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.

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

Been a Long Time...

Greetings,

I do apologise that it has been so long since I have written anything on this blog. I had not forgotten about it, it is more that I really had not much to say about what's been going on and really nothing to say pertinent about fibromyalgia (FM). Today, I have found things to talk about, so this entry may be a little long to catch up on the past year and five months.

What's Been Happening

Well, as usual, I have been plodding along at my usual pace. I am still fencing, and training regularly. My fencing school is going from strength to strength. I now have two subsidiary schools, one that focuses on Italian longsword and, sword and buckler; the other focuses on Iberian swordsmanship. We now have a membership total of about 60 members total, which still blows me away. Fencing is still my main form of exercise, but as will be noted later on I have added to this.

I have finally gotten in to do something about my degrading knees. I have an appointment to have an arthroscopy done on my left knee, and a referral to get the right knee done hopefully at the same time. This means that I am going to be off my feet for a period of time, but it beats having one done, and wrecking the other, and then vice versa, a vicious cycle. If I get both done at once even weight on both legs. There will be some trying times ahead but I look forward to better health at the end.

My neck has been giving me no end of grief, we have tried physiotherapy on it, and now I am on a waiting list to see an neurosurgeon to see if he can do something about it. There are vertebrae out of place and pressing on nerves, all ugly stuff, and not playing nice with the FM I can tell you. I look forward to getting that all fixed.

Recently... 

Mid-last year I started getting on my treadmill to do some walking at home. I started slow and for a relatively short period of time. This was for some basic cardio-fitness work. I have been gradually increasing the amount of time I have been going for and now I am walking for 30 minutes. I have also been gradually increasing the speed as well and have gotten up to 5.9kph (3.7mph). I have found the best thing for this to keep you going is that it need to be regular and at a time where you know that you can do it. I put my headphones in with music playing to keep me going. I have also found that it is useful to have a goal as well. My goal is to achieve the "legionary step" which is 6.44kph (4mph), but also to maintain this speed for an extended period of time. It is the historian in me that picked the speed. Goals are really important for motivation, and they need to be personal.

There have been some hiccups with my training needless to say, and there are days where I just can't do the walking, but it is important to recognise these too. The important thing is that you also need to recognise the difference between the "physically can't" and the "I'm just being slack, can't". This is the reason why it is important to have goals and motivation to do your exercise. Of course the goals need to be reasonable. I am not aiming to run a marathon, in fact I am not going to be jogging or running at all. Walking is reasonable for me so that is what I am sticking to.

Very recently thanks to a new friend Andrew, I have been going to the local hydrotherapy pool to do some exercises, and work on my joints to ease some of the FM. It is going to be a long-term project, but the results will speak for themselves. I am hoping that I will be able to get my wife to join me later on as I think it would help her too. Merely being in the heated water and being able to relax all of the joints has been an absolute blessing, even if it has been meaning getting up really early in the morning. If you get the chance to go to a hydrotherapy pool, just DO IT. You will not regret it, especially in the cooler months.

Some Notes

Just to polish this entry off I am going to give you some notes and things to think about. These are things that I try to think about all of the time, and especially when I am considering my FM. More so when I am reading about it, or discussing it with others.

1. Don't let people tell you that you can't until you have tried.

2. You don't know what you can do until you have tried.

3. Do things that make you feel good (and don't impinge on others feeling good).

4. Listen more than you talk.

5. All information is useful to a point.

I thought about giving explanations for each one of these, but I think, for the most part, they do not need explanation. If you have any queries about what I mean with regard to these notes, please feel free to ask in the comments below and I will explain what I mean. Fibromyalgia can be a debilitating condition, but only if we allow it to be, we need to stand up and not let it take control. You have the power to do this.

Cheers,

Henry.

If this is your first time reading this blog, I recommend that you go back to the beginning and read my introduction so that you may understand what I am going on about, just follow this link to my first post: https://alifewithfibromyalgia.blogspot.com.au/2009/11/introduction.html

Onward and Upward...

Greetings,

It has been a while since I wrote anything here and the last was a little bit "doom and gloom" for my liking so I will be aiming at changing the tempo a little and lifting the things up a bit. So, there will be some updates with the way things are going, as per usual, and then I will just have to see what I end up with writing towards the end, so good luck to both of us.

News: I have specialists, most of whom do not want to see me until next year. Awesome. Renal specialist wants to keep an eye on things but is for the most part happy with the way things are going. Respiratory specialist is happy with the way things are going so does not want to see me until next year. Endocrine/Bone specialist does not want to see me for at least two years. Hepatology specialist gets seen in a couple of days time and I do not think that there will be much new news there. So the methotrexate is getting increased to combat the sarcoid in my liver... not really that much difference to tell you the truth.

As for the lower abdominal pain, it seems to be on the retreat for the most part. There was some free fluid floating around there, or so the CT Scan said, but it seems to be settling itself out. Sure, bits of pain here and there still, but hell, it is only pain and I am pretty used to that. I am thinking that at the current rate that one should be off my list in a couple of weeks. I will be taking the CT to show the Hepatology people just to keep them informed and see if they have any ideas, I am not expecting much really.

Other news: I have my first official training day for my new fencing school this weekend. As of this weekend it really is a reality. This is one of those life-long dream things happening finally for me. It is just the first step on a much longer path and I am really looking forward to it I can tell you. The big part of this will really get going early next year. I have mentioned this school previously in other posts so I will not go on with it much.... alright just a bit.

Ever since I was diagnosed with fibromyalgia I have been looking for a job or something similar which would fit the random schedule which the FM tends to deal me. I figured it had to be something that I loved, but also something which could be managed around myself and my issues. "Normal" jobs just did not seem to fit the bill as it was always someone else's timetable, rather than one modified to my needs. I love my fencing, as anyone who knows me will tell you, addicted would be putting it mildly. So I figured if I could combine the "owner-operator" and "love of fencing thing" then I would be set. Looks like things are headed well in the right direction I can tell you.

I figure that the first thing a person with FM needs is something to get them out of bed in the morning. This has to be something which you love and just cannot think of a better thing to be doing. For me it is my fencing, or researching fencing, or doing something with regard to fencing. Go out and find what that thing is for you. It does not matter how small it is, or even what it is, if it gets you out of bed and makes you feel good that is a path to a better life.

Other people try and motivate us, unfortunately because they are not us they can not understand what is going on with us. It does not matter how close the person is, or even if they have the same condition, it is a personal thing. We can do our best to explain what is going on but something will always get lost in translation. So, the best place for the motivation to come from is within you. This is really the same for everyone, chronic illness or not, self-motivation is much stronger than any motivation an external source can provide. Find something that will motivate you from within and you will be surprised what you can achieve.

In my case my love of fencing motivates me and does a lot for my pain levels. I do not feel as uncomfortable, even on my worst days, when I am doing something with regard to my chosen passion. The focus required for what I do takes away from the focus on the pain, and as a result improves how I feel. Sure there are days where all I can do is research and read about it, but those are days in which I store up knowledge for the days when I can pick up my sword and do it. There are even days when I am lethargic about going to training or a tournament, once I put my armour on and pick up my sword and get going, those lethargic thoughts seem to blend away. Sure on a rough day I do not move as smoothly as I would like, and I sure pay for it afterward, but the hours with a sword in my hand are more than enough reward for me.

Find your passion, find your motivation, and go onward and upward. You may be surprised where you find yourself in the future and what you can achieve when you apply all of yourself to it. All you have to do is start.

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.