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.

3 Weeks in bed...

Greetings,

Ironically this was not the result of fibromyalgia...

Onthe 7th September I had a coccygectomy; they removed my tail bone. I had broken it previously and surgery was the only option available due to the break (class 3). The surgery went well. I stayed in hospital overnight so I could be observed. I have since come home and spent most of my time in bed.

Problem with operation in that spot, at the base of your spine, is that there are few options for comfortable positions and movement. Clearly sitting without some sort of aid is out of the question. Standing is limited due to the nerve connections present. So, I have spent most of my time in bed, lying down, in some fashion. Indeed I am writing this on my tablet while lying on my side.

I have been lucky to have a supportive wife to help me, and some friends to visit. Going by my progress, I expect that I am going to be here for another couple of weeks. This is going to be a slow healing and recovery process, just the way it has to be. 

I am hoping to get out and about sometime, but I will have to manage that as last time it resulted in two days of pain. I may just have to be patient and wait until everything settles down properly. Best not to rush it, and put the healing process back. 

Not sure if I will update about this, especially considering I had not thought about it until now. Then again, you never know. Look after yourselves.

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.

... 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 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.

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.

Coming Back... from the Semi-Dead

Greetings,

I have been feeling like garbage of late, and every time I go and see a doctor, they seem to have either "situation not changed" or bad news to tell me. Needless to say I have been going through a bit of a bout of depression and it has been affecting things, well, a lot really. I had been finding convenient excuses not to do things, or putting things off, or just not doing things at all. So I had been coasting, doing only what I really needed to survive. In my books this is being semi-dead.

Yesterday I got back on the treadmill after an absence from it for about five months. So I decided a casual stroll would do the trick to warm things up again. So I did 20 minutes at 4.5 kph, this results in 1.49 kilometers or thereabouts. Sorry about the metric measurements, its what I mostly use. This is about where I like to start with the exercise thing. That was it.

The plan is that any night that I am at home, 6pm will roll around and my alarm on my phone will go off and I will go and get on the treadmill again. This is to get some of my long-lost endurance back again and also some fitness in my legs as well. Needless to say, as I progress the time and speed will increase, more than likely it will be the speed that increases first.

Sounds simple right, yes, it is. That is the point. You have to start simple and then work up to things. At some point in time I am hoping to advance things to a stage where I can even do the treadmill on nights when I have training and not have the threat of being too stuffed to teach of train. More to the point I started, and that is the bigger thing.

I had not started because sometime in the next year I am going to get my knee operated on which is going to put me out for some weeks at least. Next there was a threat that I might have a brain tumour, turned out to be a false alarm, YAY! My neck is still a mess so off to a neurosurgeon I go to see what can happen about that, or at least a referral will get written and I will go on a waiting list. You get the idea, things just kept piling up higher and higher (this is just the short version by the way).

Only way out of this one was to stand up and decide it was not going to run it all for me. Yes, I will end up off my feet for a while, but until then I can get back doing things and the fitness will help my recovery. Sure my neck is going to be irritating, but there are ways for coping with that. It was simply time I got off my butt and did something that I could do about it all, not wait until some medical professional said I could. There will be more training ahead for me, and more fencing too, because I can do it.

So, what can you do?

Cheers,

Henry.

I Really Hate That Guy

I really hate that guy...

He smiles when he is in pain and tells everyone he is, "Fine" or "OK". He is polite to people when he would rather be elsewhere and puts a smile and tries to enjoy himself. He is also polite to people just because it benefits other people, because he does not want to upset those people or cause a problem for those people around him. He keeps his mouth shut when there are times when I would have told people off in some of the strongest language. He does not tell so much that he could. He stays around when he knows it would be so much easier to walk away. He wears the right clothes at the right times, trying to play just another person among the other people.

That is the guy I put on to cover what hides beneath. Sometimes, I really hate that guy, but he can be really useful as well.

Cheers,

Henry.

You Know You Have Chronic Pain When...

Greetings,

This is one of those "list" things that I am going to come back and add to as I come up with more of them. I may or may not date them as I go. So far the list looks like this...

You know you have Chronic Pain when:

1) Your medication never decreases it only increases.
2) Your pain medication collection rivals some drug dealers.
3) Your pain medication makes drugs off the street look soft.
4) When the doctor asks you to colour in the figure to show where it hurts, you circle it.
5) You giggle quietly under your breath when Panadol and Nurofen ads talk about "stong pain".
6) Your day is measured in milligrams rather than minutes.
7) The difference between a "good" day and a "bad" day is your level of consciousness.
8) The choice between one effective painkiller and another is how long you will be unconscious for.
9) A "zero pain" day is usually a "zero consciousness" day.
10) What you will do today, depends on how much you can afford to pay for it tomorrow.

