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.

The 5% Rule

Greetings,

I truly apologise that it has been so long since I have posted here. I have thought about posting various things here but they did not seem to be related. I have been rather busy trying to get a book to print as I have moved into self-publishing. I am also still running my own fencing school and all of these things take time and energy, so the lack of time and spoons is an issue. This is not what I am here to discuss. The article for this post is about progression.

5%. It does not sound like much but it is important as it is further along than you were before. Progression is about building up energy and strength, this approach is about building up this energy and strength in a manageable way. So, you decide that you want to walk to improve your fitness. Aim for 105% of the distance each time you walk and you will improve your fitness, or 105% of the speed, but not both at the same time. When you do this you will have improved yourself 5%.

Having a chronic illness is about managing the strength and energy a person has at that point in time. There is no point in going to a gym and smashing out a full session if you are going to "crash" afterward and not going to move for a week afterward. These sharp sessions of improvement and decline are not great for your body and should be saved for things that you enjoy, if you do them at all. As far as exercise for health is concerned, you should only be pushing yourself far enough that you can begin to feel it, i.e. adding 5%. This way you can repeat the same thing again, even in the same week.

For myself, I have been going to a hydrotheraphy pool twice a week, most weeks anyway and aiming for the 5%. Sometimes it is just nice to relax in the nice warm water and do some stretching of my muscles, but even this servs a purpose of the 5% extension in stretching. I can usually manage twice a week because I only push myself the 5%. It is a manageable goal. This is what we all need to aim for, thus I have the "5% Rule" and I encourage you all to use it too.

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.

Pain to Power

Greetings,

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

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

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

Step 1: Choosing

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

Step 2: Energy

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

Step 3: Spending the Energy

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

Step 4: Downtime

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

Step 5: Evaluation and Preparation

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

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

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

Cheers,

Henry.

My Coping Mechanisms

Greetings,

The previous blogs have been designed to introduce you to FM and some of the issues associated with it. This was designed to create a level of understanding so that you can understand the problems that I face having this particular condition. The important thing here is that it is understanding that I am seeking, maybe a little empathy, but sympathy is not the goal. To this point this blog will be dealing with some of the ways that I deal with having FM, and the counters which have been developed. Some of these are medical and some are things which I have worked out for myself.

One of the greatest problems with FM, aside from the varying symptoms, is its randomness. Not knowing how well you will function tomorrow leads to frustration in a lot of ways. In most instances I approach this by living day to day except for those instances where this is not possible. You can plan for some of the days where you know things are going to be a problem, but this is really only a modicum in the grand scheme of things. Medication also helps level out the ups and downs also.

The biggest element in medication is getting on to one which suits you. This requires a lot of negotiation with your doctor. I have been prescribed all sorts of medication and it took quite some time before we found a combination of medications which enabled my symptoms to be dealt with, without having any major side-effects from the individual medications or the combinations of them. Anti-depressants are the prime way for dealing with the depression associated with FM and for the most part they work quite well. Unfortunately this does not deal with all of the problems associated with the condition. They do help, but they are not the total answer to all of the problems posed by FM.

Pain is an element of FM which cannot be ignored, as much as I have tried to over the years. I have a relatively high pain tolerance, but painkillers do help quite a bit in dealing with this. Once again it is important to get a painkiller which suits you and of course, does not interact badly with the anti-depressant. There are some over-the-counter painkillers which can help take the edge off the pain associated with FM. In most instances pain is an element which is pretty much constant and the painkillers bring it down to a level which I can deal with. Of course on those good days I am actually free of pain and this is a god-send. Getting decent sleep is a great thing and helps with the condition, but it is not always possible to do this naturally. This is where sleeping tablets can help the process.

Sleep is the time when your body recovers from the day's activities and if it is not quality sleep you will not recover from the stresses of the day. Sleeping tablets can help with this and prevent a person from lying in their bed for hours thinking too much, and eventually counting the ridges in the ceiling or the amount of panels in the walls. The best sort of sleeping tablet is one that gets you to sleep and keeps you there. Of course it also needs to run its entire course before the next day comes so you do not wake up drowsy. The selection of this medication as with the other two above has to be done carefully so there are not interactions, and so the side-effects are minimised. The combination of these three medications help you to smooth out the rough patches in your existence, but never quite completely do the job. The individual also needs to find other things to assist them.

