Out of Control

Greetings,

We all like to think that we have some control over ourselves and our surroundings. I can tell you that this is an illusion, it is a comfortable illusion, but an illusion nonetheless. The focus of this article is on the tenuous control that a person with FM has upon their lives and also some ideas I have about getting some more of the control back. Big note with regard to this, each case is individual, some of this may work for you and some of it may not.

There are two elements to the body which will be discussed, the mind and the body. Ironically the one which we think that we have most control of is actually the one which we have least control of and vice versa. With this idea firmly planted, I am going to have a look at some situations which I have been faced with and some of the ways that I deal with various elements in my life.

Triggers and Planning

One of the greatest problems that I find with fibromyalgia is the randomness of the condition, and this is directly related to control and it is here that we can get some control back. We all know that we have triggers which will set our FM off either in the short-term or the long-term. The greatest control that we have is acknowledging these triggers and relating them back to their causes, not their symptoms which we know so well, but their causes.

For those of us who have been living with our condition for some time, the triggers are self-evident and we have grown accustomed to their presence and know the consequences. For those who have been dealing with the condition on the shorter term, my advice is to get a diary and record things, everyday things, and figure out the patterns. The triggers may be mental and the triggers may be physical both have an effect.

In my particular case I hate being tied down and being told that I can't. What this results in is me pushing myself physically a lot. I know that one of my triggers is over-doing things on a particular day. I know for sure that the fibromyalgia will come back and bite me in the arse the next day. I also know that stressful situations will also cause issues for me. These are especially the case where the stress is definitively emotional. Sure getting pissed off raises the endorphins and the adrenalin, however the crash will always come about. The symptoms I have described here are some of my triggers.

Once you know some of your triggers you can start to plan. If an activity causes you to have a flare-up the next day, plan it for a day where you have the next day where you can relax, and expect to. If there is a particular type of weather which causes you issues, which I know is the case for me, watch the weather report and this may help you plan for the next day. Of course there are those times where the FM rears its ugly head without explanation, we still have to deal with these and it is here where the control is seen to be an illusion. The trick here is to do what you can in order to plan. Even if it only helps a little, this is a little more than you had before.

The Body

We all have this belief that we are all in full control of our bodies. If this is the case we should be able to raise our immune systems from the inside during flu seasons. If this was the case then things like heart attacks and strokes would be things of the past. The thing is that the body is a complex mechanism which we are still trying to understand. In the case of a person with FM things become even more tricky.

My idea to write this particular post was the result of a particularly bad day on one which I thought was going to be a good one. I got a reasonable amount of sleep, the temperature was reasonable and the weather was reasonably settled. Should have been a good day for me. Did not happen. Before too long the symptoms began to build, shaking in the hands resulting in pain later on. Headache building due to my neck being an issue, and of course the infamous "FM fuzz" which I hate the most. As a result of this I decided that I should write something about what was going on (Obviously not the day I am writing this).

According to all of my "trigger data" it should have been a good day, but things just decided that it was time to go downhill. It was really frustrating for me I can tell you, I had plans for that day and obviously they went out the window. It is this lack of control that is the thing that annoys me the most. Sure we can plan, as indicated above, but the control is something which is very tenuous. For the most part where most other people have predictability, this is lacking in a person with FM. The one big thing that I have noticed with FM is the sharp reduction in control that the condition results in.

Ironically, while the body is the one which reveals the most symptoms in most cases it is the one which is the most out of control. The control over the body is a nice illusion which we all cling to. Sure there are elements of the physical situation which we can control, but there are also those which we simply cannot. The sooner people realise this the better in my opinion. Once they can do this then they can identify those elements which they can control and focus on them.

The Mind

A person starts taking about controlling the mind and most people, especially those with a sci-fi brain will automatically start thinking about "mind control", not what I am talking about. I am talking about taking some control of our own minds using our minds, and thus gaining some control over our situation. Sounds a little "fuzzy" in nature, be assured I am not going to start expecting people to light candles and the rest of it, this is something different.

