... 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.

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

2017 is Gone, 2018 is Here

Greetings,

I don't usually do this, but I figured that I might anyway. This will be a kind of "year in review" but with a bit of a difference. While we need to look at things that have happened, it is also important to look forward to things that are coming, both to prepare for them and to hope for them. One thing that I will say, just sitting here, except for a couple of highlights, here and there 2017 is a bit of a blur now.

Well, 2017 had its upside and sure had its downside. The result being that it turned into a bit of a year with memories which I will keep and some things which I could get rid of, or reverse.

January started as it always does, hot. It also had all of the first month of the year poking and prodding by specialists, just to make sure that everything was going according to plan. There were also a couple of small swordplay things in there as well, just to cap the month off.

February was pretty dull, somewhere either in January or February my neck issue had also risen its ugly head, again. CT done to see if anything could be done, physiotherapy chosen instead. C5 - C7 is a mess and presses on the nerve giving me headaches and pain, real lots of fun when combined with the fibromyalgia (FM), but this is a recurring problem not something I can blame 2017 for.

Good things that happened over the early months, diagnosis of Central Sleep Apnoea (CSA) and a new machine meaning I am now getting real quality sleep, a real bonus. I can tell the difference without it, like a lot. Of course I had to pay for the mask myself which took a couple of months and a couple of hundred dollars.

Oh, yeah forgot, during the storms earlier in the year we got storm damage. It then has took about eight months to get the roof repaired, and the actual damaged part of the front of the house still has not been repaired yet as I am waiting to hear from the builder. Overall, thank goodness for insurance on the house.

The year wore on and I was given a diagnosis of plantar fasciitis, which explained the reason why my feet were getting so sore when I was standing on them for any length of time. Just another one to add to my list.

Went to Great Northern War (national SCA event), which was wet, very much so. Still had quite a bit of fun teaching fencing and also fencing. Won the Powerful Owl Rapier Tournament, which I was quite happy with considering the weather was doing my joints no favours whatsoever. It was also nice to see others fencing so well.

The calendar seems to be dotted with appointments during the colder months which I was not able to make, which was unfortunate, but this is kind of expected. There are also quite a few more doctor's appointments scheduled during this period as well.

Went to Fencing Fest as a paying customer for the first time, which was nice. Still did a class on cutting with milk bottles filled with water which was quite popular again. I will be running the event again next year. In August I also managed to get to fence a friend who I have been waiting to fence for 21 years, Nic Harrison, and it was everything that I had been waiting for.

September was its usual busy self. St Florian Baronial (local SCA tournament) and Swordplay 2017 (national HEMA event) resulted in me being in a wheelchair for the last day of Swordplay having pretty much run myself into the ground, this is called causing a fibro-flare because you worked it too hard. This resulted in me being off my feet for about a week. Due to a repetitive theme of this "week's recovery" every year, I have relinquished my role as Chief Safety Marshal for 2018.

In early October I was invited to join the Order of Defence (the highest level in the SCA possible for fencing), which I accepted. The elevation took place at the Burnfield 15th Birthday Bash, and the event contains memories which I will hold dear. This was a big thing for me. Also this year I sent of the manuscript of my first book to the publisher to be published, so hopefully that will be out this year.

Just when everything looked like it was going rather well, my cousin passed away on 17th December, she died saving her nephews, which is something which I will take with me, always a hero. Just to make it a real kick in the teeth it was the 10th anniversary of my mothers death on the 16th December, so the end of December looked pretty bleak for me and I found it quite hard to get into the whole "Christmas spirit". Casey and I did the easy thing and stayed home and let people visit us.

New Year's Eve was spent playing board games and card games with a few friends. The new year was rung in with relative quiet celebration.

The most important thing to remember is that 2017 is gone, 2018 is here and it is this year that you have to deal with. Yes, there is some fall-out which will brush over from one to the next, but you must move on and move on with a positive spirit. I have heard too many people say "Well, it can't be any worse than last year." Well, actually it can. You should do your damned hardest to make sure it isn't. You have to do your bit too.

Cheers,

Henry.

SHDA or Dreams Continued....

Greetings,

In my last post I mentioned something of a fencing school that I was creating. This has been a long process and one that I have talked and talked about rather than actually doing anything about. Well, the doing is now happening in a big way. I figured I should give a little more detail.

First of all, keeping with the FM focus of the blog, the idea of the school was to create myself a job which was suited to my condition. The advantage of this is that the only boss I have to worry about is myself, and my wife if things go really silly. Fencing in various forms has kept me moving for many years and now forms a major part of my motivation. This project allows me to do something which I love, something which is good for me, and just maybe turn it into something I *might* make some money off (I am starting this off as a non-profit organisation so money is a future thing). I figure that the best thing for a person to do is to find something that they love and see if they can make something of that.

The School of Historical Defence Arts (SHDA) is a martial arts school focusing on the application of Historical European Martial Arts (HEMA) for the purposes of practical application in the gaining of efficiency in combat. This is not merely following the instructions found in the manuals as the plays depict but applying this to more practical situations against some sort of antagonist.

The school, as part of the process of learning and understanding the manuals, undertakes in-depth investigations of period manuals taking into account not only their martial applications but also those aspects of courtesy which are appropriate to the period and situation. This investigation focused on the practical application of the information found in the manuals to combative situations, but taking into account those other aspects significant to the study and also to the martial art. While the manuals will primarily be the focus of the teachers, students will be encouraged to have some interest in the manuals and involve themselves in similar study.

Well, that was a cheat. The above two paragraphs are taken straight from our information sheet. However it does describe pretty well the intention of the school and what I want to do with it. You will notice that this is focused at historical fencing rather than sport fencing. Big difference here I am telling you. The biggest difference being that one is sport and the other is martial art. The Facebook page is here: http://www.facebook.com/SchoolofHistoricalDefenseArts. The school is based in Brisbane, Australia, however I am fully willing to feed any interest in it. I can be contacted by e-mail about the school at shdacontact@gmail.com.

Cheers,

Henry.