Psychological Aiming: A Respiratory Pause

 Greetings,

One of they problems that causes some issues, or at least used to in a big way, was Sleep Apnoea. I have not only Obstructive Sleep Apnoea (OSA) which is the common variant where the soft palate tends to block the airway when I sleep, but I also have Central Sleep Apnoea (CSA) my lungs sometime decide they want some time off and just stop. Needless to say, without my sleep machine, I don't get much sleep and it could cause some catastrophic health issues.

My snoring as a child was described as me taking a breath, breathing in, and in, and in, and then holding it for a while, then letting it out, and out, and out, and out, then stopping. Then finally breathing back in again. It was the stopping, the 'respiratory pause', before breathing back in again which used to scare both my mother and also my sister if they ever had the misfortune of being awake when I wasn't. 

Interestingly, for another project, I have been reading through some pistol training manuals. I read all sorts of things all of the time. It is amazing the things you can find on the internet. Anyway, I came to a part which deals with breath control, and it advises the shooter to fire when, during the 'respiratory pause' the natural gap in the breathing where the person is most relaxed. I got to thinking...

My mother shot pistol when I was a child, and I have no doubt that I would have been around when my mother was being taught to shoot. She actually ended up being a better shot than my father. Further, all of us in the family were eventually taught how to shoot. I held my first rifle at the age of 8 years old. 

The first lesson I was taught was not to point a weapon at anything that you don't want to hit, a rule which follows for all weapons. I teach the same rule to my fencing students in regard to their swords. The second rule was to assume that any weapon that you have not checked yourself is loaded. But I digress...

So you have a family who was taught how to shoot, how to control their breath while shooting to ensure that the rhythmic motion of their bodies did not disturb their aim. Further you have a child who has breathing difficulties to start with. I suffered horribly with chest infections when I was a child. This was the part of my chronic asthma that bothered me the most. 

Maybe in the back of my mind I was not only extending my 'respiratory pause' so I could aim better, so I could shoot better, but also taking the whole idea of breath control to another step along. Slowing your breathing down when you have breathing issues is sure a benefit, and it has been mostly a benefit since then, though it has scared some nurses in hospitals, seems it keeps you heart rate a little slow. Not really helpful for their parameters for "normal," but great for calming yourself and other benefits.

Cheers,

Henry.

AMOR FATI - Love Your Fate

 Greetings,

So I have been studying a little Stoicism of late, actually I have been reading and learning about Stoicism quite a bit of late as it suits my method of thinking and I wanted to share a thought about one of Stoicism's philosophical tenets. I think that this will be of assistance to some, especially those who have chronic pain, or other chronic health issues, like fibromyalgia (FM) which is what much of this blog is about, my travels through life with FM. To explain how this philosophical tenet works I will be telling a story, my story.

AMOR FATI - Love Your Fate

In the far past days of  my childhood, I had the urge to serve, I did not know this at the time, but when I look back at it this is what the urge was. My first choice of occupation was to join the military forces, my first choice for this was to join the army, go to the Australian Defence Force Academy, become an officer, lead men, and so forth. Of course, this dream was shattered when I found out that I would not pass the medical examination, I was a chronic asthmatic. So even if I was as fit and smart as the rest, No getting in there.

My second plan, once again was to serve. I wrote to my great-uncle who was an Deputy Commissioner in the Queensland Police Service whether there was a chance I could become a police officer, even being a chronic asthmatic. He wrote back to me telling me that I could but before I went for the medical, I would have to have two years completely clear of asthma. Well, that was not going to happen in a hurry, so I shelved that idea.

When we were asked in school what we wanted to be when we grew up, needless to say I had already had a good, long, think about where I was going, and my limitations. This boy wanted to be a fireman, that girl wanted to be a nurse, I decided that I wanted to be an historian. So, from them on any chance I got I would study history of what ever I could get my hands on.

The same pattern followed through my High School years, my eyes were firmly set on my goal. I had a look at other options on the way. I even dabbled a little with the idea of being a shot firer, the person who sets and detonates explosives at mines, but I was clearly going for my goal. Well, there were some stumbles, like failing my first attempt at university, and spending three-and-a-half years unemployed.

