... and Now for the Good News

Greetings,

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

Medical

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

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

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

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

Life Stuff

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

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

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

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

Cheers,

Henry.

Keeping Updated

Greetings,

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

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

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

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

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

Cheers,

Henry.

"Waiting Room" Survival

Greetings

Have you ever sat in a waiting room and thought "This is taking ages."? I think that we all have. For those of us with chronic health issues this is a common thing, mostly waiting for doctors. While this is mainly focused upon this sort of waiting period, it also applies to waiting for things in general. This post is aimed at how to survive the long wait, be it in a waiting room or waiting for something else to happen.

With regard to waiting, in Australia, the most common is waiting with regard to being in the public health system, but can be applied to pretty much anything designated as "public", be it public transport, or social security. In all these instances there are periods of waiting, regardless of when your appointment was supposed to be, the question here is how to survive the wait.

1. Patience is important. Getting annoyed about having to wait is not going to get you anywhere. It is more likely going to annoy the people who you are waiting for and also the office staff with whom you will have to deal. This is not helpful to them and certainly not helpful to you. Waiting lists count with regard to this one. No point in getting all up in arms if there is nothing you can do about it. Having patience in these situations will help immensely, put your mind on something else besides waiting, this leads to the next point.

2. Look at this situation as an opportunity rather than a burden. This will require a different point of view, and a slight change in attitude with regard to waiting. You can sit there and watch your life tick away, or you can do something productive. The time which you spend in the waiting room could be spent doing something useful. I have found it is useful for making lists and planning for what I am going to do with the rest of the day, and this is just the tip of the iceberg. Change your attitude and look at this as an opportunity.

3. Bring something to read. I pack a book whenever I leave the house, and especially when I am going somewhere for an appointment or will be taking public transport. In fact, for the most part this is my prime time for reading, nothing else better to do then you might as well read. This works best if you pick something that you are really interested in reading. The local rag newspaper or celebrity magazine will only really hold your interest for a little while. Find a novel or some other book to read that you are actually interested in and you will find that time will fly along. Only one point, if you are on public transport, just make sure you still get off the bus or train when you need to, it is a little embarrassing missing your stop because you were too engrossed in your book.

4. Find a hobby that you can do when you are out, or at least read about when you are out. This links back to the previous point in some ways, but also gives you more options. There are things which you can do which are conducive to waiting rooms. Writing, especially with today's electronic means is easy. Knitting is also an option, just be a little careful in your choice. Wood carving in the waiting room of a hospital does not inspire confidence. The choice of book becomes a lot easier when you are reading about a hobby or when the hobby has a lot of books about it. In my particular case I can always find a fencing book to read and there is always something to research.

Surviving the waiting room is not all that difficult, sure it is frustrating, but you can get things done and while away the time relatively usefully. The same can be said for being on waiting lists for specialists or whatever. Ignore how long it is taking and go and find something to do which will take your mind off it. Look at your time waiting as an opportunity to get something done, or get a good book read and you will find that the idea of waiting rooms or public transport actually becomes a positive thing rather than a negative one.

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.  

Best Things I Did for My FM...

Greetings,

So, I have been adding to my blog with reasonable regularity of late. I have decided that this is just not good because I keep losing subjects in the meantime. I have thus decided that I am going to treat this blog the same way that my Fibromyalgia treats me, with complete random. No more regular blogs I am just going to write when I feel the urge or find a subject. To this, my first one is actually a little back "on track" with the original idea of the blog.

So the post is called, Best Things I Did for My FM. Most importantly these are things that I did rather than things that other people did for me. If you have this condition you need to help yourself. No one is going to do it all for you. Sure, people can help you along the way, but the real stuff you have to do yourself. This requires motivation, and it requires courage.

Ironically this is actually a list of things but I will be focusing on a couple in this one. Most obviously, I found a doctor who actually believed me that there was actually something wrong. He actually looked at my medical history and what I actually did and devised a medical plan of how to deal with things from his end. What is even better this changes depending on my needs at the time, thus the program is flexible. So find a doctor you can talk to, explain what is going on, explain what you need, and work it from there. If the doctor is good he will take in what you say and things will improve.

For some people their little eyes and ears are going to burn when I explain what another thing that I did was as it is something I have been harping on for ages. I took up fencing. This happened because I was interested in it, not because I was told to exercise. In fact I actually took up fencing before any of my symptoms actually arrived. The point here is that fencing is something which keeps you active. The simple work of fencing is even movement based. What you need to do is something aerobic.

Now, I am not saying that you should take up running marathons or something equally silly. I am saying that you should find some sort of exercise which is easy to start with. A regular walk around the block or similar is a good start. If you can find a sport which will keep you interested and motivated that is your second step. The third step is sticking with it, even when things get hard.

I will admit there are sometimes when it is easy to pike going to training or even doing stuff at training. It is at these times that you need the most motivation and courage. You need a reason to be there a goal to set yourself. Make them small to start with and allow them to get bigger as you go along. Find some good reason to go along and make an effort, even when things seem hard. This is the reason why you need something that you are interested in and not something that you are taking up because you "have to" or "need to". This is one of those times where a "want" to is more important than a "need". Needs are things that are important to us for survival, you need to eat, you need to sleep and so forth. Wants are things that make things better for you, you want a new game, you want chocolate. In this particular case you have to "want" to do the activity, not because you have to but because you want to. This want has to overpower things that may stop you from doing this thing. It needs to get past your depression, it needs to get past your pain, it needs to be more important and a reason to go and do it.

There are times when we all need down-time, this is something that I will admit. But when your down-time seems to be more important than actually doing something, this is the beginning of a slippery slope downward. There are levels of pain you should not fight past. My biggest problem is confusing it with the ones which I can, and doing stuff when I really probably shouldn't. There is a great feeling of accomplishment at the end, but boy do I pay for it. Recognise the signs and don't let your body fool you.

A lot of people think that when they are diagnosed with FM things are really in the hands of other people, doctors and the like. Well it is NOT. It is still in your hands and you can make the difference. It is your life after all it is up to you to do something with it.

Cheers,

...Henry.