Cheers,

Henry.

Onward and Upward...

Greetings,

It has been a while since I wrote anything here and the last was a little bit "doom and gloom" for my liking so I will be aiming at changing the tempo a little and lifting the things up a bit. So, there will be some updates with the way things are going, as per usual, and then I will just have to see what I end up with writing towards the end, so good luck to both of us.

News: I have specialists, most of whom do not want to see me until next year. Awesome. Renal specialist wants to keep an eye on things but is for the most part happy with the way things are going. Respiratory specialist is happy with the way things are going so does not want to see me until next year. Endocrine/Bone specialist does not want to see me for at least two years. Hepatology specialist gets seen in a couple of days time and I do not think that there will be much new news there. So the methotrexate is getting increased to combat the sarcoid in my liver... not really that much difference to tell you the truth.

As for the lower abdominal pain, it seems to be on the retreat for the most part. There was some free fluid floating around there, or so the CT Scan said, but it seems to be settling itself out. Sure, bits of pain here and there still, but hell, it is only pain and I am pretty used to that. I am thinking that at the current rate that one should be off my list in a couple of weeks. I will be taking the CT to show the Hepatology people just to keep them informed and see if they have any ideas, I am not expecting much really.

Other news: I have my first official training day for my new fencing school this weekend. As of this weekend it really is a reality. This is one of those life-long dream things happening finally for me. It is just the first step on a much longer path and I am really looking forward to it I can tell you. The big part of this will really get going early next year. I have mentioned this school previously in other posts so I will not go on with it much.... alright just a bit.

Ever since I was diagnosed with fibromyalgia I have been looking for a job or something similar which would fit the random schedule which the FM tends to deal me. I figured it had to be something that I loved, but also something which could be managed around myself and my issues. "Normal" jobs just did not seem to fit the bill as it was always someone else's timetable, rather than one modified to my needs. I love my fencing, as anyone who knows me will tell you, addicted would be putting it mildly. So I figured if I could combine the "owner-operator" and "love of fencing thing" then I would be set. Looks like things are headed well in the right direction I can tell you.

I figure that the first thing a person with FM needs is something to get them out of bed in the morning. This has to be something which you love and just cannot think of a better thing to be doing. For me it is my fencing, or researching fencing, or doing something with regard to fencing. Go out and find what that thing is for you. It does not matter how small it is, or even what it is, if it gets you out of bed and makes you feel good that is a path to a better life.

Other people try and motivate us, unfortunately because they are not us they can not understand what is going on with us. It does not matter how close the person is, or even if they have the same condition, it is a personal thing. We can do our best to explain what is going on but something will always get lost in translation. So, the best place for the motivation to come from is within you. This is really the same for everyone, chronic illness or not, self-motivation is much stronger than any motivation an external source can provide. Find something that will motivate you from within and you will be surprised what you can achieve.

In my case my love of fencing motivates me and does a lot for my pain levels. I do not feel as uncomfortable, even on my worst days, when I am doing something with regard to my chosen passion. The focus required for what I do takes away from the focus on the pain, and as a result improves how I feel. Sure there are days where all I can do is research and read about it, but those are days in which I store up knowledge for the days when I can pick up my sword and do it. There are even days when I am lethargic about going to training or a tournament, once I put my armour on and pick up my sword and get going, those lethargic thoughts seem to blend away. Sure on a rough day I do not move as smoothly as I would like, and I sure pay for it afterward, but the hours with a sword in my hand are more than enough reward for me.

Find your passion, find your motivation, and go onward and upward. You may be surprised where you find yourself in the future and what you can achieve when you apply all of yourself to it. All you have to do is start.

Cheers,

Henry.

Some Things I Have Learned Having Fibromyalgia

Greetings,

This post was inspired by one made by my sister. Ironically, I think I have written a lot of this separately in different blog articles, oh well...

1. Make a choice fight or don't. You can crawl up into a ball and reduce what you do. Or you can stand up and fight and keep or expand what you can. One of these is easy but leads down a much more restricted path, the other will be much more difficult but the benefit will be a much more involved life. This will require activity and it will take time. Needless to say I am a fighter.

2. You are in it for the long-haul. There are not quick-fixes for this one. It is not something you can go to a doctor/surgeon/specialist and then days/months/years down the track it is all fixed. This is one which is going to stick around for the rest of your life. So you need to think of the long-term rather than the short-term, and this means the long-term effects of what you are doing with yourself (See "1").