During that time of unemployment, with too high a skill level, and no qualifications, that I was put in an office traineeship. Seemed like an idea to tide me over until university places and funding was available. Then I developed pain in my fingers and wrists, to the point that I could not write or even make a sandwich. Here is where FM loomed its ugly head, of course it was misdiagnosed for about two-and-a-half years, meaning that I ended up on anti-inflammatories, which damaged the lining of my stomach, so now I cannot take them at all.

Eventually, I got a diagnosis from a specialist at the local hospital. End of the traineeship, not much good having an employee who has to take random days off because his body doesn't work. I applied for a disability pension. It was rejected and told that it would all clear up in six weeks (I wish). More job search without luck. Eventually I ended up going back to university to do the degree that would set me on the path to becoming an historian.

The Disability Support Officer at the university was great, she helped me manage my degree so I could handle the work. I was given extra time for my examinations, a laptop to type on rather than write. My lecturers were also really understanding, I was able to get extensions on my assignments when I needed them, and they understood my random absences. Only issues throughout the whole thing was dealing with the government to remain funded, and this happened almost every year.

So, you'd think a person with a degree is more easily able to find work, right? Nope. Now you are too over qualified, or under-qualified, you are sandwiched in between where you need to be. I spent a year or so being bounced around again, not finding suitable employment due to my FM. So, I went back to university to do Honours. Finished that, now I am technically qualified in my field. Of course, the offerings for historians are like hen's teeth, they do exist, just very rare.

During my last years of High School I had joined a medieval and Renaissance recreation group the SCA, and was enjoying myself recreating bits of history. If you enjoy studying history, what could be better than living bits of it? This enjoyment did not abate all the way through these ups and downs.

Along the way I had learned how to use a sword called the rapier, now think of a weapon which is the grand-father of the modern epee, and you are on the right sort of track. This is a different sort of fencing: it is not restricted to a strip, it is fought often on a marked out field called a list; unlike sport fencing, you can use your other hand sometimes even to carry another weapon; this form of fencing is based on treatises from the 13th to the 17th centuries. I was developing quite a bit of skill along the way.

To cut a much longer story short, I do still study bits of history, but it is usually something to do with fencing. I fence more than most people, and I actually teach people how to fence. I actually did get on the Disability Pension, so by default I am being paid by the government to research history, and teach people how to fence. I am also writing and publishing some books, which I never thought was going to happen. All in all I am happy with the way things have turned out. This is because I have embraced the way things have turned out rather than resented it. Yes, it has taken me longer than most to get here, but I am more comfortable with what I am doing than most are with what they are.

AMOR FATI - Love Your Fate means to love your life the way it is, not resenting things that did not happen and not hoping for things that might not happen. It is accepting things the way they are and embracing them with all your heart. I accept that my conditions impede my progress, but without them I would not be in the position that I am in now, more in control of what I do during the day than most, more in control of my career than most. Take your life and live it to its fullest.

AMOR FATI - Love Your Fate

A small side note, you will note that I have used lots of Wikipedia links. It is because I believe it is a good resource and worthy of use. It now has the research of many more respected resources as you will find in the bibliographies of many of the articles and I encourage my readers to donate to the Wikipedia to keep this valuable resource alive and free for all.

1/365 is Not Enough

 Greetings,

Last year I gave an update of my list of illnesses that were current (https://alifewithfibromyalgia.blogspot.com/2019/09/the-list-i-am-here.html) just to let people know exactly what is going on with me, should they really want to know. Well, this year has been no picnic I can tell you and the COVID-19 pandemic has been just the beginning of it. You throw in costochondritis on top, which has this habit of imitating a heart attack, and things have not been a hell of a lot of fun. (Yes, I have chest pain, and can't breathe properly. No, I don't want you to call an ambulance. I can't breathe properly because I have chest pain. No, it is not my lungs.) Not to mention the other parts of my body have been playing their usual merry hell. Oh, the COVID pandemic has been lots of fun too, especially when you are one of the "high risk" category. Crazy when the rules that you have been following and trying to get others to follow suddenly become policy...

