Fight for Life

 Greetings, 

It has been a while since I posted here, I have been somewhat busy writing and fencing, as usual. I have come to a bit of a block, and now I am figuring my way around it, just as I have done for all the other obstacles placed in my path. Fibro has sucked over Winter, but that was expected. Enough of the guff, time for the post...

Cheers,

Henry.

A Fight for Life

I spend much of my days either writing or fencing. This is the nature of my life, it is the life I have to me. The reason for this is that I have determined that I will fight for life. Not just to exist, but to live.

I have had some sort of illness or another, physical or mental, from the day I was born. The thing is that my parents did not coddle me, they did not try and prevent me from doing things, quite the opposite, they encouraged me to do things. They encouraged me to get out with my friends and have fun; they encouraged me to take up sports; and did what they could to support this process.

They encouraged me to try things and find out what I was good at, they encouraged me to succeed where I was drawn, not to be shoe-horned into some path I was not interested in. I decided I wanted to become an historian, not an accountant or some other occupation which would pay a significant amount, my parents supported my decision. This was evident even from when I was in secondary school, and further into high school. I took history subjects wherever I could find them, to increase my knowledge, to increase my critical thinking.

All of this imbued me with a drive for what I wanted, regardless of what that was; if there was a way I would find it, if there wasn’t a way, I would simply find a way. The concepts of “can’t”, “shouldn’t”, “mustn’t” and other such words simply waved a red flag in my face. I will admit some of this tendency did drive me toward trouble and things I really should not have, but each was a learning experience. Every time I failed, I learnt something from the situation. This drive has led me to the place where I am today.

I have sacrificed opportunities and different paths to lead where I am now. Some of those paths were simply closed to me due to my circumstances. I did not berate the situation, curse it, I simply found another way around, some other way to achieve what I wanted to achieve. I am not saying that I have not had my set-backs, times when I could have chosen better, times when I could have done better; no, this would paint the wrong picture of me, I am no saint, no genius, I am just a person who decided what sort of life I wanted and have striven toward it.

Is my life perfect? Certainly not. I still have struggles, and not only with my health. Am I yet where I want to be? Certainly not, I have found a path with no end in sight, a path that will only end with my last breath. This appeals to me that I will never find the end. The Wisdom of Silenus states that we should prefer to die early than know we will never find the end of the path, never learn everything, never do everything we want; I take this not as a reason to be depressed, but to accept the challenge that I will do what I can, I will do as much as I can before my life ends, I will strive to the dizzying heights, even if I never make it.

I fight for life. I want to live, not just exist, and if this requires me to stand outside the normal bounds, then so be it. I will strive for life; I will fight for every little bit of life I can get.

Was it worth it... Hell yes!

 Greetings,

It's been a while, I know. I have been busy writing for my Patreon page which has been keeping me occupied on the writing front. Not much there on FM to tell you the truth. Mostly stuff about fencing and social stuff, though there are some interesting things about disability considerations, and more coming no doubt. I tend to write what I am interested about. Enough of my waffle, let's get to the point...

Story:
Late May, I went to the Bundaberg Show for four days to help some friends with a demonstration of Renaissance fencing, which if you haven't read my blog before, is the thing that keeps me going. I write, and I fence, this is my life. So this experience resulted in me fencing twice a day, for about half an hour against two friends. Camping on a camp-bed. Oh, yeah, and travelling 5 hours by train to get to the place in the first place.

The weekend after this there was an event I went to, for another four days. More fencing all of the days, well most of them, but I am getting to that. Sleeping on a bunk that was too short for me, and travelling to and from by public transport again, as I am medically-disqualified from driving due to my FM. 

The result:
Fibro-flare. I ended up with my arm in a sling for one of the days of the second event, and not fencing. Oh yeah, and a week's recovery, which I am just coming to the end of as I am speaking. Not to mention desperately needing to go and see my physio.

Things I know:

1. Next year the same two events will happen again.
2. Next year I will likely go to the two same events again, and do it all over again.
3. Next year I will likely have the same result unless my FM is gone (yeah, right), or I am much fitter (maybe).

Conclusion:

Some would say I haven't learnt a thing from my experience because I am willing to do it again. Some would say I should learn to look after myself better. Some would say I shouldn't push myself so hard. I say they are "Nay-sayers."

The only question I have to ask is: Was it worth it? If the title of this article doesn't give you the answer, let me repeat that, "Hell yes!" I had one hell of a lot of fun fencing with my friends at the Bundaberg Show and spending evenings with them chatting. I had a lot of fun fencing with old friends and making new ones at the event that followed the weekend after. 