The mind, your mind, is stronger than you may think. I can point this out relatively easily. There are mental symptoms which will result in physical effects. Perfect example is if someone starts talking about scratching an itch others will more than likely start scratching themselves. In the case of a person with fibromyalgia the effects can be much more wide-spread. In my particular case I find that certain stressful situations can bring on the physical effects of FM. Increasing stress in a situation can cause a my FM to cause me all sorts of problems.

From the other side of things, mental symptoms can also result in mental effects. Being around people who are tired or depressed can result in us being tired or depressed ourselves. Thus within ourselves if we find a particular situation which is tiring we can begin to feel tired. Indeed I have found that if I discuss my condition too much with people highlighting the various issues, some of them can manifest, especially the mental aspects.

So, there are mental symptoms which can create both mental and physical effects. This both tells us the effects which the mind can have upon us, however, it also tells us that we can also control effects through the use of the mind. I have found that through thought processes and active thinking about things I can reduce the effects of my FM on myself. For the most part it is simply telling myself that I do not have the time for the flare-up at that point in time, or more often that I will get through what needs to be done. It is the positive thoughts which can be our allies. You will find that negative thoughts can have negative effects while positive thoughts can have positive effects. The trick, you actually have to believe in what you are telling yourself. If you don't it will not work.

I have previously discussed the idea of triggers and planning. This was mostly focused on the physical aspects of FM, but what should be noted here is that the same can be used against the mental aspects as well. Of course, the same reduction in control is also present and we need to be aware of this.

With regard to the mental aspects of fibromyalgia the biggest shock to my system was when I was diagnosed with depression as a part of my condition. This was quite a shock to me at the time I can tell you. I have since had a thought about it and it is simply the result of being sick for so long. In general I am quite a positive person. I always look for ways around or ways through problems rather than letting them beat me. I personally attribute this positive aspect of my nature as a great asset and assistance to me. It is also the reason why I was so shocked about the diagnosis, and resisted it for a long time. Yes, I am on medication for my depression and it does help. Keeping positive and active I have found is a great asset and has helped significantly with my FM.

Conclusion

Control is an illusion for the most part, however there are aspects of our lives which we can control. The trick I have found is to have the ammunition to fight the issues which I come across. Finding out my own triggers and planning for what is to come has been a great asset to me in order to gain back some control. Taking control of our own lives and our own conditions can only be an asset to us.

The biggest secret in all of this is that while control is an illusion there are aspects which you can control. The secret to this is finding things out and doing things about them. You are stronger than you think you are. You can find ways to deal with the issues that confront you. Your mind is a great weapon. Your positive thoughts about yourself are a great weapon. Do not think that you can win, know you can. Find those things which you can control and use them, especially against those which you can't.

FM: Without Pictures

Greetings,

So, today (12 May 2013) is Fibromyalgia Awareness Day, who knew right? I am sure that there are some of my readers out there who knew. There is part of the problem. So, rather than my recently frequent ramblings about motivational subjects and various other bits and pieces, I decided it is time to get back "on point" and talk about fibromyalgia. More to the point some important factors which make it such an invisible illness. Pictures.

Who has seen pictures of cancers? Who has seen pictures of broken bones? Who has seen pictures of burst blood vessels resulting in strokes? I am sure that we all have in the media in some form or another. How about this, who has seen a picture of the effect of FM? On an X-ray? On an ultra-sound? I will bet that most have not. This is one of the things that makes FM one of the "invisible illnesses".

We do not have pictures that we can show people to show them the evidence of what is going on with us. In a very visual world this is a problem. We have not shocking pictures to show. People do not see what is going on inside us, so people do not see what is happening, as a result we are invisible. We do have pain, unfortunately the cause is untraceable. We cannot show a broken bone, an inflamed tendon or anything else for that matter so it is hard to say what is going on. More to the point it is hard to have people know what is going on.

What makes it worse is that because we have no pictures, we often find it hard to tell people what is going on. People have a hard time believing in what they cannot see. Because we are not in pain all of the time it does not get seen. When we are in pain due to the previous we get accused of calling attention to ourselves or faking it. Why? Because the cause cannot be seen. Sure people who know us know what is going on, but they have to know us really well to really understand. We fear that there is always the behind closed doors, "I think so-and-so is faking it." is said. Even when there is pain all of the time it is still difficult to see what is going on, so we have the same results.