3. You will have to explain what fibromyalgia is to people a lot. Giving a medical definition will be a waste of time so the best thing is to give a general idea of what the symptoms are like. I tend to describe FM as the worst elements of arthritis and chronic fatigue.

4. People will not understand the pain you experience, even others with fibromyalgia. Everybody's pain is different and not everyone will have the same symptoms as you. Even if they do have the exact same symptoms as you the pain will be difficult to describe. This goes for people in the medical profession as well.

5. You will get asked where does it hurt, a lot. Being able to pin-point where you have pain is a great advantage, for the most part you will not. In response to this question for the most part it would be easier to ask where doesn't it hurt, though that can change at a moment's notice. On a pain diagram it is easier sometimes to simply circle the whole thing, or colour the lot in.

6. You will have to explain your existence a lot. People will not understand how you can do somethings and not others. This is one I get asked a lot. However, do not feel you need to explain yourself, for some people it won't matter what you say, they will never understand and they will never believe you. These people are best to be left behind as they will always second-guess you.

7. Don't be afraid to push your limits. If you want to extend yourself then you need to challenge your own boundaries. You will be surprised about what you can accomplish.

8. Expect to fail every now and then. When you take the advice in "7" you will find that your boundaries are sometimes more restrictive than you thought. The important thing is not to see the failure as the end. Get up, brush yourself off and have another go, and another, and another until you do get where you want to be.

9. Take a break. Everybody needs them. Your body will tell you when to take the break one way or another, but most often it will tell you by causing you pain. In my case it is usually after I hit the bottom, but I do rest.

10. Expect some people to walk away. This is because they cannot understand what you are going through and this frightens them. It is during these times that you will find people who are really your friends.

11. Some people will never believe you. This is regardless of what you tell them or what evidence you present. These people will always think that there is nothing wrong and it is all a show. Best advice for these people is to stay away from them as best you can.

12. Find a good doctor. I do not mean a doctor with lots of qualifications and recommendations. I mean a doctor who you can deal with. A doctor who really wants to understand and help you with what is going on with you. More to the point a doctor who actually does understand that there is something going wrong. If you have to spend your time convincing your doctor that there is something wrong and it is not all in your head you need to find a better doctor.

13. It may get better, or it may get worse. This is one of the frightening things about FM, you may get worse or not, you don't know. The only thing to do in this situation is to do what you can help to prevent it from getting worse. It may not work but give it your best and you never know it might get better or at least stabilise things (See "1").

14. Expect the random. What? How can you expect the random? Expect that sometimes your fibromyalgia will come up and bite you on the butt when you least expect it, and most often when you least want it to. In this you need to be prepared to decline, to reschedule, and to miss out. Sometimes it is better to sit out and miss things than to push yourself too far. Sometimes it will be worth it to push yourself, pick your times and your battles. In my case I have missed events of various kinds in order to do this, it is not easy to do.

15. Do not be afraid to be a burden, but do not expect to be one. There are times when you will need help and when it is offered, take it. However, do not expect people to do things for you just because of your condition, you need to give them a reason to want to care. You need to be giving something back for people to want to go out of their way for you. I pull my weight where I can, or at least try to and try to give something back where I can from what I can do.

16. Ask for help, it is not a sign of weakness. There are times when you will need help, do not be afraid to ask for it. Do not expect people to intuitively know when you need help with things. You will need to ask for help, do not simply expect it to happen without asking. More to the point be grateful of the help, especially because it most often comes when you most need it. One of the hardest lessons to learn for me, and to tell the truth, I am still learning it.

17. Do not expect help, even from those you should. There are times, and most times, when you will have to do this thing on your own. This means you are just going to have to battle through yourself and do what you can when you can. There will be times when you will expect help and it simply will not happen, sometimes even when you ask.

18. People have their own lives. They can not always be around to help you or be there for you. You need some self-sufficiency. Sometimes people's lives will be more important than helping you with yours, this is something you simply have to accept and move on.

19. If you want to do something, do it. Find what you want to do and see if you can. Give things a go, you will only find out if you have a go. You never know you just might surprise yourself. Of course, keep your expectations real at the same time. Find a project, intellectual or physical (the best kinds have both) and go for it.

20. Don't believe everything that you read. You will find things which are contradictory to what has been written about the condition. In my case I have one word "caffeine". Supposedly it causes problems with fibromyalgia and thus I should stay away from it. I have found it useful. It helps cut through the "fog", it obviously wakes me up, and it gets the blood pumping. All of these things I have found to be a benefit rather than a problem.

