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.

-----------------------------------------------------------------------------------------------------------------------------
You will notice a lot of Wikipedia links in my posts. This is a great resource of free information which is now reliably researched, as you will note by the references which appear at the bottom of each page. I donate to the Wikimedia Foundation every year to keep this non-profit group operational, and I recommend that everyone do the same, you can do this HERE. Please give, and keep this free source of information alive, there are few of them these days.

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.

Diet: A Rude word?

 Greetings,

Why would I be talking about diets and dieting? Well, I am sure not turning into some 'dieting guru' that is going to tell you to live on some 'super-food' that will help you lose enormous amounts of weight in a short amount of time. I am going to tell a few home truths about the word "diet" and how it is often seen in the modern world, and then I am going to share my experiences with my change of diet, because that is what this blog is for, because it has helped by fibromyalgia, and I think it will help it in the long-run.

The definition of the word "diet" from the Oxford English Dictionary is: "The kinds of food that a person, animal, or community habitually eats." (https://www.lexico.com/definition/diet) So, nothing there about weight-loss or calorie-control or anything of the sort, simply what a person habitually eats. The problem is that in the modern world we have so often head about fad diets to assist us lose weight such as: The Ketogenic Diet, Noom Diet, Weight-Watchers, Atkins Diet and Paleo Diet, that every time we hear the word "diet" we think that someone is trying to make us lose weight.

Well, here's the kicker, the result of a healthy, balanced, diet, combined with exercise is that you will lose weight. Sure some tailoring to meet particular goals might help, but keeping to healthy things works. The diet which is most popular with my local health agencies at the moment is the Mediterranean diet. Yes, what people eat in the Mediterranean region, nothing more. I have been changing my food habits toward this way of thinking over the past three months or so to lose some weight, on the advice of my Hepatologist and her team to assist with my liver function, along with a healthy increase in my exercise. 

I had put on about 40kg over the past four years or so. Part of this was the result of medication effects from a bad chest infection, other part of this was my body catching up with muscle mass, another part of it was a dose of depression which reduced my activity. In any case it resulted in me being an unhealthy 118kg. Now let me say that this weight is unhealthy for my frame. It may not be for yours, it also depends how it is distributed. Most of those who know me will be now looking through photos unbelieving of my change in shape, but it is there.

Anyway, I started the change slowly, increasing my uptake of some foods while reducing the intake of other foods. The point of this process was that I wanted this diet to become my diet thus habitual, not something that was going to be for a short time, but for a long period of time. I could have stayed on the diet for the period of the program, hit my goal, and gone back to old habits, but what's the point? Then I would have to start the process all over again. I wanted these changes to last, and even continue. I made gradual changes to my diet so they would be sustainable. Also I went for healthy and tasty food.

One of the reasons people don't stay with a change of diet is because they don't like the food. You need to find food which is tasty. The Mediterranean diet was easy for me, I like olives and mushrooms, feta cheese, garlic and similar things. All of which are part of the diet. You throw in red wine, avocados and  salmon, the diet is also good for raising your HDL, so good for the cholesterol.

As a result of this diet and the exercise that has gone along with it, I am now more healthy than I have been, my pain levels are a little reduced, though this time of year my body always gives me hell because it decides that it is time to take a holiday. Oh, and as of yesterday I have lost 10kg, and I am looking forward to maintaining the same diet because it is a real one, food that I habitually eat. 

Cheers,

Henry.

Psychological Aiming: A Respiratory Pause

 Greetings,

One of they problems that causes some issues, or at least used to in a big way, was Sleep Apnoea. I have not only Obstructive Sleep Apnoea (OSA) which is the common variant where the soft palate tends to block the airway when I sleep, but I also have Central Sleep Apnoea (CSA) my lungs sometime decide they want some time off and just stop. Needless to say, without my sleep machine, I don't get much sleep and it could cause some catastrophic health issues.

My snoring as a child was described as me taking a breath, breathing in, and in, and in, and then holding it for a while, then letting it out, and out, and out, and out, then stopping. Then finally breathing back in again. It was the stopping, the 'respiratory pause', before breathing back in again which used to scare both my mother and also my sister if they ever had the misfortune of being awake when I wasn't. 

Interestingly, for another project, I have been reading through some pistol training manuals. I read all sorts of things all of the time. It is amazing the things you can find on the internet. Anyway, I came to a part which deals with breath control, and it advises the shooter to fire when, during the 'respiratory pause' the natural gap in the breathing where the person is most relaxed. I got to thinking...

My mother shot pistol when I was a child, and I have no doubt that I would have been around when my mother was being taught to shoot. She actually ended up being a better shot than my father. Further, all of us in the family were eventually taught how to shoot. I held my first rifle at the age of 8 years old. 

The first lesson I was taught was not to point a weapon at anything that you don't want to hit, a rule which follows for all weapons. I teach the same rule to my fencing students in regard to their swords. The second rule was to assume that any weapon that you have not checked yourself is loaded. But I digress...

So you have a family who was taught how to shoot, how to control their breath while shooting to ensure that the rhythmic motion of their bodies did not disturb their aim. Further you have a child who has breathing difficulties to start with. I suffered horribly with chest infections when I was a child. This was the part of my chronic asthma that bothered me the most. 

Maybe in the back of my mind I was not only extending my 'respiratory pause' so I could aim better, so I could shoot better, but also taking the whole idea of breath control to another step along. Slowing your breathing down when you have breathing issues is sure a benefit, and it has been mostly a benefit since then, though it has scared some nurses in hospitals, seems it keeps you heart rate a little slow. Not really helpful for their parameters for "normal," but great for calming yourself and other benefits.

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.