative.

The second type understands the effect the condition has had on their lives, but pushes against those boundaries every chance they get. They go out and do things regardless of their condition; in some cases deliberately in spite of their condition. They push they pain to one side so they can go out and do things, and find that while they are doing them they don't notice the pain. They push their limits, and pay for it, and then go out and push their limits again, and again. 

The problem is that most of the responses to the images that I find are from the first type, and I am certainly from the second type. I want to find out what I can do, and keep on doing it. I don't want the spiral of ever-reducing capacity. I want to get out there and keep doing things.

I thought about responding to the comments, to show these people that there is hope, but you have to find it within yourselves rather than go looking for it elsewhere. I thought about arguing it from a philosophical point of view, pointing them toward the Stoics for a better way to live. The Roman emperor, and Stoic, Marcus Aurelius suffered from chronic illness. His Meditations as we know it now has passages about pain and illness, because he suffered and responded. I thought about even pointing them toward Nietzsche who also suffered from chronic illness throughout his life, pointing them toward his "will to power", but I wonder what the responses would be. 

Instead, I write to you, my dear reader, explaining how these people are not me. They do not represent everyone with FM; we have not all lost hope; some of us do not live our lives in little balls of pain shutting the world out complaining about all the pain, we have lives to live. The only way to change your life is for you to change your life. Take a different perspective. Change your thought patterns. Don't wait for the miracle cure that may or may not happen. This is your life, go out and live it.

Cheers,

Henry.

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The COVID Vaccine: My First Pfizer Shot

Greetings,

There are somethings that must be made clear before you begin reading the following entry. First, I apologise that it has been so long that I have made an entry on this blog, I just have not found anything which I thought was relevant to write. Second, this was my first Pfizer vaccine shot against the COVID-19 virus and I went in with open eyes. Third, I have multiple co-morbid conditions which likely added to the symptoms which you will read below. Fourth, this is intended to educate, not scare, any of my fellow fibro-fighters in regard to the Pfizer vaccine. Finally, and most importantly, I will be having the second and booster shots when they become available. One could almost term me as a pro-vaxxer, if I could afford it they could line up all the vaccinations and I would have them all.

These records come from my Facebook page, made so I could record them and post them here, no I can explain the situation...

"Pfizer vax No.1 done... about 12hrs ago, certainly not looking like I am going to be up to much this week if symptoms persist." 

In preparation for my vaccine, I cleared out my entire week because I did not know how my fibromyalgia (FM) was going to react with the Pfizer vaccine. I had heard varied reports from people with various chronic health conditions. By this time I was feeling a little uncomfortable, nothing new after being out all day really. I seemed to have missed the +24hr mark, obviously I was busy with other things, or just plain forgot. The reports continue...

"Pfizer +48hrs: general aches, FM not playing well at all, headache, joints not happy, costochondritis present; a little warm, but not feverish."

By this time the vaccine was truly in my system. I was beginning to feel the real symptoms of the side-effects. "Flu-like symptoms" is how they describe it, some "aches and pains" is a further comment. What it really means is it wakes all your FM symptoms and turns them all on. This was actually just the side-effects warming up.

"Pfizer shot+72hrs: fibro is still in "flare mode"; last night right leg froze up and made walking "interesting"; have a headache which is almost constant and has been so since 6hrs+; pick a joint it's probably either stiff, painful, or waiting it's turn; focus is varied, "fibro-fog" is having a party unless I focus hard, which exacerbates headache; pottering along, doing what I can, not expecting much.

Still going ahead with second, regardless."

By this time I was experiencing side-effects which I can only describe as what I experienced during some of my worst fibro-flares. You can see the physical and mental effects that it was having on me just by the description. I spent most of the time relaxing as much as possible, like I do when my FM is flaring. You will also note my usual stubbornness present in regard to having the second shot, even with these symptoms present. I would rather go through all of this all over again, than have the higher chance of getting COVID and the possible after-effects of that. Moving on with the story...

 

"Pfizer +96hrs (4 days): headache is still there; "fibro flare" is beginning to subside; walking is becoming less painful, joints less painful, but still present; overall some improvement, hoping to be "sociable" by tomorrow."

The worst part of it was over by now. There was still some pain, but I was certainly more mobile than I was before, even 12hrs before I made the report. I mean I know how stubborn I am, but this was actual improvement. I was still unstable, still had a bit of lingering "fibro-fog" but it was certainly improving by this stage, and looking back, I have certainly been sicker.

"Pfizer update +6 days: Almost back to "normal" (whatever the hell that means). I still have lymph glands which are up. I still have some muscle soreness and achy joints (but much less than it has been). I still have the headache, but it is background noise. Thank goodness "fibro-fog" has almost reduced down to normal levels, that has been the worst in my opinion. Screw the pain, screw the movement limitation, the "not being able to think properly" thing sucks the worst."

The last report that I posted appears above. I did not bother with another report a week later, which was yesterday actually. I am mostly back to "normal" I am now just living with the consequences of being inactive for a week. My body doesn't like moving too much my brain is back to its usual self, though I do have a niggling occasional headache, which could be explained by my messed up neck. I definitely believe that the fibro-fog was the worst. If I could've just sat and watched or wrote, or played games, that would've been alright, but the fog made it hard along with the headache.

In a nut-shell, I've had fibro-flares which were worse, some which were brought on by other medications, some which were brought on by completely external sources. I will be getting the second Pfizer shot, I know that there is the potential for a repeat, or worse, of these symptoms, but in the end it will be worth it. As Nietzsche said, "What does not destroy me, makes me stronger.” The Stoics, through the emperor Marcus Aurelius, who had his own chronic health issues, had a similar approach in that everything is fuel for the fire to make us greater.

Talk with your health professional, see which COVID vaccination is right for you. Prepare for the possible side-effects by reading about them, informing yourself as you would anything else, but ask your health professional about anything you are worried about. Do not fear the possible outcomes. Know that you are not only doing this for yourself, but your loved ones, and those who cannot have the vaccine. This is not just a question of being good to your loved ones, but everyone you meet, being a good human being. I will leave you with this comment from the aforementioned Marcus Aurelius to consider.

"Have I done something for the common good? Then I too have benefited. Have this thought always ready to hand: and no stopping." Marcus Aurelius - Meditations

I hope that what I have said will help you, not inspire you, but help you. I wish you a pain-free day.

Cheers,

Henry.

AMOR FATI - Love Your Fate

 Greetings,

So I have been studying a little Stoicism of late, actually I have been reading and learning about Stoicism quite a bit of late as it suits my method of thinking and I wanted to share a thought about one of Stoicism's philosophical tenets. I think that this will be of assistance to some, especially those who have chronic pain, or other chronic health issues, like fibromyalgia (FM) which is what much of this blog is about, my travels through life with FM. To explain how this philosophical tenet works I will be telling a story, my story.

