2019... An Interesting Year

Greetings,

Coming to the end of the year, I thought I would have a look back on the year at some highlights. I will be having a look at these from a neutral perspective, examining things as they were. This means that I will be acknowledging the positives and the negatives to keep things even, but in the end, I think it will turn out to be... another year completed. (Be warned this is a little long.)

Book Published

Well 2019, you have been an interesting year to say the least. There have been some ups and some downs throughout you on a personal scale, and on a broader scale. Let's see if we can do this in relatively chronological order to examine things evenly, it will also see if I can actually remember everything that happened.

I can now claim myself as an author as I have published my first book. I set up a publishing business, Sword and Book Enterprises, in late 2018 to achieve this, so the book was self-published. The book was officially published on 15 Marsh 2019, the book, Un-blogged: A Fencer's Ramblings, is available on-line from all sorts of places including Amazon and Book Depository. There are all sorts of people who helped me with this but, I cannot say "Thank you" enough to Jen Fraser, and my sister Julia Robertson, for their assistance.

On the same day as it was published I had a book launch at my place. I sent out a whole stack of invitations, via Facebook. Even had a Facebook Event set up for it. Of course, on that evening it decided to have torrential rain, so it was almost washed out. There was a small amount of people who were still able to attend and it was, a success pretty much. Hopefully, all things going according to plan, I hope to have two more books out in 2020.

Purple Challenge

Last year I was unable to participate completely in Relay for Life because my health was simply not up to it. I was very disappointed about this. So I decided that I would do something that I could do to raise funds for a good charity, hence My Purple Challenge was envisioned. The object of this was to raise funds and awareness for the Princess Alexandra Hospital Research Foundation, who does research into cancer and other areas.

The Purple Challenge, which I have spoken about before was, for the entire month of May, I would bout people for $1 per bout. The restrictions were that they had to be from a recognised fencing group, and that I had to be at the practice where they would fence me, and there was time to have the bout. In the end, I raised $100 which was more than I expected, so I rated it as a success. I will hopefully be doing a repeat of this next year, with more advertising so I can get more people involved.

Elevation

I am a member of the Society for Creative Anachronisms (SCA). Which is a world-wide organisation that recreates the Medieval and Renaissance periods. The link, above, is to the Kingdom of Lochac which is Australia and New Zealand. I have been a member of this organisation since 1992. We recreate all the good bits of this period. There is an award structure which awards various endeavours which people participate in, and the structure has various levels. The highest being the Peerage.

On 8 June I was elevated to the Order of the Laurel for fencing research and interpretation. I seem to have a pattern of having "big" moments in the SCA coinciding with wet weather, luckily on the day, the weather was "mostly" fine. The ceremony was held during a dry period of the weekend. This was recognition of about 2 decades worth of work. My prime area is Elizabethan fencing manuals, so Vincentio Saviolo (my favourite) and Giacomo di Grassi being the two prime Italianate manuals of the period. In some ways, I am still coming to terms with this recognition because this research is just "what I do".

Fencing Fest

Fencing Fest XVI was held in the beginning of August. It was, once again, a success. This is an SCA event held each year to get all of the historical fencers of the group together to share their knowledge and cross blades with one another. I started it because there was no dedicated event for this to happen. It has since been copied by various people and used to create other events.

I have been Steward (person in charge) of about a dozen Fencing Fests. They are relatively easy to run, especially when you have the right crew and support. My crew has always been amazing and very supportive. I have decided that this was my last one as Steward, as it is time for someone else to have a go and put their mark on the event. Time for me to move on to something different. Of course, I will always be around to give advice.

Swordplay 2019

I attended Swordplay for the Saturday and Sunday. I helped out a little with some stuff, but mostly spectated and caught up with friends that I do not get to see all that often. I would have been helping with safety except I was unable to. The Thursday before the event I had a liver biopsy, which meant that I was in no condition to be doing anything strenuous. I took it easy. This also meant that I missed several workshops that I wanted to attend, but the liver biopsy was substantially more important. Simply, it had to be done. It was the first time that I had attended a Swordplay with out an official role, an interesting experience.