21. You are much stronger than you know. You can battle through the hardest parts of this condition. You always have the strength to go on. There is always light at the end of the tunnel. Some days getting out of bed is a hardship, but I do it anyway. Small achievement I know, but a victory nonetheless. If you find these victories in your life you will find that you can do a lot of things and each achievement will spur you on to the next. Getting out of bed gets the ball rolling. Sure it is hard, and it is easy to go back, but always look forward. Get one thing done today and it is an achievement, you never know you could be aimed at two, or more tomorrow.

22. Look for understanding not sympathy. The former is more difficult to achieve than the latter and is worth more. Through understanding a person can then begin to understand when you need help and how this is best delivered. Sympathy is like a pat on the head, nice but does not get you anywhere. Understanding is a long-term project usually only undertaken by those who really care and want to know. Needless to say if you go looking for it you can get a lot of sympathy, but understanding is a lot harder to achieve. Oh, and after a while too much sympathy gained off a single individual can turn into contempt, which is exactly what you don't want.

23. Insomnia can be both a curse and a gift. In the long-term insomnia is not good for you and will cause you problems, however it can allow you to achieve things as well. A short dose of insomnia in one particular instance allowed me to get further in a project than I would have otherwise. Use the over-active brain to do something with. Write it all down, even if it is gobbledigook.

24. Medication needs to be managed. Well-managed medication can be a boon. Side-effects can be a killer so these need to be managed as well. More to the point you need to realise when you actually need it. I am horrible with regard to this as concerns pain-killers. I hate taking them due to the side-effects and my fear of becoming dependent on them. I will do anything I can to avoid having to take a pain-killer. I take them when I need them, and not before. The rest of my medication is, for the most part, pretty good, even if it is somewhat limiting on certain aspects.

25. There is always another twist. There is always something around the corner that you will not expect. In my case this was sarcoidosis and osteoporosis. Dealing with both, things are looking good. These things will complicate what is going on. For the most part they do not even have to be directly associated with the FM, but they will have their effects. Look at it simply as another puzzle to solve or manage and move on.

26. Your life is a puzzle. Yes, I am a walking rubix cube. There are many moving parts and the bits do not always fit the way that they are supposed to. The fibromyalgia will complicate things for you and the symptoms will be random a lot of the time. However, we all have triggers which we can do our best to avoid where we can. In my case I look at it all as a puzzle and making all of the bits fit properly results in me having a better life than before. It may not be perfect, but at least it will be better.

27. Being positive does help. Whether it is something chemical or just an outlook on life, being positive about things helps. If you are positive there is no hurdle which you cannot tackle. In my case I accept things for what they are and move on. Curling up in a ball and hiding only works so well for so long. Eventually you have to get up and do something. Worrying about stuff you can do nothing about does nothing but waste energy on things you could be doing something about.

28. Take greater joy in the things you can do than those you can't. There are things we all cannot do anymore thanks to FM. In my case I can no longer write or type for as long nor as fast as I used to be able to. So I focus more on the things that I can do, especially the ones where the ability to do this shocks people. Big one for me is fencing and this one not only shocks friends and family but also some in the medical profession as well.

29. You will get frustrated and annoyed. I am usually a reasonably calm and quiet sort of person. This illness drives me to distraction, especially when it says "Not today." for anything. In these times you need to accept that you are actually frustrated and annoyed, but also realise that while something may not be going according to plan, there are things you can do about it. I denied for the longest time that I had depression and I do have my ups and downs with regard to it. For the most part the cause of this can be firmly laid at the feet of fibromyalgia. It makes things really difficult at times but you have to accept these things as they are and then move through them. So you can't do what you planned today, push it to one side and do something else; then try again tomorrow.

30. Take hold of something which is yours and hold on to it. Pick one thing, one thing that you love doing and do your very best to hold on to that thing. For me that one thing is Renaissance martial arts, it is something I was doing before fibromyalgia and it is the one thing that keeps me going. When I mention fencing this is what I am talking about, not sport fencing but the fencing of the Renaissance period. I do it, I read about it, I research it. This is the one thing that keeps me going and the one thing I will never give in. Essentially you need something you love to challenge you and give you the victories to keep going.

Well, I have come up with 30 of them. No doubt I will think of some more later on and these I will either add to this in some form or some other method of recording them. You will notice that some of these will repeat themselves, well, that is just the way it is. Different lessons in each one of them though.

Cheers,

Henry.  

The End... or at Least of this Chapter

Greetings,

Finally some good news. In continuing with my past two posts I can happily report that I have broken the cycle. I was actually tired when I went to bed and not arguing about going to sleep, well not any more than usual anyway. So it seems that I have found the key or keys...