AMOR FATI - Love Your Fate

In the far past days of  my childhood, I had the urge to serve, I did not know this at the time, but when I look back at it this is what the urge was. My first choice of occupation was to join the military forces, my first choice for this was to join the army, go to the Australian Defence Force Academy, become an officer, lead men, and so forth. Of course, this dream was shattered when I found out that I would not pass the medical examination, I was a chronic asthmatic. So even if I was as fit and smart as the rest, No getting in there.

My second plan, once again was to serve. I wrote to my great-uncle who was an Deputy Commissioner in the Queensland Police Service whether there was a chance I could become a police officer, even being a chronic asthmatic. He wrote back to me telling me that I could but before I went for the medical, I would have to have two years completely clear of asthma. Well, that was not going to happen in a hurry, so I shelved that idea.

When we were asked in school what we wanted to be when we grew up, needless to say I had already had a good, long, think about where I was going, and my limitations. This boy wanted to be a fireman, that girl wanted to be a nurse, I decided that I wanted to be an historian. So, from them on any chance I got I would study history of what ever I could get my hands on.

The same pattern followed through my High School years, my eyes were firmly set on my goal. I had a look at other options on the way. I even dabbled a little with the idea of being a shot firer, the person who sets and detonates explosives at mines, but I was clearly going for my goal. Well, there were some stumbles, like failing my first attempt at university, and spending three-and-a-half years unemployed.

During that time of unemployment, with too high a skill level, and no qualifications, that I was put in an office traineeship. Seemed like an idea to tide me over until university places and funding was available. Then I developed pain in my fingers and wrists, to the point that I could not write or even make a sandwich. Here is where FM loomed its ugly head, of course it was misdiagnosed for about two-and-a-half years, meaning that I ended up on anti-inflammatories, which damaged the lining of my stomach, so now I cannot take them at all.

Eventually, I got a diagnosis from a specialist at the local hospital. End of the traineeship, not much good having an employee who has to take random days off because his body doesn't work. I applied for a disability pension. It was rejected and told that it would all clear up in six weeks (I wish). More job search without luck. Eventually I ended up going back to university to do the degree that would set me on the path to becoming an historian.

The Disability Support Officer at the university was great, she helped me manage my degree so I could handle the work. I was given extra time for my examinations, a laptop to type on rather than write. My lecturers were also really understanding, I was able to get extensions on my assignments when I needed them, and they understood my random absences. Only issues throughout the whole thing was dealing with the government to remain funded, and this happened almost every year.

So, you'd think a person with a degree is more easily able to find work, right? Nope. Now you are too over qualified, or under-qualified, you are sandwiched in between where you need to be. I spent a year or so being bounced around again, not finding suitable employment due to my FM. So, I went back to university to do Honours. Finished that, now I am technically qualified in my field. Of course, the offerings for historians are like hen's teeth, they do exist, just very rare.

During my last years of High School I had joined a medieval and Renaissance recreation group the SCA, and was enjoying myself recreating bits of history. If you enjoy studying history, what could be better than living bits of it? This enjoyment did not abate all the way through these ups and downs.

Along the way I had learned how to use a sword called the rapier, now think of a weapon which is the grand-father of the modern epee, and you are on the right sort of track. This is a different sort of fencing: it is not restricted to a strip, it is fought often on a marked out field called a list; unlike sport fencing, you can use your other hand sometimes even to carry another weapon; this form of fencing is based on treatises from the 13th to the 17th centuries. I was developing quite a bit of skill along the way.

To cut a much longer story short, I do still study bits of history, but it is usually something to do with fencing. I fence more than most people, and I actually teach people how to fence. I actually did get on the Disability Pension, so by default I am being paid by the government to research history, and teach people how to fence. I am also writing and publishing some books, which I never thought was going to happen. All in all I am happy with the way things have turned out. This is because I have embraced the way things have turned out rather than resented it. Yes, it has taken me longer than most to get here, but I am more comfortable with what I am doing than most are with what they are.

AMOR FATI - Love Your Fate means to love your life the way it is, not resenting things that did not happen and not hoping for things that might not happen. It is accepting things the way they are and embracing them with all your heart. I accept that my conditions impede my progress, but without them I would not be in the position that I am in now, more in control of what I do during the day than most, more in control of my career than most. Take your life and live it to its fullest.

AMOR FATI - Love Your Fate

A small side note, you will note that I have used lots of Wikipedia links. It is because I believe it is a good resource and worthy of use. It now has the research of many more respected resources as you will find in the bibliographies of many of the articles and I encourage my readers to donate to the Wikipedia to keep this valuable resource alive and free for all.

2019... An Interesting Year

Greetings,

Coming to the end of the year, I thought I would have a look back on the year at some highlights. I will be having a look at these from a neutral perspective, examining things as they were. This means that I will be acknowledging the positives and the negatives to keep things even, but in the end, I think it will turn out to be... another year completed. (Be warned this is a little long.)

Book Published

Well 2019, you have been an interesting year to say the least. There have been some ups and some downs throughout you on a personal scale, and on a broader scale. Let's see if we can do this in relatively chronological order to examine things evenly, it will also see if I can actually remember everything that happened.

I can now claim myself as an author as I have published my first book. I set up a publishing business, Sword and Book Enterprises, in late 2018 to achieve this, so the book was self-published. The book was officially published on 15 Marsh 2019, the book, Un-blogged: A Fencer's Ramblings, is available on-line from all sorts of places including Amazon and Book Depository. There are all sorts of people who helped me with this but, I cannot say "Thank you" enough to Jen Fraser, and my sister Julia Robertson, for their assistance.

On the same day as it was published I had a book launch at my place. I sent out a whole stack of invitations, via Facebook. Even had a Facebook Event set up for it. Of course, on that evening it decided to have torrential rain, so it was almost washed out. There was a small amount of people who were still able to attend and it was, a success pretty much. Hopefully, all things going according to plan, I hope to have two more books out in 2020.

Purple Challenge

Last year I was unable to participate completely in Relay for Life because my health was simply not up to it. I was very disappointed about this. So I decided that I would do something that I could do to raise funds for a good charity, hence My Purple Challenge was envisioned. The object of this was to raise funds and awareness for the Princess Alexandra Hospital Research Foundation, who does research into cancer and other areas.