Foods which you enjoy eating are always a good thing as it encourages you to eat them. A loss of appetite in my case is usually the result of stress or pain depending on the particular situation, and of course food is fuel. Trying to run on an empty tank is bound to result in failure. My diet in general has not changed all that much from previously. There are supposed diets which help with FM, but I have never tried one. I have found that eating healthy foods which I like works much better than most diets that I have seen. This is where we will see a little irony in my case. According to some doctors, red meat, sugar and caffeine are all bad for people with fibromyalgia, along with several other things. I looked at this particular list and went "No way." This would take a great deal of things out of my diet that I actually enjoy. This is where the randomness of FM truly shows its face, especially in my case, with regard to food. I actually found that caffeine actually reduces my level of fatigue, increases my level of energy and increases my capacity to do things that I enjoy. I told my doctor about this particular situation and he told me if it works use it. The result of this is that I actually drink quite a lot of caffeinated beverages, eat what I want, and feel much better for it.

I have categorised individuals with FM into two main camps. Now, before I do this I must say that this is my classification and nothing medically based, just something that I have observed. The first group tends to be rather inactive. This is usually the result of them being afraid of being in pain due to activity. These people tend to wrap themselves up and don't tend to do much. The other group are those who decide that going out and doing things can only improve their outlook on life. These individuals go out and find active things to do and tend to push themselves in these activities. Of course this can result in them being in pain afterward, but it is the achievement that they have made which is more important to them. I have quite squarely landed myself in the second group. I have found that an increased level of activity actually improves my feelings of myself and also my pain levels.

With regard to activity, there are two types of activity that I use in order to cope with my condition. These are usually dependent on what I am able to do during the day. The first type of activity is less active. It is things like playing computer games, reading and other more inside activities. The second type of activity involves going out and actively participating in activities which involve physical activity. These activities are things such as walking, playing sports and others.

I use the less active activities on those days where I am not feeling so good. These improve the situation as I am able to see achievement in what I manage to do during that day, even if it is only achieving words written, or some game played. These activities are designed to keep the mind active while giving the body a rest. It is the self-recognition of the achievement of the activity which is important. Anyone who knows me knows that I love fencing. This is the major physical activity that I am involved in when I am feeling well. Once again it is the achievements resulted which enable the me to feel good about it. I will actually be writing a later blog about the benefits of fencing to the individual with FM. Both of these types of activity relieve a level of stress and this is important as it does improve my overall well-being.

The final coping mechanism I would like to talk about is an external one. It is not something that I take and it is not something that I do. It is something that others do for me. One of my greatest assets in coping with FM is my family and my friends. The supply a support network which has helped me a great deal in coping with my condition. This is not just through doing things for me that I can't because I am having a bad day, it is simple things like simple visits and communcation with me. A simple conversation to see how I am and what sort of issues I may be having is always helpful as it allows me to get things out of my system. This sounds really simple, but I can tell you for me this has been a hard path. I used to not talk about how I was actually feeling, I would hide my pain and discomfort as I felt that they could not help me, so why burden them? The encouragement to do the various activities that I participate in outside and also my more solitary activities has been a great asset. This level of understanding from their point of view has helped me greatly to understand that I can get help when I need it, and there really is the achievements that I only really percieved to that point in time. To these people, and you know who you are, I must say thank you, you have all helped me greatly.

While there is no recognised cure for fibromyalgia, it can be dealt with, even on a day to day basis. It is only through negotiation with others, my doctor, and friends and family that I have found that I can cope, and most of all I am not alone. Each one of these people may have suggestions for things that you can do in order to improve yourself, or may just be a friendly ear to talk to. I would not be in such a more stable condition that I am now without the help of my current doctor. Through his various medication regimes and support my symptoms for the average day are quite level. Without the combination of these coping mechanisms I would not be in the more positive situation that I am in now. I realise that I will continue to have good days and bad days, but at least with the coping mechanisms that I have developed myself and those given to me, I will push through it.

Cheers,

Henry.