Momento mori - you will die. Yes, so go out and live while you have the chance. Take life by both hands and squeeze every drop of life out of it; be in every moment. Marcus Aurelius said, "Live every day like it was your last." 

Cheers,

Henry.

3 Months Later... A new symptom...

 Greetings,

It has been a while since I have posted on here because I have not really had all that much to say about my FM... days. I dislike calling them "struggles" because that gives the whole thing too much power over me. Sure, I do struggle some days, but I like to think I am on top of it most of the time, even if this concept is only in my head, and that is mostly enough. I have found if I keep myself positive, then that is a good part of the battle. Yup, if you haven't figured it out yet, I am a fighter.

I am the sort of guy who sits on the waiting list to go into the "Persistent Pain Management Clinic" for an extended period of time. I had a second referral sent, because my first one expired. I was told about the appointment well in advance, and decided to investigate pain, and write something about it. You can read it if you like, it's called "On Pain: A Personal Discovery". It was a most interesting investigation. When I went in there for my first appointment and had a chat with their psychologist, she looked at me like, "What are you doing here?" she actually said there wasn't much they could do for me, because I already was doing all they would be teaching me. I dropped a copy of the investigation off for them to read. My next appointment was with the physiotherapist, they gave me the same look. So, I was promptly discharged.

Anyway, I am rambling as I am want to do when I write my posts, I will get back to the point. It looks like the insomnia associated with FM has decided to kick in. My sleep has gradually gotten shorter over the past month or two. When it was getting down around 7 hours, I was a little concerned. This morning I woke up at 3 am, after going to bed at 11 pm the night before. Looks like it is a "thing" now. I will just have to go back and add it to the list I suppose, at least if it settles in without any answers from the doctors. My sleep specialist is not going to be happy. I just hope they don't decide to take my VPAP machine off me. Nope, no typo, I don't have a CPAP, I have a variable pressure machine.

I have Obstructive Sleep Apnoea like other people, but I also have Central Sleep Apnoea as well. The second one means that occasionally my lungs get bored, and just decide not to work. Yup, lots of fun. This explained the really bad sleep I was getting before I was put on the machine and the reason the CPAP machine I was first put on didn't work. Anyway, I think that is enough of an update for now. Still writing, still fencing, my writing is going mostly to my Patreon page, which you should really have a look at if you like my writing. Anyway, I hope you have a comfortable, if not pain-free day.

Cheers,

Henry.

What is a Disability Advocate?

 Greetings,

I thought this subject was pertinent for this blog, even though I have another for my political and social ramblings. However, I want to talk about a disability advocate, and why it is important all of us stand as disability advocates.

No, it doesn't mean you need to go stand on a street corner with a sign, or go hassling people for signatures. We can all advocate in our own ways. I have been posting on my wall, on Facebook, one image per day since July about disability issues, or things related to disability issues. Trying to get some people to think about the issues I am showing. I figure if I can't get my friends to stop, consider, and even care a little, there was little point in me trying to get strangers to do the same.

Advocating for disabilities means, leaving designated spots free for people who need them. Not just carparks, but also seats on trains and buses, and places for wheelchairs and scooters. It means being aware of those who use these devices, and encouraging, and even insisting that others be aware of them as well.

It means being aware of how we speak, not only about others, but ourselves as well. We need to be aware of words which put people down, and also those that lift people up. There are guides available on the internet from the US and Australia as well, not to mention other places. There is even one from the United Nations, which should not be surprising considering the presence of the Convention on the Rights of People with Disabilities being present. 

Being an advocate is standing up for others, and standing up for humanity. Disability knows no differentiation of sex, race, colour, creed, religion, sexual preference, social status, or any other way people might want to divide us. You will find people with disabilities among all of these groups, so in standing up for disabilities you are standing up for humanity, and the best of humanity.

One quiet voice, can turn into a roar, when they support a cause they believe in. The same voice becomes deafening when it is supported by other voices. Become the voice that begins the roar.

Cheers,

Henry.

Let's Talk About Pain...

Greetings,

Be warned this one is coming completely off the top of my head, so it is likely going to be a rambling discussion of subjects such as Pain Scales and other such things. Further, there will be other such topics of discussion when it comes to pain present here. Quite frankly, you're just going to have to read along to find out. If you want something substantially more structured, and a hell of a lot longer, have a read of the document I wrote. This one does not appear on my Patreon site because I wanted everyone to read it. I might put it up there as a public post, just to get a larger audience to read it.