The Purple Challenge, which I have spoken about before was, for the entire month of May, I would bout people for $1 per bout. The restrictions were that they had to be from a recognised fencing group, and that I had to be at the practice where they would fence me, and there was time to have the bout. In the end, I raised $100 which was more than I expected, so I rated it as a success. I will hopefully be doing a repeat of this next year, with more advertising so I can get more people involved.

Elevation

I am a member of the Society for Creative Anachronisms (SCA). Which is a world-wide organisation that recreates the Medieval and Renaissance periods. The link, above, is to the Kingdom of Lochac which is Australia and New Zealand. I have been a member of this organisation since 1992. We recreate all the good bits of this period. There is an award structure which awards various endeavours which people participate in, and the structure has various levels. The highest being the Peerage.

On 8 June I was elevated to the Order of the Laurel for fencing research and interpretation. I seem to have a pattern of having "big" moments in the SCA coinciding with wet weather, luckily on the day, the weather was "mostly" fine. The ceremony was held during a dry period of the weekend. This was recognition of about 2 decades worth of work. My prime area is Elizabethan fencing manuals, so Vincentio Saviolo (my favourite) and Giacomo di Grassi being the two prime Italianate manuals of the period. In some ways, I am still coming to terms with this recognition because this research is just "what I do".

Fencing Fest

Fencing Fest XVI was held in the beginning of August. It was, once again, a success. This is an SCA event held each year to get all of the historical fencers of the group together to share their knowledge and cross blades with one another. I started it because there was no dedicated event for this to happen. It has since been copied by various people and used to create other events.

I have been Steward (person in charge) of about a dozen Fencing Fests. They are relatively easy to run, especially when you have the right crew and support. My crew has always been amazing and very supportive. I have decided that this was my last one as Steward, as it is time for someone else to have a go and put their mark on the event. Time for me to move on to something different. Of course, I will always be around to give advice.

Swordplay 2019

I attended Swordplay for the Saturday and Sunday. I helped out a little with some stuff, but mostly spectated and caught up with friends that I do not get to see all that often. I would have been helping with safety except I was unable to. The Thursday before the event I had a liver biopsy, which meant that I was in no condition to be doing anything strenuous. I took it easy. This also meant that I missed several workshops that I wanted to attend, but the liver biopsy was substantially more important. Simply, it had to be done. It was the first time that I had attended a Swordplay with out an official role, an interesting experience.

Relay for Life

Relay for Life is rather special for me. My family has been touched by cancer more often than it probably should have. I have already mentioned that I missed out on participating in 2018. Luckily, I was able to fully participate in this year's event. Rather than walking around the track, as the other teams did, ours fenced for the time that was allocated. 17 hours of fencing, needless to say that we did not all do it at once, but had someone fencing all of the time.

This was an interesting, emotional, and fulfilling experience. It rained, and was foggy, which means there was some serious cleaning of weapons and equipment required afterward, but that also meant it kept things mostly cool which was great for fencing. I wish that I could be in as reasonable condition all of the time. I managed my energy levels by choosing my bouts, a little selfish, but worked out I think. Of course, after the event my fibromyalgia made me pay for it afterward, but I still felt it was worth the experience.

Retirement

Not long after Relay for Life, in fact the day after, I retired as the Head of the School of Historical Defense Arts (SHDA). This is something which I have probably mentioned in a post somewhere in one of my blogs, not necessarily this one. I passed on this duty to one of my students, James Wran, who I believe will do an able job of this position. This was not an easy decision to make, but was one that I had to make for my own good.

I have been Head of SHDA since the beginning some 6 years ago, and I felt it was time that someone else took over. I am not going to go into the specific reasons as it is not appropriate here. Needless to say, this is a decision that I made for my physical and mental health. The result of this has been that I am much more relaxed, and also much more focused. I am now teaching individual sessions rather than group ones, allowing better focus on the student. This is what I do better at anyway.

Letting go was a hard thing to do, but it was something that I needed to do. I still have some ties to the School as I still maintain my rank in terms of examination and obviously knowledge, and will always be around to advise should it be required. I may even be convinced to attend a class every now and then to see how things are going.

Health

Health-wise this year has been pretty good, osteoporosis has gone, the end of it much so. My respiratory specialist did not want to see me until next year, so a yearly visit. This means that my lungs are well on their way to clearing themselves up. Obviously my results from the breathing tests have been really good.

The result of the aforementioned liver biopsy was that the liver was clear, so no sarcoidosis present in it, and the fat content that was present was non-reactive. This means that the liver has gone and cleared up completely. This makes me really happy, so my methotrexate was reduced to a maintenance dose. Hopefully there will be some good news sometime in the new year that it can be removed altogether, which would appeal to me.

On the other side of things, my fibromyalgia is being its usual unpredictable, annoying self. Only time I can predict that something is going to happen with it is when I do something strenuous, then I know I am going to pay for it. Other than that, it is the usual roulette wheel of random pain annoyance.

Just to go on top of this the greatest annoyance is my neck and my left arm. The neck is pushing on some nerves which is giving the expected pain, so sore and stiff neck. This is a problem which I have been doing some exercises for and should have taken to the physio by now, so partially my fault. The left arm was thought to be connected to the neck but the nerve is being pressed on the wrong side.

I am getting nerve pain down the left arm affecting some fingers as well, have been for an extended period of time. "It is not the neck because  the nerve is pressing on the wrong side." or so I keep getting told. I think that the FM is playing silly buggers and messing up the signals, but what do I know. It is not mechanical as there is no blocking or pinching. This is a real mystery issue as the doctor has checked pretty much everything. So, looks like I am carrying this one into 2020, but all in all I am doing better than I have been.

Overall

I have not mentioned arguments. I have not mentioned fights with my wife. I have not mentioned a thousand and one annoyances, like the Australian Prime Minister being a complete d*ck, and taking the nation down paths which it should not go. These are things that I have either gotten past, forgotten about, or decided that they are issues which cannot be solved by me, at least alone. So they have not appeared in this summary of the year. I also did not mention my explorations into philosophy which have taken up quite a bit of my time and been very fulfilling. I wanted to keep things a little upbeat and focus on events, trying to end each part with a positive.

Overall, even taking into account the little annoyances, and the bigger ones, 2019 has been a pretty good year. I have made some real achievements and been recognised for others which I have been making over an extended period of time. It has been a year of changes, where I have had to make the changes in my life, rather than letting things change them for me, this has been really fulfilling and empowering. I will hold on to this power and use it in the future.

Take things as they are, without interpretation and you will find that things are not as bad as you think they are. Make the changes yourself and you will find more power than you ever realised that you had.

... and Now for the Good News

Greetings,

The last couple of months have been quite interesting for me in many different ways. I have had some medical appointments which have had some surprisingly positive results, and some changes in my life which were necessary. So I figured that I needed to bring you all up to speed on what's going on.