This is the way it is, so what can we do about it? How many of the people you know have heard of fibromyalgia? How many people you know, know what fibromyalgia is? If you are reading this and have FM, how many of the people that know you understand what you go through? The only way that this is going to change is by making it more visible. We need to tell people who know us what is going on and make them understand what is going on. We need to tell more people about this problem and that it does exist. The least thing that can happen is that one person that you know will better understand you, and that is a start.

So what am I doing? Recently I have decided to make this blog go public. Before it was a more personal thing and was shared here and there. These days I publicise it through Google+ whenever I make a post. I also publicise this blog through Facebook. I encourage you to help me with this and do the same thing, even if you only find one thing helpful or useful or interesting or which hits home to you. Share it. More to the point, if you find others doing the same thing, do the same for them. If you find groups supporting those with FM, publicise them. If you have friends or relations with FM tell them about these sites and groups, it can only help.

Oh, and one more thing, have a great day reader, and thank you for taking your precious time to read this. Your encouragement helps me, and that encouragement helps me write, and I hope that this helps those who read it.

Cheers,

Henry.

Eclipsed?

Greetings,

The question of goals and successes I have spoken on previously. This more article more points at perceptions of success and how we see them, but also how others see them. This article is pointed at those of us who feel that we have been eclipsed in some way be it in social circles, work or other fields of endeavour.

Have you ever felt eclipsed, like someone was out there taking what should be your glory? Have you ever felt like you have been pushed back into the shadows because someone else is more important than you? Have you felt like that you are not the major person with regard to a topic, and that everyone else's achievements are bigger and more important? Everyone has, you are not alone. This can happen in work, in our private lives, in our work and even in our relationships. It is what you do about it which is important.

First, you need to look at the situation with a critical eye, especially toward yourself. If you can not look at yourself honestly then this process will fail. You need to look at yourself and your achievements honestly. You also need to look at the reason for your achievements and efforts as well as this is also important.

So someone is put ahead of you. Is there a reason for this? Have you put in the same level of effort as the person concerned? If not then this is the first place you should look. Have you really put your heart into what you are doing or are you just doing this because it is expected? This is a question we must look at carefully the expectations other people build must not be more important than our own. Your own goals will always have more strength than the expectations of others, and you will always put more effort into your own goals over other's goals which have been set for you.

Sometimes it feels that we have no choice in what we are doing. The truth is that there is always choice but we just might not like the choices which have been presented to us. This can be especially so with regard to work. If your work is not fulfilling, my suggestion is to find fulfillment in something more social or recreational.  There is always somewhere we can find lasting fulfillment, it is simply a matter of finding it.

When you do something you have chosen to do for yourself, not something which has been thrust upon you or expected of you, you will gain more satisfaction in its completion. In many situations this is the only thing that you will get from your efforts as personal goals are just that, personal. The important thing here is that it is your own goal, your own struggle, your own achievement, nothing for anyone to say anything about. Where there are other participants things can become more complicated.

We always compare ourselves against others, either consciously or unconsciously, and regardless we always want to be equal or better than others. This becomes more the case where a particular achievement requires the participation of others. These others can be hurdles to what we want, or they can be seen as fellow participants and a challenge to overcome. Learn what you can from other participants, it can only improve what you are doing in some way.

Most important for ourselves. We need to find things to do that we enjoy, regardless of the other's thoughts. These things need to be constructive rather than destructive in their nature. We need to find things that we want to do and not because someone else said we should or are required to do. We need to find things which we are good at or are willing to put in the work to become good at. We need to find things which we can actually do, there is no point in finding things where the goals are unreachable, thus setting ourselves up for failure. In this we need to be realistic. We need to find things which we want to do, there is no need to fill other's expectations, unless we want to, it is your life live it the way you think best. Most important and above all things...

BE YOURSELF.

Cheers,

Henry.

