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

Coming Back... from the Semi-Dead

Greetings,

I have been feeling like garbage of late, and every time I go and see a doctor, they seem to have either "situation not changed" or bad news to tell me. Needless to say I have been going through a bit of a bout of depression and it has been affecting things, well, a lot really. I had been finding convenient excuses not to do things, or putting things off, or just not doing things at all. So I had been coasting, doing only what I really needed to survive. In my books this is being semi-dead.

Yesterday I got back on the treadmill after an absence from it for about five months. So I decided a casual stroll would do the trick to warm things up again. So I did 20 minutes at 4.5 kph, this results in 1.49 kilometers or thereabouts. Sorry about the metric measurements, its what I mostly use. This is about where I like to start with the exercise thing. That was it.

The plan is that any night that I am at home, 6pm will roll around and my alarm on my phone will go off and I will go and get on the treadmill again. This is to get some of my long-lost endurance back again and also some fitness in my legs as well. Needless to say, as I progress the time and speed will increase, more than likely it will be the speed that increases first.

Sounds simple right, yes, it is. That is the point. You have to start simple and then work up to things. At some point in time I am hoping to advance things to a stage where I can even do the treadmill on nights when I have training and not have the threat of being too stuffed to teach of train. More to the point I started, and that is the bigger thing.

I had not started because sometime in the next year I am going to get my knee operated on which is going to put me out for some weeks at least. Next there was a threat that I might have a brain tumour, turned out to be a false alarm, YAY! My neck is still a mess so off to a neurosurgeon I go to see what can happen about that, or at least a referral will get written and I will go on a waiting list. You get the idea, things just kept piling up higher and higher (this is just the short version by the way).

Only way out of this one was to stand up and decide it was not going to run it all for me. Yes, I will end up off my feet for a while, but until then I can get back doing things and the fitness will help my recovery. Sure my neck is going to be irritating, but there are ways for coping with that. It was simply time I got off my butt and did something that I could do about it all, not wait until some medical professional said I could. There will be more training ahead for me, and more fencing too, because I can do it.

So, what can you do?

Cheers,

Henry.

I Really Hate That Guy

I really hate that guy...

He smiles when he is in pain and tells everyone he is, "Fine" or "OK". He is polite to people when he would rather be elsewhere and puts a smile and tries to enjoy himself. He is also polite to people just because it benefits other people, because he does not want to upset those people or cause a problem for those people around him. He keeps his mouth shut when there are times when I would have told people off in some of the strongest language. He does not tell so much that he could. He stays around when he knows it would be so much easier to walk away. He wears the right clothes at the right times, trying to play just another person among the other people.

That is the guy I put on to cover what hides beneath. Sometimes, I really hate that guy, but he can be really useful as well.

Cheers,

Henry.

Pain to Power

Greetings,

I know it has been quite a while since I have put anything on this blog, I have been having a lack of inspiration for anything of relevance to write. My fencing blog (afencersramblings.blogspot.com.au) seems to be so much easier to write for some reason. I am guessing that this one is personal and I do not know exactly how much of my personal stuff people want to hear about. I am really not the sort of person who likes to sit around complaining about stuff. I write here to inform and to give others ideas about how to deal with things in their own lives. So on to the subject of the current post before I get too side-tracked...

The purpose of this post is to look at how we can turn our pain into power. No, I am not talking about working a generator, I am talking about using it to motivate and to make us do more rather than withdraw into our shells as we often want to. This may seem very strange to some, as soon as the pain starts they stop because it hurts and therefore the concept that the pain can make them powerful is going to be rather alien to them. Obviously for me, not so much.

"Work through the pain." How many times have you heard this statement? It is often proposed by gym-junkies and the like when they are exercising. They are talking about pain which is developed by fatigue or a "stitch". This is not the sort of pain that people with fibromyalgia (FM) and similar conditions are familiar with. For them it is nerve pain, much more painful, and often longer lasting.

Step 1: Choosing

The first part of turning your pain into power is that when the pain strikes you have two choices. No, actually you really do. You can stop what you are doing, or you can continue. If what you are doing is not particularly pleasurable or you are not particularly motivated to doing it then stopping and saving your energy is probably the best option. Save your energy for battles you want to pick. If you are doing something that you want to be doing or is pleasurable to you and you are motivated to do, then not stopping is probably an option. You have to choose not to stop.

Step 2: Energy

The next bit is having a look how much energy resisting is going to take and how much you have in reserve. Time to "count the spoons" as some would put it. Resisting the pain and continuing is going to take energy, and in some instances it is going to take quite a bit of it. The questions you have to ask yourself are: Do you have this energy? Are you willing to spend it? Are you willing to put up with the consequences of spending it? Is the outcome going to be worth it? The last question is actually the most important as far as I am concerned, the rest are not so important, but that is me.

Step 3: Spending the Energy

Out of all of the steps this is the hard bit and takes the real determination. This is the bit where most people will feel that they have failed, or will quit trying and so forth. This is the bit where you stare the pain down and tell it who's boss. This is the bit where you look it in the eye and tell it that you are going to continue what you are doing until you want to stop, not until it wants to stop you. This is going to take determination and energy to keep going. Most importantly believe that you can do it and do it.

Step 4: Downtime

After any energy expenditure you need some downtime. This will allow you to recharge the batteries a little. At this point in time you should not be thinking about how you went, only about resting and recharging. To tell you the truth, this is the bit that I have the hardest time with, I always feel that I should be doing something. Most of the time for me it is "crash"-time rather than downtime, and I do not recommend it. Take time to rest instead.