Medical

On the fibromyalgia (FM) front, not much has changed, but there are no surprises there. I have my good days and I have my not so good days. I have found real pleasure in the good days, and have found things to do during the not so good days which have made them "not so good" rather than bad. I have finally started listening to my body, and doing what it needs... for the most part. I still push things a little hard, but that is just in my nature.

I saw my respiratory specialist earlier in the year and my results came back so positive that she does not want to see me for 12 months. It seems that I aced my breathing tests. I am putting this down to the retreat of my sarcoidosis and also my somewhat increased activity levels in the preceding months. Nothing like forcing your body to do things to make your body work and adapt. The bushfires of late have not helped things, nor did my short stint with a chest infection, but they are merely lumps in the road in comparison.

I went and saw my hepatologist as well, my liver function tests have been "off" for ages, mostly due to sarcoidosis in my liver, but also due to some of my medications. So off for a liver biopsy I went. This was an uncomfortable experience I can tell you, but necessary. It made my FM flare up for about a month afterward, but turned out to be worth it in the end. The results came back... no sarcoidosis present in the liver. I am now on a "maintenance" dose of methotrexate to keep things going, and to prevent the sarcoidosis from returning. The hepatologist is also my gastroenterologist. I have been having a little issue with my bowels... off for another test. Still waiting for that one, not a huge thing, just another annoyance.

Today I saw my endocrinologist for the results of my Body Mass Density (BMD) scan to see how my osteoporosis is going, and also to check on my cortisol levels. Well, the cortisol levels are still on the low side so I will be off to see him again in six months, no change there. On the other hand, I can pretty much write off osteoporosis as a current diagnosis, my bones are in full recovery. A very positive result there.

Life Stuff

On the 19th - 20th October I participated in the Brisbane 2019 Relay for Life for the Cancer Council of Queensland which is designed to raise money and awareness about cancer. Most of the teams walked or jogged around a school oval for 17 hours. My team, Brisbane HEMA Teams Unite fenced for the full amount of time. It was a really fulfilling experience. The event raised over $62,000 which will go to cancer research and assisting cancer patients. This was a real test for my FM having to stay up all night and also participating in the activities, but I made it all the way to the end.

About six years ago I started the School of Historical Defense Arts (SHDA) and it has been going along ever since. There had been some administrative issues within the SHDA which were beginning to affect my mental health so I removed myself from administrative matters earlier on in the year, so I could focus on training the students and elements of the curriculum. These are the things that I am good at and have had the most experience with. Things had not improved, and I noted other areas I was uncomfortable with, so as of month ago I retired from the SHDA as Head of School. I have since been performing individual training. This was not an easy decision but one that I had to make for my own mental health.

In June I was elevated in the Society for Creative Anachronisms (SCA) to the Order of the Laurel for fencing research and interpretation. When I was asked, it was a bit of a shock to me. This is the highest award in the SCA for Arts and Sciences. The elevation ceremony went well. I have found that if you find something that you are passionate about and you just do it for the love of it, things will work out well for you. I truly never was interested in awards, I was always interested in the things which I was passionate about, and that others were to. Seek what you love and do it because you love it, and for no other reason.

It has been an interesting time of the past six months or so. I have been writing still, my blogs, and also various projects. I am coming to the end of one so I will have another book published next year sometime. Hopefully, there may even be a second book self-published, which I have been working on for the past couple of years. Things have been busy, the year has gone like a whirlwind, there have been a lot of positives and some negatives along the way. I think that is about it... I have probably forgotten something, but that will do for now.

Cheers,

Henry.

The List: I am here.

Greetings,

So people often ask me how I am doing and what's going on with my health. I usually give the short answer that "I am fine." or that "I am doing OK." For the most part, at that point in time when they ask it is mostly the truth. I don't usually tell all of the truth because it would take too long and would feel too much like complaining in my books and I just don't like doing that. I tell people for empathy not sympathy, I tell people for explanation of what's going on and not much more.

Just for a change I figure I will give some detail as to what's going on with me and give "the list" of various bits and pieces which are going on with me at the moment, and I would not be surprised if I have missed some in the process of making this list. What will be noted is that some of these issues are a daily issue for me and some of them are just irritations which emerge to annoy me every now and then.

1. Fibromyalgia (FM)
No surprises here. I would not be writing this blog if it was not for this condition. It is the one which causes the most issues most of the time. All of the issues impact upon this one and this one impacts upon all of the others. If it relates to pain it can be related back to FM either making it worse or better, usually worse.

2. Sarcoidosis
Update: As of late 2019 this is gone. No presence of it found in my liver as of last scan. Lungs seem to be relatively clear as well.

3. Osteoporosis
Update: As of late 2019 this is gone. The last Body Mass Density Scan said everything is back to normal.

4. Adrenal Suppression
Our good friend prednisone also caused adrenal suppression meaning that my adrenal glands are a little slow to respond to infections. The other symptoms of this one are tiredness, abdominal pain, low blood sugar and other irritations.

5. Coccydynia
"Tailbone" pain. Seems that somewhere in my exciting childhood I did some damage to my coccyx. The result is that I have issues with sitting for an extended period of time, and also rising from a seated position. There are lots of nerves which are connected to this area.

Update: after waiting on the public health system for a period of time, I finally got a coccygectomy, i.e. they removed the offending broken tailbone on 8 September 2022. I am gradually improving, some of the tailbone pain remains, but nerves are finickity things in their healing process. I am optimistic that I will eventually be able to wipe this one out as well.

6. Neck (c5-c7)
This one is a real issue as I get numbness in my fingers on both sides, though for some reason my left is definitely worse than my right. The pressure here seems to be sitting on a nerve connected to my elbow, which is not helpful, though the scans say that it should be affecting my right not my left. Probably the FM screwing things up again.

7. Gastro Oesophageal reflux disease (GORD) and Irritable Bowel Syndrome (IBS)
Lots of fun with eating and digesting of foods. I have been on various different diets to attempt to improve the situation with these two, they help mildly but not so much as how much I enjoy eating what I like. The IBS is also very much connected to FM as well which is not very helpful. The GORD is also related to stress, and with this list there is no surprise that I have a little issue with stress. Not to mention that FM causes issues with swallowing.

8. OSA (Obstructive Sleep Apnoea) and CSA (Central Sleep Apnoea)
Most people will be familiar with OSA where the soft palate of the mouth obstructs the breathing passage causing the person to stop breathing, and also causing snoring. CSA is a little more interesting, in this case the lungs just decide that they are not going to work and just simply stop working. The normal CPAP machine will not help with CSA, thus I have a special machine to deal with it which has variable pressure.