Doing Nothing

Greetings,

Why is it that as soon as you tell people you are on a Disability Pension, they assume that you sit around doing nothing for the day? Or they start asking questions why and start judging you? In response the first for my particular case, I will present the following post. For the second, I will simply state that several medical professionals and government officials agreed that it would be pointless for me to find work and that it was appropriate that I be placed on the pension. Unless you know my medical history and also have the requisite training of both sets of professionals, you can keep your opinions to yourself (apologies for the small rant). Now on to the important stuff.

Assumptions

In my particular case I do not sit in front of the television or computer playing games or watching videos all day. I feel I have more important things to do with my life. Sure there are days when I do these activities but there is a reason for this and it is the reason that I am on a Disability Pension. However, aside from the things that we all have to do each day, I do keep myself rather occupied. How?

Blogs

Including this one I have two other blogs which I work on in order to facilitate the spread of information on various subjects. Aside from this one which is my more personal one and has a general focus on fibromyalgia and what I do to deal with this particular condition, there are two others.

One is focused on the exploration of the English language, or to be more precise Elizabethan English it can be found here: http://oldewordes.blogspot.com.au/ This is not required research nor was it required in any other way I decided that it was a subject that I was interested in, so I started to research it. I started this particular investigation in to the language so that at some point in time I would be able to better understand it and even possibly, produce it. How did I become interested in it? Well, that leads on to my third and most popular blog.

The other blog, and my most popular one having: 19,000+ hits, 78 posts and 22 followers who have registered, is about fencing. It is also the blog which I have been writing the longest. It is about fencing, as in swordplay, not methods of keeping properties marked. For the most part I focus on general topics and issues with regard to the subject, but it does tend to reveal my greatest joy which is the research and participation in Western Martial Arts. This reveals something else that I do in order to improve myself, and maintain fitness.

Fencing

So, hopefully I will not have to explain what sort of fencing that I am talking about here as I already have above. If not, go back and read it as I am not explaining it again. Anyway, fencing was something I got into before I was diagnosed and before I started having all of my medical issues which have led me to be on the the Disability Support Pension. I started with foil during my first sojourn to university life and decided that I liked it... a lot.

When I found out that the medieval and recreation group, the SCA (Society for Creative Anachronism) did a form of fencing which was historically based, well I was set. I got to combine a physical activity which I was doing in with research into the history of it. Fencing nut plus history nut, throw that in and I did not look back. For the most part at the beginning I was doing it all for myself, this was to change.

Best way to find people to play with is to train them yourself, so I started training people. I was learning new techniques from manuals and all sorts of sources along the way as well. What can I say, but about 15 years later I suspect that I have had in excess of 30, possibly even more, students. There are still more. In fact much of my time is actually spent researching things to teach them so that they improve. Thus along with the blogs, you throw in two or three nights a week of training, and my "wasteful time" gets smaller and smaller I can tell you.

Research 

Research is something I do, and I do to keep my wits about me and so I can keep learning things. Best way to stop a brain from stagnating is to research, and this is something that I do. Sure I have mentioned my blogs and the research which is involved with them, and sure, they do take up the highest percentage of what I research, but there are always other subjects which will catch my eye.

Occasionally I will get interested due to a film, documentary or something I have read. Crazily enough, one of my lots of research was actually a result of watching my wife play a game, which was historically based. Some of the subjects are not "academically sound" for sure, but research is research. You find something you are interested in and you find more and more stuff about it. Sometimes there is no "final end result", but when you are doing it for yourself there is no problem here at all.

Conclusion

To say that I spend most of my time doing nothing is, quite frankly, insulting. Sure I do not have a regular job like most people do, but it sure as hell does not mean that I am sitting at home doing nothing. I can tell you that is the complete opposite of what I am doing most of the time. I have blogs, I have fencing and I have research to keep me occupied. Sure I do spend some time in front of the television playing games or watching movies, but I ask this "Who doesn't?" No one works all of the time.

Sure what I do is not paid and does not fill the usual work hours, but I think that what I do fills a function. I can tell you that there would be a lot of people who would notice its absence. In fact there are. I have been told so. Indeed if I decided that I should start being completely ruthless with my time and how much it is worth I would have a lot less students than I do now, and a lot less friends too.