1. Weather: The old nemesis raises its ugly head again. I suspect that part of my issue sleeping over the past little while has been due to the weather and it causing my joints to play up. Thus pain, thus difficulty in sleeping.

2. Exercise: Went for a walk yesterday evening and I think it tired my body out enough that I could sleep. So it would seem that there is a necessity for tiredness of brain and body for my sleep to happen.

Well, one of these I can do something about and do on a regular basis. The weather, well that is not something that I really can do something about, but at least I will get some fore-warning. Weather being crappy = me feeling crappy. I am glad that I at least have some answers even if I do not have them all.

Cheers,

Henry.

The Continuing Saga...

Greetings,

About this time last night or whatever it was I wrote about my sleeping issue. Well, looks like it is continuing, much to my disgust. I mentioned I may be back with regard to this one, and here I am. So here's another ramble...

So, I relented last night and took the medication to induce me to go to sleep. That was about 3:20am or thereabouts. I figured a late to bed and early get up would fix things. Not the case unfortunately as I am here again. Why did I relent you ask? In a word, pain. My head started to throb and various bits and pieces of my body were on their way to locking up, so staying up was not a good idea. Unfortunately I think I am headed for the same last night.

Let me say "Thanks" to those who took some time to have a chat with me on FB last night. It was greatly appreciated. Nice to have a chat and fill in some hours while I figured out what I should do. I have almost no doubt that the same will happen tonight. At least I have nailed one of the reasons and it is pain. Weather-related pain. The wet weather and the cold are most definitely getting to me again. Not happy about that. Expected it, but still not happy.

Of course due to the crappy weather I was unable to go to training tonight also. So the exercise thing went out the window so the joints have been sedentary. I hope that Wednesday clears up enough for me to go to training that night. I really think that the two doses of exercise that I get at training really do help. I think it is partially due to the enjoyment, partially due to the increased heart-rate, and partially due to the inner-warmth generated due to the exercise. Whatever the cause/effect, it works and I need training at least twice a week for this to work. For those who are new to the blog, that would be fencing training.

Best idea I ever had with regard to my FM was taking up fencing some 20 years ago. I have not looked back. It provides me with motivation, exercise and more importantly something to focus my mind on. Sure I play some console games as well and that helps, but the holistic approach to the study of fencing, studying and doing it, fulfills both the mind and the body. There is so much to learn and that is awesome. I am not saying that it is the magic key, but I think it really helps. What helps is that I have had multiple medical practitioners agree with this assessment. If you can, maybe you should give it a go.

Anyway, the brain has pretty much run out of things to write at the moment. I will probably follow the same procedure as last night, go on FB and have a chat until the body says "No more" again. I know it is not a solution, but heck, it seems to be the thing to do at the moment.

Cheers,

Henry.

Camouflage

Greetings,

Ok, so the title of this one is cryptic as hell. Camouflage is the art of concealment and is most usually heard with regard to military matters or animals. Camouflage is about blending into your surroundings. For this blog entry I am using it in a medical sense one condition covering another.

My first experience with regard to this one with regard to fibromyalgia (FM) was interesting and put quite a few people into a state of panic, ironically I was not one of them. So the story goes like this... One day I wake up and my left shoulder was really aching a lot, so as per usual I ignored it as best as I could. Later on in the day the shoulder disapates, but my chest starts aching and making it a little hard to breathe, further down the track the left shoulder moves to the left arm. By this time I am in quite a bit of pain and really unimpressed with the world. So, I decide that this is beyond the joke. As far as I was concerned I had a developing chest infection and a muscle issue in my shoulder. Time to call an ambulance as I was not in a condition to be walking to my doctor. So I rang up the ambulance and gave them my symptoms, much to my surprise I had one around to my place about 10 minutes later. The paramedics ask me my symptoms and bundle me into the ambulance. I arrive at the hospital and they immediately get me in and put sticky things on my chest and hook me up to a machine. Doctor comes in later with a puzzled look on his face as he cannot find a reason, he asks me some questions and I answer him, eventually getting to the bit about having FM. He then smiles leaves, comes back with some aspalgin and gives it to me. It all begins to feel better a little while later on. Seems that going by the diagnosis I was having a heart attack, nope just the FM playing up and messing with people.

I can tell you that after that experience I have been a little more careful about tracking my symptoms, and also about when I do and do not call the ambulance. It was a little scary that the FM could cover up or imitate a heart attack and I decided that being aware of this was really important. In other ways the experience has made me a little more relaxed about things, and a little more attentive to my pain needs.