9. Plantar Facitis
Seems that I have been walking too much. So now I have special inner-soles for my shoes to stop my feet hurting so much because I won't stop walking. Besides it is my main mode of transport.

10. Peripheral Neuropathy
Another reason for my feet to hurt, I have almost no doubt that this has been caused by the FM indirectly or by my Neck or some other similar nerve-effect. In any case the feet are irritatingly sore and usually for no reason.

11. Migraine
These are finally under control thanks to various medications. I am very diligent in taking the medications which control these because I sure know when I don't.

12. Bone spur in Achilles' tendons
Picked up on an ultrasound when looking for something else, these only really cause me an issue when I have been on my feet for ages. Or when I have been doing lots.

13. Marfans Syndrome
This has given me some physical symptoms, mainly I have hyper-mobility through my joints, which is no help with the FM, and I seem to be still growing. Luckily I do not have any of the heart issues which seem to go along with this condition. The real issue is that I suspect that this diagnosis covered many of my FM symptoms when I was seeking a diagnosis.

14. Arthritis in thoracic spine
I have a little arthritis in my thoracic spine, my lumbar spine is in great condition. This has been causing some chest pains of late which is really annoying.

15. Asthma
The asthma has more or less disappeared. The only time that it ever appears is if I get a chest infection. Once that is cleared the asthma disappears with it so this is really a non-issue. I have not used a puffer in years.

16. Depression
With no great surprise I have some depression. This stems mainly from the chronic pain which I suffer from, but also other issues which are mainly to do with the various conditions which are listed above. It is usually the complications as a result of the conditions which cause the depression. I am not one to complain so I put on a happy face and go on with my life. I am not the sort of person to go into a hole and wallow in my pain and unhappiness of my lot.

The question must be asked as to why I have published this list of issues and mentioned how they affect me. I have done this because people have struggles which we do not know about. Most of the time they are hidden from the world because it is "not the done thing" to present them to the world because the individual seems like they are complaining.

The "R U OK?" Day is one day out of 365 where the question is asked and it is almost a rhetorical question because while people are somewhat encouraged to tell what's going on there is no more. I publish this list to say that "No, I am not OK." and I am fine with this. I have my struggles and I will continue to fight them. I have days where I find things incredibly hard. I have days where I wonder if it would not be just easier for me to just stop... everything. The thing is that I know that there are people out there who support me and who will help me through my trials and tribulations.

I will stand with all of those who are not OK. I will stand with those who are finding it hard. I will stand with all of those who are tested every day of their lives. I will stand with them and say that: I understand that it is hard, I know that you have your good days and your bad. Learn from the bad days; live for and remember the good days. To those who I call family and friends, know that I am here.

Cheers,

Henry.

How Do You Explain Pain?

Greetings,

We find it difficult to explain our pain to other people when it is acute, there are various metaphors  and similes which are used to describe the pain which is being felt so that the person who is being spoken to can understand what sort of pain it is. Most often this is for health-care professionals, but sometimes it is for friends and others as well. In the case of chronic pain it becomes even more difficult to describe and also scale because it is constant. Scales have been presented to codify some of this into some sort of idea of what the feeling is but they often do not really do the job.

The Issue With Chronic Pain

The issue with chronic pain is that it is always there. This means that for a person with chronic pain, their "normal" means that there is some pain occurring all of the time. The pain may be background pain so it is ignore-able but it is still present. It also means that the person with chronic pain gets used to being in pain and ignoring it so that they can function. The concept of not being in pain simply just does not exist for many of these people, it is a dream which is rarely realised.

The Pain Scale

So, many of us have been to the hospital or been to a health-care professional and been asked to rank our pain on a scale of 0 to 10, where zero is no pain and 10 is the worst pain you could experience. The problem with this scale is that it is relative to the individual's experience. So it really is a sliding scale at both ends.

"10"

Many of us have not had the experience of what a "10" is so they have no idea what a "10" is. On the other side is those who the "10" moves because they have faced what they thought was a "10" lived through it, realised it really was not that bad, and thus the scale as slid further up. Further as their life goes on and as they experience more this end of the scale can slide further and further up as they get used to experiencing pain.

"0"

The "0" end of the scale is what most people experience most of the time. They walk around with no issues at all no pain at all. Or at least this is what the scale would like us to believe. It is a nice thought that there are some people out there who can walk around in their everyday life with no pain, it truly is.

For those with chronic pain, the "0" is a dream which is only really met in unconsciousness or when there is enough painkillers taken that the individual mostly does not function particularly well. The result is that most people with chronic pain do not experience "0" very often. They live with as low a number as they can at which they can operate with. Sometimes these numbers are not particularly low.

Specificity and Functionality

There are two questions which are not answered by the Pain Scale as it sits on its own. They are the questions of "specificity" and "functionality". To put it in another way, the pain scale is not specific to an area of the body it is general, and it does not take into account the functional level of the individual who is describing the pain. These two elements are important to the greater understanding of the individual's perception of their pain.

A person may have a general Pain Scale of "3" but in their knees they may have a Pain Scale of "6" because they have been walking for an extended period of time, and they may have a Pain Scale of "7" in their head because they have a migraine building. This is being specific about where the individual is feeling pain and the levels. In this case the specificity is important because there are individual issues that need to be dealt with rather than a general pain level that is a problem.

Then there is the examination of functionality, one individual may be able to operate with a Pain Scale of "7" overall because it is a general pain level felt. Whereas another may not be functional with the same Pain Scale level because it is isolated to their head so that they cannot have too much light without pain. Likewise a person may suffer functionality issues if they have a similar Pain Scale in one of their arms, hands or legs, due to the restriction in mobility. This can also depend on the individual's willpower and how used to pain they are.

Used to Pain

The problem with chronic pain is that the individual gets used to pain so their "1" could possibly be equivalent to another person's "4" or even higher. It will obviously not be "0" as explained before. This is because the individual has gotten used to the pain at this level for so long that it can be shifted to the back of their mind so that they are still functional. It does not mean it does not affect them.

The problem with getting used to pain is that people with chronic pain will also not realise that they are in pain until they are asked by someone else. It is because they have trained themselves so well to put the feelings of the pain toward the back of their mind so that they can get on with what they are doing that they don't notice the pain anymore. This can lead to issues of its own.

The other issue with being used to pain is that it becomes a permanent feeling that becomes embedded. This becomes the individual's "normal" so much so that the feeling of no pain actually feels wrong. The individual can also get used to taking medication to subdue their pain enough that they can function. The issue becomes that the body will eventually get used to the medications which are being given and even reliant upon them. The result will be bigger and bigger doses until the medication  no longer has any effect. It is the same effect as being used to the pain, just in the other direction.