Relay for Life

Relay for Life is rather special for me. My family has been touched by cancer more often than it probably should have. I have already mentioned that I missed out on participating in 2018. Luckily, I was able to fully participate in this year's event. Rather than walking around the track, as the other teams did, ours fenced for the time that was allocated. 17 hours of fencing, needless to say that we did not all do it at once, but had someone fencing all of the time.

This was an interesting, emotional, and fulfilling experience. It rained, and was foggy, which means there was some serious cleaning of weapons and equipment required afterward, but that also meant it kept things mostly cool which was great for fencing. I wish that I could be in as reasonable condition all of the time. I managed my energy levels by choosing my bouts, a little selfish, but worked out I think. Of course, after the event my fibromyalgia made me pay for it afterward, but I still felt it was worth the experience.

Retirement

Not long after Relay for Life, in fact the day after, I retired as the Head of the School of Historical Defense Arts (SHDA). This is something which I have probably mentioned in a post somewhere in one of my blogs, not necessarily this one. I passed on this duty to one of my students, James Wran, who I believe will do an able job of this position. This was not an easy decision to make, but was one that I had to make for my own good.

I have been Head of SHDA since the beginning some 6 years ago, and I felt it was time that someone else took over. I am not going to go into the specific reasons as it is not appropriate here. Needless to say, this is a decision that I made for my physical and mental health. The result of this has been that I am much more relaxed, and also much more focused. I am now teaching individual sessions rather than group ones, allowing better focus on the student. This is what I do better at anyway.

Letting go was a hard thing to do, but it was something that I needed to do. I still have some ties to the School as I still maintain my rank in terms of examination and obviously knowledge, and will always be around to advise should it be required. I may even be convinced to attend a class every now and then to see how things are going.

Health

Health-wise this year has been pretty good, osteoporosis has gone, the end of it much so. My respiratory specialist did not want to see me until next year, so a yearly visit. This means that my lungs are well on their way to clearing themselves up. Obviously my results from the breathing tests have been really good.

The result of the aforementioned liver biopsy was that the liver was clear, so no sarcoidosis present in it, and the fat content that was present was non-reactive. This means that the liver has gone and cleared up completely. This makes me really happy, so my methotrexate was reduced to a maintenance dose. Hopefully there will be some good news sometime in the new year that it can be removed altogether, which would appeal to me.

On the other side of things, my fibromyalgia is being its usual unpredictable, annoying self. Only time I can predict that something is going to happen with it is when I do something strenuous, then I know I am going to pay for it. Other than that, it is the usual roulette wheel of random pain annoyance.

Just to go on top of this the greatest annoyance is my neck and my left arm. The neck is pushing on some nerves which is giving the expected pain, so sore and stiff neck. This is a problem which I have been doing some exercises for and should have taken to the physio by now, so partially my fault. The left arm was thought to be connected to the neck but the nerve is being pressed on the wrong side.

I am getting nerve pain down the left arm affecting some fingers as well, have been for an extended period of time. "It is not the neck because  the nerve is pressing on the wrong side." or so I keep getting told. I think that the FM is playing silly buggers and messing up the signals, but what do I know. It is not mechanical as there is no blocking or pinching. This is a real mystery issue as the doctor has checked pretty much everything. So, looks like I am carrying this one into 2020, but all in all I am doing better than I have been.

Overall

I have not mentioned arguments. I have not mentioned fights with my wife. I have not mentioned a thousand and one annoyances, like the Australian Prime Minister being a complete d*ck, and taking the nation down paths which it should not go. These are things that I have either gotten past, forgotten about, or decided that they are issues which cannot be solved by me, at least alone. So they have not appeared in this summary of the year. I also did not mention my explorations into philosophy which have taken up quite a bit of my time and been very fulfilling. I wanted to keep things a little upbeat and focus on events, trying to end each part with a positive.

Overall, even taking into account the little annoyances, and the bigger ones, 2019 has been a pretty good year. I have made some real achievements and been recognised for others which I have been making over an extended period of time. It has been a year of changes, where I have had to make the changes in my life, rather than letting things change them for me, this has been really fulfilling and empowering. I will hold on to this power and use it in the future.

Take things as they are, without interpretation and you will find that things are not as bad as you think they are. Make the changes yourself and you will find more power than you ever realised that you had.

... 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.

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.