Now we move on to the present my right shoulder has always been a little dodgy. I have had a nerve pinched on that side and it often gets overworked while fencing. When I woke up one morning with a really stiff shoulder I smiled and went looking for the "Deep Heat" and a hot shower. It abated it a little but not as much as I would have liked. What did not make sense was this one did not miraculously go away like the previous. I sat on it for a week. Every day same shoulder same stiffness and soreness. So off to the doctor I went.

A week and an x-ray later the result is that there is actually a problem with my neck and not my shoulder after all. Seems that the pain in my shoulder is nerve pain as a result of the neck issue. As far as rthe neck is concerned Cervical vertebrae 3 and 4, or C3/4 are touching one another and causing the issue. I have looked at the x-ray myself and it is pretty spectacular. I had intentions of scanning the x-ray and putting it on here to show you but it was not to be. Anyway we looked at physiotherapy and turned out to be a bad idea so it is medicinal relief instead, an increase in the medication. I will say that it is, for the most part, holding up quite well.

The conclusion to this one, if it hangs around get it checked out, regardless. The best news that you can get is that it is nothing, or nothing to worry about. FM has the ability to cover up other issues with its total randomness and people with FM and those who care about them should both be aware of this.

Cheers,

Henry.

Henry's Rules

Greetings,

It has been a while since I have written anything in my blog and for those who have been particularly interested in reading what I have to say, I am sorry. I got to the situation where giving simple updates on my current state of health just was not appropriate to my aim for this blog. For those who have been keeping up, my chest is much better and has improved a lot with excercise and physiotherapy. Now on to the topic at hand...

This particular blog is about 10 rules that I do my best to apply when dealing with my fibromyalgia (FM). What I will do with regard to this is not just simply list them and let people work out what I am saying, but write a small paragraph about each in explanation for each one. The first thing that needs to be realised with regard to these rules is that they are rather general and mostly aimed at the physical aspects of life and especially exercise. This being said, they can apply to less physical things as well.

1. Do what you can when you can.
Rule number one. This is about not having too strict deadlines because you never know what is around the corner. It is also about making the best out of a good situation and achieving all that you can when you are able to do things. When you are feeling your best you should try to achieve the best that you can. This rule is also about not pushing things too hard.

2. Do what you can with what you have.
If rule number one is about what to do when you have all of your facilities and abilities, then rule number two is about what to do when you don't. This rule is focussed upon doing things that you are able to do at the time. If you can't walk comfortably, find something that is sitting down to do, and so on. It is also about maximising the usefulness of the abilities that you have at all times, this way you will always be getting the maximum amount out of your day.

3. Any exercise which gets you to move and helps you to continue to move is great.
One of the biggest problems with FM is that if you start on the downward spiral it is very difficult to recover from it. This rule is about keeping your mobility and maintaining it. Excercise is important for keeping mobile and simple things such as walking and doing simple physical activities will improve your health. Obviously running marathons and excessive exercise in the beginning is not such a good idea, you need to ease into things.

4. Find your limits and push them.
Everyone has limits. Some of these limits are imposed upon them involuntarily, and some are imposed voluntarily. Both of these sets of limits can be pushed within reason. If you think that you cannot do something and never try to do it, you never will. This is self-limiting. On the other hand, if you try something and find a limitation there is something that can be pushed until the real edge is found and you will have made progress. This limits should be pushed carefully and with consideration for consequences.

5. A little advancement is better than none at all. Aim for 105%.
Little advances are better than big ones as little advances are progressive and one can be stacked upon the next, and before you know it the large advance is made, even if only made a little at a time. The idea of 105% is in order to stretch your limits and improve them. If you only go to 100% you will end up with the same limit as you started. If you push for a little bit more, over time your limitations will improve and be further along. Steady improvement is much better for you than over-reaching yourself.

6. If you push it too much today, remember you will pay for it later.
Burn-out, what a nuisance. This is the result of pushing things a little too hard. You need to know that if you attempt to push way beyond your limits you will end up paying for it later. This can result in some extended downtime, but this being said if you are prepared to do this and it makes you feel good to push your limits do so. This is one that I am personally guilty of on a regular basis. I get going, have too much fun and then don't know when I should have stopped. I then pay for it afterwards.

7. Don't feel guilty about taking a rest when you need one.
This one applies to everyone, regardless if you are completely healthy or not so much. Rest time is important. This is how we build our energy to deal with the next day, next task, next event or whatever. If you do not take the time to rest you will not perform at your peak. Listen to your body and what it is trying to tell you. Have a break, you will feel better for it afterward. Just remember not to stay on the break too long.