Before you make an assumption about what a person does or does not do and about how they do  or do not spend their time, think. Decide whether you would like the same assumption made about you. If not, don't do it. Find out what they really do, you never know you might find something and someone interesting and worthwhile.

Cheers,

Henry.

Good News/Bad News

Greetings,

This is going to be one of those good news/bad news situations. I am thinking that this post will not be particularly long or involved, and I do apologise if the brevity of this post puts people off. In a nut-shell this one is more of a status update rather than the sort of discussion that I usually like.

Good News...
Went and saw the respiratory specialist at the hospital who gave me the good old once over with regard to things. Had a listen to my chest, looked at latest blood tests, all that sort of stuff. Seems that things are tracking really well to a good conclusion at this stage. The medication is working and the sarcoidosis is gradually clearing from my lungs.

Bad News...
First, why is it the case that the good news always has to come with some bad news? Why can it not be just all good news? So, sarcoidosis is an auto-immune disease. What this means is that my immune systems have been working over time and unfortunately attacking my own body. What this also means is that I have been blissfully immune to the flu and all like bugs while I have had the condition in its full-fledged state. In order to get rid of the sarcoidosis I am on medications which pummel the crap out of my immune system. Unfortunately this means that I am now prone to every cough and cold all over the place, how do I know this? Got my first cold this weekend, and it sucks. Needless to say it is taking its sweet time to bugger off again.

Just to complicate things a little more. I was out doing the dutiful taking the garbage out job a couple of evenings ago. It was wet, I was in thongs/flip-flops whatever. Well the step was a little wet and a little slick. I put my foot on it and was not stable. Off the edge of the step. The foot did not land correctly and resulting is a twisted ankle. Not impressed I can tell you on that one. So I have had the ankle strapped and elevated for the past couple of days and finally it is beginning to come good. I mean I did not even twist it that badly. You combine fibromyalgia with bad weather and a damaged joint and everything is not good.

Anyway enough of that rot. The ankle is improving, the cold is gradually disappearing. It all just means that I am going to have to be a little more careful with myself. Dumb thing is that I thought I was being careful. All I can say is that both the cold and the ankle had better be fixed by tomorrow as I have training to go to and I do not like missing them. The fencing really does help my FM thanks to the regular relatively gentle movement. Hopefully my next post will be more interesting and less of an update. Or at least a good update.

Cheers,

Henry.

Recovery and Inspiration

Greetings,

Well, what can I say, the "crash" happened and I got hit hard. I basically was taken "out of service" for a full week and really I am not back up and running completely again. This was one of those times where the body made the statement that "You will rest." I tend to push myself to breaking point and past it often so this is the result. What can I say? In this particular case the pushing was well worth it.

I traveled to Glenworth Valley on the Easter weekend via Sydney and Gosford for one day of a week-long medieval festival which happens around Sydney each year. My purpose was to examine a Guildmaster's Prize, which is essentially the last examination for the top grade in a Western Martial Arts organisation I am a part of. It was a lot of fun, but taxing on the body. Ok, so it was not just the Prize it was the "pick-up" fights which I spent most of the weekend fighting and the traveling that really did it, but it was fun so I have no regrets.

So I mentioned "inspiration" in my title. The source, here: http://positivityinpain.wordpress.com/2013/04/07/a-letter-to-my-condition/. This is a blog written by a lady with fibromyalgia like myself, and reading it I found a little inspiration to explain a couple of things which may not be as apparent as they might be. These are some things about my life, so you will forgive the "thought-writing" process that follows.

I have had fibromyalgia now officially for about a decade or so. It has torn my life apart. It has ruined opportunities and plans which I had in place for many years. I do not doubt that it has also destroyed some friendships and also made some of my friends look at me quite differently. It causes me pain on a daily basis and makes my activity levels so random that is difficult to plan anything ahead. It causes me to be inactive for weeks on end causing me stress and feelings of uselessness. I have no doubt that some of my friends have abandoned me due to the random nature of my condition, and also due to a lack of understanding of what I go through.