Like the "Disability Conversation," the "Pain Conversation" makes people uncomfortable. In some instances it is because it results in the infamous "pain comparison" i.e., my pain is worse than yours, or I have experienced worse pain than you have. This comparison of pain is often a point-scoring exercise, rather than an exercise in understanding which is what is needed in a conversation about pain. If we can understand pain we can move toward dealing with pain.

Rather than a "pain comparison," there needs to be empathy between the people in the conversation, to try and understand the pain that the other experiences. The direction of such a conversation should be directed toward ways the pain can be dealt with, how the pain is removed, or how it is shifted so the person can get on with living. This is the important part, ensuring pain does not control our lives, that we don't just exist, that we live.

The Pain Scale in its classic form is a set of numbers from 0 - 10 where each represents the level of pain an individual happens to be in at the time. For chronic pain sufferers this scale is odd, strange even, as this mythical 0, often does not exist for them unless they are unconscious or anesthetised, or in some similar condition where the brain is inactive. Where there is chronic pain, the Pain Scale shifts, it does not shorten, it shifts, or can shift.

If an individual has "background" i.e., permanent pain, at 3, this is their new 0, therefore the 10 in their scale can be 3 steps above 10, and sometimes is due to being "used to pain." In other cases it works in a different way where the scale simply gets shorter. The other numbers are cut off, 3 is the new 0, and 7 is the new 10, because their pain has increased and their ability to cope has reduced.

In my case my Pain Scale is simply f*cked-up. Then again, I have fibromyalgia (FM), so most of my readers should not be surprised if they have been reading my posts. I have background pain all of the time, the level of which floats, depending on the day, weather, and activity. The only time I have 0 level of pain is when I am unconscious, anesthetised, or asleep (with VPAP on and night-time drugs taken). Pain usually wakes me up in the morning.

How do I deal with my "life of pain" as some writer put it? Depends. Some of the pain I can move to the back of my thoughts. I just tell it to go away because I have things to do, I am simply too busy to be in pain. Other times, I save up my "spoons" and blow the lot of them on activities I love, knowing that I am going to pay for the experience. 

Some will claim this is a "boom and bust" lifestyle and it is not good for me. My response is that I am a quality of life, not a quantity of life, sort of guy. I am going to live my life. I am not going to spend it restricting myself because an activity might hurt, or because I know it does, even though I enjoy it.

There will be those who will say, that this is not your way. No, it isn't. This is my way of living and having a life. I live and I do the things that I love. I contribute to society where I can through my activities and through my involvement with other people. I do my best to not let pain get in the way of these activities. 

I will not be bound. I will not be restricted. I will find ways and means. This is my way. I find each struggle and obstacle, not as a hindrance, but as a challenge laid before me. They are a chance for me to overcome these obstacles and struggles, but they are also a chance for me to overcome the greatest challenger of my life, myself. Pain is just another part of me that is a challenge to defeat. Look forward, not backward; look toward the life that is before you. Love your life. AMOR FATI - love your fate. 

Of interest, I went to the Pain Management Clinic (or whatever they want to call themselves this time), I saw the doctor and talked about my medications and so forth. She changed one of my medications, and my GP and I are discussing whether or not we will change another. I saw their psychologist, and her response was you are doing all that we teach, "What are you doing here?" I saw their physiotherapist and told her about what I do, she also said I was doing what I needed, "What are you doing here?" They both reported back to the doctor, and I was shortly thereafter discharged from the clinic over the phone... might have helped me dropping that 88-page monster I had previously indicated. I believe that my understanding of pain is quite complete, but I am always learning.

Cheers,

Henry.

"I am Disabled"

Greetings,

There are people out there who will instantly reel in shock from those three words stating, “No, you should refer to yourself as a person with a disability.” To which my answer is and emphatic “No.” There is a story behind this and also a statement. 

I have always been chronically ill, it has only been the illness which has changed. I started off with asthma when I was young (misdiagnosed as chronic bronchitis to begin with). I spent most of my childhood bouncing from the doctors to home to hospital, so much so that the hospital got nicknamed my "second home." It may not have helped that I was having none of it, and was out doing what boys of my age were doing, playing sports, camping and generally having fun, but I sure as hell was not going to live in a bubble, as much as one of my friend's mothers decided she was going to try. I am not the sort of person who usually just gives in to my illness and goes and does nothing.