Relay for Life

Greetings,

My Purple Challenge (https://alifewithfibromyalgia.blogspot.com/2019/04/henrys-purple-challenge.html) was based upon missing last year's Relay for Life. This year I have joined my friends in participating in this most worthy cause. My personal page can be found here (https://secure.fundraising.cancer.org.au/site/TR/RelayforLife/CCQLD?px=1965468&pg=personal&fr_id=5904). The question that really needs to be asked is why I would be doing this to myself.

The first reason for this is because I believe in the cause. Both of my grand-parents on my mother's side, my mother, and my primary fencing master all passed away from cancer. My father had cancer and beat it. I have also got more than one friend who has had cancer and beaten it. Needless to say that this is a disease that has affected my life almost as much as fibromyalgia has. What is really annoying is that my fencing master passed away from pancreatic cancer which they found a cure for a month after his death. This is the reason that more money needs to go to research so that tragedies like this can stop.

Secondly, it is a challenge for myself to actually do the Relay itself. Rather than walking around the course like most other people will be my team, Brisbane HEMA Clubs, will be fencing in some capacity for the entire 15 hours. In my case it will be a challenge because it means that I will be fencing on and off throughout this time, and I have no idea how my fibromyalgia is going to react. More than likely I am going to pay for my exertions later on, and in a big way.

Finally, the Cancer Council is an organisation which I like to donate to because they do great work. I encourage you to assist me by going to the link to my personal page and making a donation. This donation will assist me reach my modest target of $200. It would be really great if I could exceed this target well and before the Relay. Just know that your donation is going to a worthy cause. I have almost no doubt that I will come up with some scheme like the Purple Challenge to assist with my fundraising efforts as well.

Cheers,

Henry.

Henry's Purple Challenge

Greetings,

I am going to be rather busy over the month of May, why? A small project to raise awareness about fibromyalgia (FM) and also to raise some money for a local charity which I like to support in the process. It is also an excuse for me to get to fence a lot of people and do some good in the process, not only for myself but others as well. See you in May.

Cheers,

Henry.

Henry's Purple Challenge

Fibromyalgia the condition which I have is identified by the purple charity ribbon, hence the name of this challenge being the “Purple Challenge”. It also happens to be the colour for sarcoidosis as well. The aim of this challenge is primarily to raise awareness of people with fibromyalgia and other such similar conditions, and raise some money for charity along the way.

The primary intent of the challenge is to fight $1 bouts for the entire month against any combatant. Obviously these combatants will have to have been suitably authorised in rapier combat should they be SCA members, and suitably qualified by an instructor from other recognised Historical European Martial Arts schools. These combats will take place wherever and whenever I am at an event or training session by request of the individual who is making the donation. Obviously, sufficient time must be left in the event or training session for the bout to be completed. Any further information can be gained by contacting me.

The money raised from these bouts will be donated to the Princess Alexandra Hospital Research Foundation. Needless to say donations to the Foundation will also be happily accepted. I have chosen the PAH Research Foundation because they are a local research foundation doing important research, and by all accounts, no one in Australia is doing research into FM. 

International Awareness Day

May 12^th 2019, is International Awareness Day for Chronic Immunological and Neurological Diseases, which includes Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity (MCS), and Fibromyalgia (FM). For the most part, many people will not know what many of these conditions are or how they affect people with them. Needless to say the International Awareness Days are designed to reverse this.

Obviously my main interest is raising awareness of FM. Information can be found all over the Internet, some of it is good some of it not so much. Below, is part of the Wikipedia page definition for Fibromyalgia.

“Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include tiredness to a degree that normal activities are affected, sleep problems and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling and sensitivity to noise, lights or temperature. Fibromyalgia is frequently associated with depression, anxiety and posttraumatic stress disorder. Other types of chronic pain are also frequently present.

The cause of fibromyalgia is unknown; however, it is believed to involve a combination of genetic and environmental factors, with each playing a substantial role. The condition runs in families and many genes are believed to be involved. Environmental factors may include psychological stress, trauma and certain infections. The pain appears to result from processes in the central nervous system and the condition is referred to as a "central sensitization syndrome". Fibromyalgia is recognized as a disorder by the US National Institutes of Health and the American College of Rheumatology. There is no specific diagnostic test. Diagnosis involves first ruling out other potential causes and verifying that a set number of symptoms are present.” https://en.wikipedia.org/wiki/Fibromyalgia

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.