Personal Explanations

For myself I have fibromyalgia (FM), hence the name of this blog, and also sarcoidosis, both of which cause a level of widespread pain. I also have a laundry list of various other ailments which I have acquired through my rather eventful life. I have lived and paid for it, and I have no regrets. The result is that I have chronic pain which is present throughout my body, though it tends to be isolated in various parts of my body.

In regard to painkillers, I don't actually like taking them unless I actually need them. I have to actually be told to go and have additional medication when I need it. The issue that I have is that the pain medication often removes a level of functionality which I do not appreciate, so I put up with the pain. I do not like not being able to think, which is the reason why anything which has this sort of side-effect gets taken just before I go to bed.

I rate my Pain Scale at "4 - 6" depending on the day, as about my "normal". Mostly at anything which is below about "5" I can mostly ignore, so my Pain Scale is really quite off. This means that my "4" is my "1", you can do the math and figure out what the top end is because I have no idea. People have rated some of the things that I have been through as some of the worst. I think I have hit a "9" at least once, not sure about a "10". I am still unsure.

For the most part people rate my Pain Scale by how grumpy I get. It is usually a good scale of how I am doing as I get rather short with people and things when I am in pain. I don't lose my temper I just get grumpy. Indeed I get told to go take medication because of my level of grumpiness if there is no reason for it apparent, usually I get asked first.

So my Pain Scale could be said be "Happy" - "Civilised" - "Grumpy" Or something like that. After the "Grumpy" stage the pain levels make me particularly anti-social. Those levels are the ones where I don't like being around people at all. It is difficult to explain what it is like past the "Grumpy" stage, it really is. I am certainly not functional at those levels. Everything takes much more effort.

I hope that this explanation has given some insight into how pain is explained and how it can be explained more fully. I think that it is necessary that each person understand that the individual is at the centre here and that pain is an individual thing as much as people want to codify it. Numbers are useful to give a general idea of how things are, but they are only part of the story. There needs to be greater understanding of the individual and their pain. This is where empathy is of vital importance.

Cheers,

Henry.

Relay for Life

Greetings,

My Purple Challenge (https://alifewithfibromyalgia.blogspot.com/2019/04/henrys-purple-challenge.html) was based upon missing last year's Relay for Life. This year I have joined my friends in participating in this most worthy cause. My personal page can be found here (https://secure.fundraising.cancer.org.au/site/TR/RelayforLife/CCQLD?px=1965468&pg=personal&fr_id=5904). The question that really needs to be asked is why I would be doing this to myself.

The first reason for this is because I believe in the cause. Both of my grand-parents on my mother's side, my mother, and my primary fencing master all passed away from cancer. My father had cancer and beat it. I have also got more than one friend who has had cancer and beaten it. Needless to say that this is a disease that has affected my life almost as much as fibromyalgia has. What is really annoying is that my fencing master passed away from pancreatic cancer which they found a cure for a month after his death. This is the reason that more money needs to go to research so that tragedies like this can stop.

Secondly, it is a challenge for myself to actually do the Relay itself. Rather than walking around the course like most other people will be my team, Brisbane HEMA Clubs, will be fencing in some capacity for the entire 15 hours. In my case it will be a challenge because it means that I will be fencing on and off throughout this time, and I have no idea how my fibromyalgia is going to react. More than likely I am going to pay for my exertions later on, and in a big way.

Finally, the Cancer Council is an organisation which I like to donate to because they do great work. I encourage you to assist me by going to the link to my personal page and making a donation. This donation will assist me reach my modest target of $200. It would be really great if I could exceed this target well and before the Relay. Just know that your donation is going to a worthy cause. I have almost no doubt that I will come up with some scheme like the Purple Challenge to assist with my fundraising efforts as well.

Cheers,

Henry.

Henry's Purple Challenge

Greetings,

I am going to be rather busy over the month of May, why? A small project to raise awareness about fibromyalgia (FM) and also to raise some money for a local charity which I like to support in the process. It is also an excuse for me to get to fence a lot of people and do some good in the process, not only for myself but others as well. See you in May.

Cheers,

Henry.

Henry's Purple Challenge

Fibromyalgia the condition which I have is identified by the purple charity ribbon, hence the name of this challenge being the “Purple Challenge”. It also happens to be the colour for sarcoidosis as well. The aim of this challenge is primarily to raise awareness of people with fibromyalgia and other such similar conditions, and raise some money for charity along the way.

The primary intent of the challenge is to fight $1 bouts for the entire month against any combatant. Obviously these combatants will have to have been suitably authorised in rapier combat should they be SCA members, and suitably qualified by an instructor from other recognised Historical European Martial Arts schools. These combats will take place wherever and whenever I am at an event or training session by request of the individual who is making the donation. Obviously, sufficient time must be left in the event or training session for the bout to be completed. Any further information can be gained by contacting me.

The money raised from these bouts will be donated to the Princess Alexandra Hospital Research Foundation. Needless to say donations to the Foundation will also be happily accepted. I have chosen the PAH Research Foundation because they are a local research foundation doing important research, and by all accounts, no one in Australia is doing research into FM. 

International Awareness Day

May 12^th 2019, is International Awareness Day for Chronic Immunological and Neurological Diseases, which includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity (MCS), and Fibromyalgia (FM). For the most part, many people will not know what many of these conditions are or how they affect people with them. Needless to say the International Awareness Days are designed to reverse this.

Obviously my main interest is raising awareness of FM. Information can be found all over the Internet, some of it is good some of it not so much. Below, is part of the Wikipedia page definition for Fibromyalgia.

“Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety and posttraumatic stress disorder. Other types of chronic pain are also frequently present.

The cause of fibromyalgia is unknown; however, it is believed to involve a combination of genetic and environmental factors, with each playing a substantial role. The condition runs in families and many genes are believed to be involved. Environmental factors may include psychological stress, trauma and certain infections. The pain appears to result from processes in the central nervous system and the condition is referred to as a "central sensitization syndrome". Fibromyalgia is recognized as a disorder by the US National Institutes of Health and the American College of Rheumatology. There is no specific diagnostic test. Diagnosis involves first ruling out other potential causes and verifying that a set number of symptoms are present.” https://en.wikipedia.org/wiki/Fibromyalgia

Keeping Updated

Greetings,

I have a wad of articles which my mother gave me about fibromyalgia. I have read most of them, gone through others and disregarded what they said also because they were off-track. This formed the prime knowledge which I have been basing much of my conclusions about for quite a few years, especially considering most of these articles date back to the late 1990s. Things have changed.