8. Respect, do not fear pain.
There is a guage that I use which puts fear of pain on one end, disregard on the other and respect right in the middle. If you fear pain then you will never attempt to push yourself as as soon as it hurts you will stop, this just may be from fatigue. On the other end of things if you keep pushing yourself even though you are in real pain you can do yourself some real damage and this is to be avoided also. Understand that if you push things then it will hurt, for the most part this will just be due to fatigue, just don't push it too far. If you are getting pain beyond fatigue then you really need to stop.

9. If you don't use it, you will lose it.
FM like all forms of arthritis and similar conditions locks joins and restricts movements. If you let your condition dictate to you, you will end up less able to move. You need to be doing some sort of gentle exercise at least in order to keep your movement up. If you fail to do this you can end up being worse than you were before. The only thing that will keep you mobile is if you move. The only thing that will keep your joints operating is to use them.

10. Recovery is a long road, but it will be worth it in the end.
Recovery takes a long time and if you rush things you can put yourself back further than you were before. It is important that you take your time to recover in order to make your recovery effective. This being said, you also need to be doing things as you are recovering in order to maintain your recovery. Once again it is a balance between doing not enough and doing too much. If you put effort into making your recovery effective you will thank yourself in the end.

These 10 rules are pretty simple and their explanations are also. I have found it useful to keep these rules in the back of my head. This way you are always considering what you are doing. In effect each person should make up a similar list of rules for themselves, this way they can be modified to suit the individual. I have given an example of a list which I have found works for me for the physical aspects, you can even have a list of rules for each area in your life, and they do not all have to go together and they can contradict one another, they only have to make sense to you.

Cheers,

Henry.

Update and the Slippery Slope

Greetings,

Update on the chest: Went and saw the doctor after the ultrasound found nothing. The current theory is it may be reflux causing it. If not the next option is injections of cortisone into the areas of my chest. After that, who knows. With the update done we can move on to a more interesting and poignant subject.

One of the greatest issues with fibromyalgia (FM) is that there are three elements which conspire together to result in a slippery slope, the three are pain, depression and lethargy. It is a problem when the three of these are able to combine together to give the sufferer the full effects of the condition, and it can also lead to the condition becoming worse. This is a very slippery slope downward, and some will not find their way back up again.

Pain is an ever-present element of FM. It is something which is dealt with in various different ways. Medication is the most well-known of these methods. For some the best way to deal with pain is to avoid it altogether. There is a problem with this however, this restricts the activity level of the individual, and also makes them less inclined to do things. This can lead to lethargy.

Lethargy is an element of FM which is sometimes taken to be laziness on the part of the person with the condition. Some days the sufferer will simply feel drained and there will be nothing which can increase their negative feelings. This is especially the case where the individual is in pain. In some instances the person with the condition will examine their situation and just stay where they are this can lead to feelings of depression.

Depression is an element which is associated with FM. This is because the symptoms of the condition tend toward the individual feeling horrible on a regular basis. There has been a correlation demonstrated between this and the individual's pain levels. The more depressed a person gets the more pain the individual may feel.

What can be seen in what has been presented is that there is a very slippery slope between the three elements presented. One leading to the other and gradually the individual feels worse and worse, and is less and less inclined to do anything. This of course leads to increased depression and the cycle starting over again. This results in and individual who does very little at all, thus making their own condition worse. Is there a way out of this? Not without work.

The individuals with FM who are more active are usually those who feel better. This is simply because they do not allow the condition to rule their lives as much as it might. Sure, they have their bad days, but they also ensure that they do things as well. Acknowledging small achievements is a good way to start bringing an individual out of a state of depression. Doing things will also assist greatly, even if it is as simple as going for a walk somewhere. These three elements can be fought against in order that the individual can feel better. This will increase their ability and want to do other things and thus the cycle upward starts.

In all cases, assistance from others is always helpful. This may come in the simple form of encouragement from them. It is something which is small but helps a great deal. Help the individual with FM to see the positive things that they can do rather than focusing on those that they cannot. It is not easy and it does take time but it is possible.

Acknowledgement of pain is important, but fear of it or complete avoidance of it will not help. Do the little things that you can do now. Acknowledge the achievement. As you do more and more things, you will be able to do more and more. The increase in activity itself will also help you feel much better than if you did not do things. As soon as you feel yourself slipping downward, find something to help you fight your way upward and work at it. Increasing activity may cause some problems in the beginning but it will be worth it in the long run.

Cheers,

Henry.

8 - 11/12/2009 - My Little "Twinge"

Greetings,

Disguising and understating pain is something which I seem to have a true talent for. I mentioned on Facebook at one point in time that I was not feeling well and had a bit of a "twinge" of pain to deal with. Now, while it was somewhat the truth, the actual situation is something a little different. In essence, this is something like a "bad day" for me.