My condition has placed lots of stresses on my personal life and interactions as well. I believe that I have had relationships end due to the effects of the condition and the resulting limitations of it. My wife is one of the most understanding people in the world, she understands some of what I go through. She hates my pain almost as much as I do as it limits our interactions and what we want to do. My family has always been supportive, but I suspect that they do not always understand what is going on with me and do not understand the things that I do. I hope that one day that they will.

However, my condition has also changed my life and changed the way that I view my life. I do not have a "normal" life. I do not get up in the morning and go to work. I do not even get up and look for work. I do not have work in the traditional sense. My work consists of researching pieces of history and Historical European Martial Arts in order that I can teach my students the things that I have learnt. My work consists of  going to training and teaching students the arts of the Renaissance period. My work consists of writing my blogs of which I have three, this one and two others; one is about fencing and the other is about Elizabethan language.

If I did not have FM I would be at a job every day of the week. Instead I spend my time doing things that I can and more importantly things that I love. My condition has resulted in me changing my life and focusing on the things that I can do rather than the things that I cannot. I do not doubt that without my condition I would not know my fencing as much as I do, nor would I be as skilled as I am. I would not also have students whose achievements are a source of pride.

Sure FM has closed a lot of doors and caused lots of issues, but it has also opened other doors and allowed me to experience life in a different but valuable way. Doors which have opened would not have otherwise been opened. My life is different from the "normal", this I know and accept. I live my life as it is and get as much enjoyment and fulfillment out of it as I can. Everyone should seek to do the same.

Cheers,

Henry.

Master of the Six Ps

Greetings,

Yes, I know the title for this one is a little odd but there will be an explanation of what I am talking about very shortly. For starters, this particular entry is all about preparation. Preparation is important in many different facets of our lives.

The six P's are as such: "Proper Preparation Prevents Piss-Poor Performance" and it is the concept which goes with this that I am attempting to master. This is obviously a long-term project and applies not only to my fencing, which takes up a big part of my life, but many other parts of life. It is a statement which was made by my father some time ago. I thought, at the time that it was an awesome saying, and needless to say it has stuck in my head.

So, time for a bit of examination. For starters we look at the concept behind it. It points toward what a person does before an event in order that the event goes off properly. However, underlying this particular idea is also the point that if the event does not go off, there is the high likelihood that the person only has their self to blame for the outcome. These two are the important elements overall, but it is also useful to look a little closer.

The statement could have said "Preparation Prevents Piss-Poor Performance", but this would not be as accurate. We can prepare for an event of any kind, be it an examination, a tournament of some kind, or a performance piece. The level of preparation is important we can prepare a little and brush over the important bits, and this can lead to a substandard performance. This highlights the importance of proper preparation. It is proper preparation which is of the greatest use in preparing for an event.

The next part to look at is the word "Prevents". The word "prevents" implies that the thing goes a great deal toward something not happening. However it is important that it is not complete. There are things in our lives which we cannot control which can affect a performance. For an outside performance, the weather is a big factor in this one. Of course, it could be argued that a wet-weather back-up plan could be part of the preparation. There are things we cannot control, injury, illness and family issues, all of these things can affect the performance, and in some cases whether it happens or not. What this does say is that proper preparation puts you in the greatest position, for elements you can control, to succeed.

With a little more focus on the medical side of things, making sure that the appropriate medications are taken at the correct times goes a long way to ensuring that the day works out. In some ways it can be argued that the taking of such medication is the proper preparation for the performance of the next day. For the individual with fibromyalgia preparation can be difficult. However, we all know the signs of a bad day coming up, the creeping pain issues building and general feelings of not being well. In the case of preparation in these cases it is ensuring that there is nothing important planned for that day, or cancelling it if there is.

I am still in the process of mastering the Six Ps, but I can guarantee that life gets easier the more that you are prepared for things. Hell, preventative preparation counts on this one. Of course we can never take into account everything that may happen, but there is a lot that we can examine and take into account. Preparation helps with regard to this. Putting in the preparation even if the event does not happen is a good thing as it gets you used to the idea, and will make things easier for you in the long-run.

Cheers,

Henry.