I took these in with me when I saw my physiotherapist and he was impressed about the amount of reading that I had done, but suggested that I should update my knowledge. I had a think, and it is true, those articles are some 20 years out of date! Things can change quite quickly in the medical world and while somethings do stay the same others do change. Needless to say, I have been on the look out to see what has changed and quite a bit has.

Fibromyalgia has actually been recognised as a real condition by many doctors for starters. This is a big help because it was for many years just palmed off as just psychosomatic. Of course there are still doctors out there who are arguing against the existence of this disease because of its multiple presentations.

There is a lot more information out there than there was a while ago. More information for people who have the condition and also more information for medical practitioners as well. I encourage people who have the condition or who care for someone who has the condition, in any way to go and have a look what's out there. Not just one article, not just one point of view, but several different points of view. It is only through a collection of these points of view that you will get a real idea about what's going on.

There is some really exciting stuff out there. I may even get around to sharing some of the stuff which I have been reading. Keeping updated means that you will understand more about your condition and this can only be an asset. Take it as information that you can use to tailor your life around, or through circumstances so that you can live well, and more importantly LIVE.

Cheers,

Henry.

2017 is Gone, 2018 is Here

Greetings,

I don't usually do this, but I figured that I might anyway. This will be a kind of "year in review" but with a bit of a difference. While we need to look at things that have happened, it is also important to look forward to things that are coming, both to prepare for them and to hope for them. One thing that I will say, just sitting here, except for a couple of highlights, here and there 2017 is a bit of a blur now.

Well, 2017 had its upside and sure had its downside. The result being that it turned into a bit of a year with memories which I will keep and some things which I could get rid of, or reverse.

January started as it always does, hot. It also had all of the first month of the year poking and prodding by specialists, just to make sure that everything was going according to plan. There were also a couple of small swordplay things in there as well, just to cap the month off.

February was pretty dull, somewhere either in January or February my neck issue had also risen its ugly head, again. CT done to see if anything could be done, physiotherapy chosen instead. C5 - C7 is a mess and presses on the nerve giving me headaches and pain, real lots of fun when combined with the fibromyalgia (FM), but this is a recurring problem not something I can blame 2017 for.

Good things that happened over the early months, diagnosis of Central Sleep Apnoea (CSA) and a new machine meaning I am now getting real quality sleep, a real bonus. I can tell the difference without it, like a lot. Of course I had to pay for the mask myself which took a couple of months and a couple of hundred dollars.

Oh, yeah forgot, during the storms earlier in the year we got storm damage. It then has took about eight months to get the roof repaired, and the actual damaged part of the front of the house still has not been repaired yet as I am waiting to hear from the builder. Overall, thank goodness for insurance on the house.

The year wore on and I was given a diagnosis of plantar fasciitis, which explained the reason why my feet were getting so sore when I was standing on them for any length of time. Just another one to add to my list.

Went to Great Northern War (national SCA event), which was wet, very much so. Still had quite a bit of fun teaching fencing and also fencing. Won the Powerful Owl Rapier Tournament, which I was quite happy with considering the weather was doing my joints no favours whatsoever. It was also nice to see others fencing so well.

The calendar seems to be dotted with appointments during the colder months which I was not able to make, which was unfortunate, but this is kind of expected. There are also quite a few more doctor's appointments scheduled during this period as well.

Went to Fencing Fest as a paying customer for the first time, which was nice. Still did a class on cutting with milk bottles filled with water which was quite popular again. I will be running the event again next year. In August I also managed to get to fence a friend who I have been waiting to fence for 21 years, Nic Harrison, and it was everything that I had been waiting for.

September was its usual busy self. St Florian Baronial (local SCA tournament) and Swordplay 2017 (national HEMA event) resulted in me being in a wheelchair for the last day of Swordplay having pretty much run myself into the ground, this is called causing a fibro-flare because you worked it too hard. This resulted in me being off my feet for about a week. Due to a repetitive theme of this "week's recovery" every year, I have relinquished my role as Chief Safety Marshal for 2018.

In early October I was invited to join the Order of Defence (the highest level in the SCA possible for fencing), which I accepted. The elevation took place at the Burnfield 15th Birthday Bash, and the event contains memories which I will hold dear. This was a big thing for me. Also this year I sent of the manuscript of my first book to the publisher to be published, so hopefully that will be out this year.

Just when everything looked like it was going rather well, my cousin passed away on 17th December, she died saving her nephews, which is something which I will take with me, always a hero. Just to make it a real kick in the teeth it was the 10th anniversary of my mothers death on the 16th December, so the end of December looked pretty bleak for me and I found it quite hard to get into the whole "Christmas spirit". Casey and I did the easy thing and stayed home and let people visit us.

New Year's Eve was spent playing board games and card games with a few friends. The new year was rung in with relative quiet celebration.

The most important thing to remember is that 2017 is gone, 2018 is here and it is this year that you have to deal with. Yes, there is some fall-out which will brush over from one to the next, but you must move on and move on with a positive spirit. I have heard too many people say "Well, it can't be any worse than last year." Well, actually it can. You should do your damned hardest to make sure it isn't. You have to do your bit too.

Cheers,

Henry.

Been a Long Time...

Greetings,

I do apologise that it has been so long since I have written anything on this blog. I had not forgotten about it, it is more that I really had not much to say about what's been going on and really nothing to say pertinent about fibromyalgia (FM). Today, I have found things to talk about, so this entry may be a little long to catch up on the past year and five months.

What's Been Happening

Well, as usual, I have been plodding along at my usual pace. I am still fencing, and training regularly. My fencing school is going from strength to strength. I now have two subsidiary schools, one that focuses on Italian longsword and, sword and buckler; the other focuses on Iberian swordsmanship. We now have a membership total of about 60 members total, which still blows me away. Fencing is still my main form of exercise, but as will be noted later on I have added to this.

I have finally gotten in to do something about my degrading knees. I have an appointment to have an arthroscopy done on my left knee, and a referral to get the right knee done hopefully at the same time. This means that I am going to be off my feet for a period of time, but it beats having one done, and wrecking the other, and then vice versa, a vicious cycle. If I get both done at once even weight on both legs. There will be some trying times ahead but I look forward to better health at the end.

My neck has been giving me no end of grief, we have tried physiotherapy on it, and now I am on a waiting list to see an neurosurgeon to see if he can do something about it. There are vertebrae out of place and pressing on nerves, all ugly stuff, and not playing nice with the FM I can tell you. I look forward to getting that all fixed.

Recently... 