Once I just started to get my handle on this, as I grew and exercised more, I started getting pain in my fingers and my wrists, over a period of time this spread and began affecting all my joints. I got bounced from one rheumatologist to that, one specialist to that. No one had any answers in the beginning. The only thing that they could tell me was it was not in my head, there was "something" wrong. Not helpful in a world that wants names for things to put on paperwork. I proceeded with life as best I could denying the pain as best I could, denying that there was really anything wrong. It would take years before a) they gave a name to my problem (fibromyalgia) and b) before I would acknowledge that I had a disability, as much as I had friends (and some family) telling me so.

The fact that I can now own that title, the fact that I can now say, "I am disabled." gives me power. This is a part of myself that was missing for years. Now that I have a greater understanding of myself, I can do more, be more. I am embracing it even more these days. Waving it in people's faces to let people know that disabled issues have not been solved, and that we (as in the disabled community) will not be pushed aside. 

Go have a look at the United Nations' Convention on the Rights of Persons with Disabilities and the Americans with Disabilities Act 1990 or the Disability Discrimination Act 1992 if you're in Australia, read them well. Then, realise people with disabilities are still being ignored and denied human rights and freedoms other people take for granted. Why? Because people think that so long as these laws are followed, that's enough.

Now for the statement:

How I refer to myself, how I identify myself is more important than any label any other person might want to give me.

I find power in the statement, "I am disabled." Having a disability is a part of my life, and one that took me years to accept. It is not about being alone, quite the opposite, there is a community of people with disabilities. Having a disability just another state of being, it is just another state of being human. No different to being tall, short, thin, fat, black, white, or any of the many other labels we might use to describe ourselves. The state of being disabled just happens to have some other issues to contend with, most of which can be overcome if people in society have a care and consideration for their fellow man.

"Disability" and "disabled" are not a offensive words, people's reactions to them are, as are people's reactions to people with disabilities. 

People are concerned about "politically-correct" language, and don't want people to call themselves "disabled." Well, as a disabled person, I will say that that is not your choice, it is my choice what I call myself. It is my perspective which gives meaning to the statement of my identity, you don't have to understand it, it really only has to have meaning for me.

Cheers,

Henry.

Monetisation: A Question of Requirement

Greetings,

I have previously discussed the question of what my time is worth, and also a post about whether or not my time at university was a waste of time. I have been happy cruising along with my payments from Services Australia, under the auspices of the Department of Social Services. Yes, regardless of their re-branding, change of logo, or whatever, they are still the Department of Social Services, or DSS in Australia. However, more recently, there have been comments about what advantages I have, what privileges I have, and quite frankly with the way that the government has been managing the country, I have been feeling the squeeze on the more social/comfort parts of my life.

The result of all of this consideration? 

There needs to be a little background before I get to that. I write four blogs at the moment, this one, "A Fencer's Ramblings" my fencing blog where I discuss fencing and training in fencing, and all of the details that go along with that pursuit; "A Life with Fibromyalgia" where I discuss some of my medical history, and how I deal with my chronic illnesses, primarily fibromyalgia; and "Olde Wordes: An Examination of Elizabethan English" which began as a foundation for writing the Elizabethan portion of one of my books, which I published, His Practice in Modern and Elizabethan English. This was the second book that I have published, the first one was a book version of a series of my fencing blog articles, plus some extras added in, entitled Un-Blogged: A Fencer's Ramblings.

I write a lot most of my writing does not see the light of day, unless I find that the articles are of particular interest to a particular group. You can find a profile of me on academia.edu with more of my articles; these are more of a scholarly bend to them, though at least one of them is a bit of fun. The point here being that I have written a lot and seen very little in the way of financial recompense for the hours of work and the thousands and thousands of words I have written.

I have begun a profile on Patreon. I will be putting my more considered and researched articles on this site where people can pay me for the effort that has gone into producing the articles. I will not be removing articles from sites where they are already held, unless I do updates or improvements. In this case the newer versions will appear on the Patreon site for access to those people willing to pay me for my time and expertise.

I have no doubt that there will be some who will scoff at these efforts and who will make comment about the monetisation of my writing. To these people, I will say that I am simply expecting to be paid for the work that I am putting in, for the information that I am supplying, for the expertise that I am supplying in the process. If that is not sufficient explanation, then they can simply go elsewhere, as they are not my concern.

I will still put articles on my various blogs, but they will not be of the same size or quality that they used to be, they will be shorter, and likely pointing to more significant articles on the Patreon site. If you want someone to blame for all of this, you can blame the government; all the rich individuals who don't want to pay their taxes; and all those who still believe that people with disabilities choose not to work, and choose to allow their disabilities to impact their lives so much that the government keeps disability payments low, so low that they are under the taxable threshold, while the prices of basic food and accommodation rises.

Cheers,

Henry.