Where to start? Well I suppose at the beginning would be the most obvious. I woke up with some constriction across my chest. The muscles were aching quite a bit. I thought it was nothing so decided that I just needed to do a bit of deep breathing and it would all be good. I breathed deeply and instantly got sharp stabbing pains on both sides of my sternum, not a good start. Things with regard to my chest would only get worse for a while.

Along with the breathing issues associated with my chest, I also noticed a distinct lack of movement without pain. Anything that involved rapid or large amounts of movement of my arms was not good and caused me pain. This was not good and was actually the longest lasting aspect of the chest pain. The breathing eventually got easier and the pain lessened eventually taking deep breaths, but rapid movement was still a problem.

The next on the list was my left shoulder. This actually stiffened up quite a bit not long after the limiting aspect movement across the chest had lessened, which is about right for me. This was mainly stiffness on my left side a limited movement again. The chest area around the left shoulder was a little sore but nothing like my chest before.

Just to add a little more on to this situation, my left leg around the hip decided it would play up as well. This happened at the same time as my chest and continued with the shoulder issue. This was a sharp stabbing pain into the hip joint, but was more toward the spine, sound familiar? Yes, you guessed it sciatic pain. So at least I could nail it down to one nerve cluster. This would result in movement issues due to pain mainly, and as with any nerve issue it spread down the leg to my ankle. This of course made things rather difficult for quite a period of time.

So the question that comes to mind is how I dealt with this particular situation. Well medication is always helpful to a degree. In my case it was three different types of pain-killers all at once, but as anyone who knows me at all, this only came after I could not ignore the situation anymore. I tend to only resort to pain-killers once every other avenue has been exhausted. I don't tend to like to take pain-killers for several reasons, the two big ones being not wanting a dependence on them and the other being the amount required to actually do any good.

Pure ignorance and denial of the pain is one of the most basic, but tends to be the least effective of all of them. Distraction therapy is always much more successful. Getting involved in doing something to take my mind off the pain works much better. I altered what I was doing during the day somewhat, but not all that much. Stubbornness seems to be one of the key aspects which keeps me going during times like this. In many ways it is the stubbornness and distraction therapy which does the prime job and the painkillers are more of an assistance.

Well, that's about it. This is what one of my "bad days" is like. On a scale this situation, while it lasted for a couple of days actually rates pretty average to below average for one of my real "bad days". The get worse than this and sometimes, much worse than this. I don't tend to like to focus on this sort of thing as it depresses me, but it is just the way it is. I always look forward to what tomorrow will bring, no point in letting the issues and pain beat you, that takes all the fun away.

Cheers,

Henry.

3/12/09 - Randomness

Greetings,

This is actually amusing writing about this particular subject as most of the times when I am having a "bad day" I don't have the energy to write about it. One of the most annoying things about the condition is the randomness of it. I just don't know how I will be tomorrow, for the most part I can work through things but there are times....

Perfect example, last night, nice and comfortable, then I get this sharp stabbing pain through my knee. I rub it, it goes away. I continue doing what I am doing and then a about an hour later, same again. Of course, less that 12 hours later, the pain is gone from my knee. No explanation why at all. This is one of those things which drives me nuts about this condition.

FM is one of the most random set of symptoms and irritations I have ever experienced. The pain can be utterly random and for no reason.

One day I woke up with a stiff left shoulder, happens sometimes. Then I get a sharp stabbing pain through my chest. This pain persists for a couple of hours to the degree that I am thinking that there may be something wrong. I call for an ambulance as I am suffering from loss of breath as well. I tell them the symptoms and they get around here quick-smart.

I am bunged off to hospital. They give me an ECG and other stuff and then look at the results. It is at this time that I figure that they think that I am having a heart attack. The doctor comes in to talk to me and he is looking excessively confused about the whole thing. He asks about smoking habits and all of that sort of stuff. He finally asks about pre-existing conditions, I say "FM" he looks at me, rolls his eyes. "Right." he says "This was an attack of pain caused by FM." I am discharged from the emergency and go on my merry way.

This of course begs the question what happens next time? Do I think it is just an FM thing or do I call the ambulance possibly for a false alarm? This is one of the things that makes FM so annoying the standard sorts of pain from FM can mask underlying other problems. I have had pneumonia more than once and put the chest pain off as FM.

While FM is not directly life-threatening, some of the symptoms can mask things that are. This can be a real annoyance and can lead to all sorts of problems. Needless to say I am being a little more careful about my symptoms and trying to decipher which is FM and which is not. I am making some progress with this, but some days are really trying.

Cheers,

Henry