Mid-last year I started getting on my treadmill to do some walking at home. I started slow and for a relatively short period of time. This was for some basic cardio-fitness work. I have been gradually increasing the amount of time I have been going for and now I am walking for 30 minutes. I have also been gradually increasing the speed as well and have gotten up to 5.9kph (3.7mph). I have found the best thing for this to keep you going is that it need to be regular and at a time where you know that you can do it. I put my headphones in with music playing to keep me going. I have also found that it is useful to have a goal as well. My goal is to achieve the "legionary step" which is 6.44kph (4mph), but also to maintain this speed for an extended period of time. It is the historian in me that picked the speed. Goals are really important for motivation, and they need to be personal.

There have been some hiccups with my training needless to say, and there are days where I just can't do the walking, but it is important to recognise these too. The important thing is that you also need to recognise the difference between the "physically can't" and the "I'm just being slack, can't". This is the reason why it is important to have goals and motivation to do your exercise. Of course the goals need to be reasonable. I am not aiming to run a marathon, in fact I am not going to be jogging or running at all. Walking is reasonable for me so that is what I am sticking to.

Very recently thanks to a new friend Andrew, I have been going to the local hydrotherapy pool to do some exercises, and work on my joints to ease some of the FM. It is going to be a long-term project, but the results will speak for themselves. I am hoping that I will be able to get my wife to join me later on as I think it would help her too. Merely being in the heated water and being able to relax all of the joints has been an absolute blessing, even if it has been meaning getting up really early in the morning. If you get the chance to go to a hydrotherapy pool, just DO IT. You will not regret it, especially in the cooler months.

Some Notes

Just to polish this entry off I am going to give you some notes and things to think about. These are things that I try to think about all of the time, and especially when I am considering my FM. More so when I am reading about it, or discussing it with others.

1. Don't let people tell you that you can't until you have tried.

2. You don't know what you can do until you have tried.

3. Do things that make you feel good (and don't impinge on others feeling good).

4. Listen more than you talk.

5. All information is useful to a point.

I thought about giving explanations for each one of these, but I think, for the most part, they do not need explanation. If you have any queries about what I mean with regard to these notes, please feel free to ask in the comments below and I will explain what I mean. Fibromyalgia can be a debilitating condition, but only if we allow it to be, we need to stand up and not let it take control. You have the power to do this.

Cheers,

Henry.

If this is your first time reading this blog, I recommend that you go back to the beginning and read my introduction so that you may understand what I am going on about, just follow this link to my first post: https://alifewithfibromyalgia.blogspot.com.au/2009/11/introduction.html

Pain to Power

Greetings,

I know it has been quite a while since I have put anything on this blog, I have been having a lack of inspiration for anything of relevance to write. My fencing blog (afencersramblings.blogspot.com.au) seems to be so much easier to write for some reason. I am guessing that this one is personal and I do not know exactly how much of my personal stuff people want to hear about. I am really not the sort of person who likes to sit around complaining about stuff. I write here to inform and to give others ideas about how to deal with things in their own lives. So on to the subject of the current post before I get too side-tracked...

The purpose of this post is to look at how we can turn our pain into power. No, I am not talking about working a generator, I am talking about using it to motivate and to make us do more rather than withdraw into our shells as we often want to. This may seem very strange to some, as soon as the pain starts they stop because it hurts and therefore the concept that the pain can make them powerful is going to be rather alien to them. Obviously for me, not so much.

"Work through the pain." How many times have you heard this statement? It is often proposed by gym-junkies and the like when they are exercising. They are talking about pain which is developed by fatigue or a "stitch". This is not the sort of pain that people with fibromyalgia (FM) and similar conditions are familiar with. For them it is nerve pain, much more painful, and often longer lasting.

Step 1: Choosing

The first part of turning your pain into power is that when the pain strikes you have two choices. No, actually you really do. You can stop what you are doing, or you can continue. If what you are doing is not particularly pleasurable or you are not particularly motivated to doing it then stopping and saving your energy is probably the best option. Save your energy for battles you want to pick. If you are doing something that you want to be doing or is pleasurable to you and you are motivated to do, then not stopping is probably an option. You have to choose not to stop.

Step 2: Energy

The next bit is having a look how much energy resisting is going to take and how much you have in reserve. Time to "count the spoons" as some would put it. Resisting the pain and continuing is going to take energy, and in some instances it is going to take quite a bit of it. The questions you have to ask yourself are: Do you have this energy? Are you willing to spend it? Are you willing to put up with the consequences of spending it? Is the outcome going to be worth it? The last question is actually the most important as far as I am concerned, the rest are not so important, but that is me.

Step 3: Spending the Energy

Out of all of the steps this is the hard bit and takes the real determination. This is the bit where most people will feel that they have failed, or will quit trying and so forth. This is the bit where you stare the pain down and tell it who's boss. This is the bit where you look it in the eye and tell it that you are going to continue what you are doing until you want to stop, not until it wants to stop you. This is going to take determination and energy to keep going. Most importantly believe that you can do it and do it.

Step 4: Downtime

After any energy expenditure you need some downtime. This will allow you to recharge the batteries a little. At this point in time you should not be thinking about how you went, only about resting and recharging. To tell you the truth, this is the bit that I have the hardest time with, I always feel that I should be doing something. Most of the time for me it is "crash"-time rather than downtime, and I do not recommend it. Take time to rest instead.

Step 5: Evaluation and Preparation

After you have had some time to recharge your batteries you need to have a look at how you did. A responsible person always evaluates what they have done and learns from it. Most importantly, this is personal evaluation. You do not need to, nor should you, compare your successes with anyone else. Please notice that I have not mentioned the word "failure". If you did a little bit more than you would have done because you chose to. You have a success. The successes do not have to be big, the just have to be present. Find out what you can do differently next time to improve your situation so that you can do better. The next part is preparation and preparing to make the same choice again, because it will come around again, and you have to be willing to make the same choice again. The more you do it, the more motivated you will become and the more powerful you will become. Hence pain to power.

If you are reading this and think that this is an easy sort of thing to do, you are kidding yourself. It is even more difficult if you are not prone to resisting the pain and letting it have its way. The method I am proposing here is hard, and it takes time, but it is about standing up and taking power over the pain rather than letting it have all the power. No, I am not saying that you should ditch all your medications, that's crazy, but the power of your own motivation can help a hell of a lot.

I am proposing a method that works for me. Now be warned I am a stubborn sod, any one of my two siblings will tell you this, as will many of my friends. I hate being confined by things. Most of all I hate being confined by my conditions, thus I fight against them. Now a lot of the time this can land me in some hot water, you will not posts about me talking about "crashes". This is because I push the method that I am proposing to the extreme and then suffer the consequences. What I am proposing for you is to use it in a much more measured fashion. Have a go, what's the damage it can do to try?

Cheers,

Henry.