... stay home when unwell.
... wash your hands.

... stay away from sick people, and distance from people in general.

So here we are on "R U OK?" Day again and social media is being flooded with memes and bits and pieces of people asking the simple question. Well, again I am going to say, "No, I am not OK, and I have damned good reasons not to be." That being said, this is my state of affairs. This is what I have to deal with.

I do not expect people to be checking in on me every day, or even today, aside from the fencing class that I have this afternoon. In fact if people did try to check on me every day I would find it truly irritating, but that is just who I am. I work through things myself, for the most part. When I need help, I will get around to asking. Yes, my wife, and my doctor both think this should be more often.

One day out of 365 is not enough, people need to be reaching out to one another all of the other 364 days of the year as well. It is even more so in the current situation with the pandemic going on. People are not "OK" at all. People are feeling isolated, people are feeling like their world is crashing down around them (in some cases it is), people are being confused by different messages which are being put out there, and all of this is creating stress on people. Even for people who aren't "at risk" i.e. those with mental health issues, this is rough.

Make time to talk to your friends and family. Use some of that endless phone credit you have. Use some of that endless internet time you have. Get in touch, make a connection, talk to someone. Make a real connection with them, see how they are really going. Make a habit of doing this. If people took it upon themselves to do this it could change things a lot.

Go find a friend or someone in your family to talk to. Not just today, but other days in the year. Make a change for the better. They are interested in what's going on in your life, just as you are actually interested in theirs. Just try it. The time you have in their company will be time you are happy you spent.

Cheers,

Henry.

Will the Lessons Be Learned?

Greetings,

The world as I write is in the grip of the Novel Coronavirus (COVID-19) pandemic. There are very few countries which have not been impacted in some way by this virus, and the ones which have been impacted by the virus have been impacted heavily. Australia has been impacted quite heavily, "social distancing" measures have been introduced along with self-isolation and quarantining measures as well. We have already seen a panic-run on shops of some essentials, and as a result rationing put in place to prevent further occurrences of such panic-buying of these essentials.

Hygiene measures have been put in place to prevent the spread of the virus. Sick people have been told to stay at home, hence the self-isolation. People have also been told to wash their hands, and keep their hands away from their faces. The interesting thing is that these measures should be "common sense" things that people should be doing anyway.

Flu season is also upon us soon. It is most interesting that the same people who are being paranoid about COVID-19 and posting on social media about it are the same people who do not get the flu vaccination, and also the same people who often continue to go out in public when they are sick. If the current pandemic has taught us anything is that everyone who is able should get vaccinated, if possible, and sick people should stay at home so they do not infect others. Why?

The 1918 pandemic which killed 50,000,000 people was not some random virus. It was a strain of the influenza virus, or flu, H1N1 to be precise, also known as "Spanish Flu". What is ridiculous is that every year we have a new strain of the flu turn up. Every year it spreads around the world during winter months when we are at our most vulnerable. Scientists have been warning us for years about an upcoming pandemic of the same proportions, if not worse than 1918. Watch the Netflix series "Pandemic" and reconsider how you think about the flu.

The problem is that people look at the flu and because it is common and lots of people survive it, they don't worry about it. It is not the people who get sick and shrug it off which is the concern, it is the immune-suppressed and immune-vulnerable which you get vaccinated for. You get vaccinated so you do not pass it along to your friend who may be under treatment or may have a chronic condition.

If anything gets learnt from this pandemic, it should be the importance of people a) getting vaccinated because it is available; b) not going out when they are sick; and c) people paying attention to simple hygiene such as covering your mouth and nose when you sneeze or cough, and washing your hands regularly.  Do it for your elderly parents. Do it for your immune-suppressed friend. Do it for your friend with a chronic health condition. Do it for me. Just do it for yourself.

Hopefully the lessons will be learned and remembered and the flu will not have as much of an impact. Learn the lessons from COVID-19, apply them during flu season too. This is a personal responsibility thing, everyone can do their part. It starts with you.

Cheers,

Henry.

#washyourhands, #getvaccinated, #getafluvax

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.