Step 5: Evaluation and Preparation

After you have had some time to recharge your batteries you need to have a look at how you did. A responsible person always evaluates what they have done and learns from it. Most importantly, this is personal evaluation. You do not need to, nor should you, compare your successes with anyone else. Please notice that I have not mentioned the word "failure". If you did a little bit more than you would have done because you chose to. You have a success. The successes do not have to be big, the just have to be present. Find out what you can do differently next time to improve your situation so that you can do better. The next part is preparation and preparing to make the same choice again, because it will come around again, and you have to be willing to make the same choice again. The more you do it, the more motivated you will become and the more powerful you will become. Hence pain to power.

If you are reading this and think that this is an easy sort of thing to do, you are kidding yourself. It is even more difficult if you are not prone to resisting the pain and letting it have its way. The method I am proposing here is hard, and it takes time, but it is about standing up and taking power over the pain rather than letting it have all the power. No, I am not saying that you should ditch all your medications, that's crazy, but the power of your own motivation can help a hell of a lot.

I am proposing a method that works for me. Now be warned I am a stubborn sod, any one of my two siblings will tell you this, as will many of my friends. I hate being confined by things. Most of all I hate being confined by my conditions, thus I fight against them. Now a lot of the time this can land me in some hot water, you will not posts about me talking about "crashes". This is because I push the method that I am proposing to the extreme and then suffer the consequences. What I am proposing for you is to use it in a much more measured fashion. Have a go, what's the damage it can do to try?

Cheers,

Henry.

A Victory at Last... Physiotherapy really works.

Greetings,

Yes, you read it right, I have a victory at last. My regular readers would have read about the problems that I have been having with my knees being quite painful for quite some time. They would have also read about the awful threat and actual happening of me having to use my walking cane for a period of time. Well, I can finally report a victory on that front.

Some months ago, March by my accounting, I managed to get into see the Allied Health Department at the Mater Hospital in Brisbane for an assessment on my knees. After the assessment they decided that they would trial me on three months of physiotherapy to see if that would help before going to send me to see the orthopedic surgeon to see what surgical options there were. I liked this idea as the idea of them cutting open my knees was not my idea of fun as it involved weeks of being off my feet.

Off I went to the Physiotherapy Department. Horribly helpful people, obviously not well-informed about all of my conditions. Sure they got told about my fibromyalgia, but not about the hyper-mobility and the marfans syndrome. These can make some of the exercises a little interesting and also some of the stresses on joints a little interesting. Once these were dealt with things got started.

My physiotherapist Anne was great. Rather than going straight for the knees she started with my posture and looked at my feet. Seems my feet were rolling inward resulting in my knees doing a similar thing, more stress on them, so we started there. My feet have mostly been good aside from the occasional dislocated/bruised toe, forming bunions, long feet and long toe issues. First we did some exercises to convince my feet to start "standing up" and rolling out. This also did a bit of work on my ankles as well, not a bad thing. Some taping was involved which worked a treat.

Result, I now have orthotics in my regular walking shoes to keep my feet in the right place. This helped a bit with taking some pressure off my knees. Next bit, as a part of this was gaining some control over the muscles around my ankles and the joints themselves. Also stretches were involved of various muscle groups in the legs. Ask my fencing students, some of them are now being subjected to them.

With the feet and ankles on the mend the knees were next. This is where the real work started. Lots of exercises lots of repetition and lots of posture correction. If you are a fencer, and your teacher says "Get your knee turned out." Just do it. It will save you a lot of time and effort later on. So now I have a bunch of exercises to work on groups of muscles and also stretches to also keep them nice and limber. They were horribly tight previously, I never noticed how much.

The end result of all this is. When you go to the physiotherapist and they give you exercises to do. Do them. They do work. They will help. I was discharged from the Mater Physiotherapy Department today. Aside from the usual fibromyalgia annoyances which I have to put up with anyway my knees have never felt better. I will be keeping up with the exercises and stretches because I do not want them to go back to where they were.

Cheers,

Henry.
  

You Know You Have Chronic Pain When... (Part 3)

Greetings,

It has been a while. This is the continuation of my list from the last part, which I started a while ago. You can read the first part here: http://alifewithfibromyalgia.blogspot.com.au/2015/10/you-know-you-have-chronic-pain-when.html and the second part not too far further along.

16) Your partner gauges how much pain you are in on the basis of how many things you have threatened to destroy, how many people you have threatened to kill recently, and whether this is above "normal".
17) The difference between a nervous tic and an indication of pain is usually the intensity.
18) When you take pain medication and the pain actually goes away it feels "wrong".
19) Sometimes it is just a question of what is going to hurt the most in the end.
20) Other times it is a question of what is going to hurt the least in the end.

Well, that's 20. I suppose I should do a "list so far", which I may do at some point in time. If I think of any more once again, I will add them here again in batches of five.

Cheers,

Henry.

Politics... Grab the Money and Run

Greetings,

RANT WARNING!
Please excuse me as I let off some steam about Australian politics and politics in general. This will have some relation to disability services in my country and may serve as a lesson to others.

Politics in Australia seems to be at the moment, grab the money and run. Or to be more exact, pay-off our fat-cat friends, rip the money from the most undefended of the country, and then when we get removed, let the country pay for our life-styles in retirement. I do not know exact figures but I am going to estimate that millions, if not billions, of dollars have been paid to media magnates, and mining moguls, while the normal Australian is told to tighten their belt. The DISABILITY pension has become more and more restricted, not to mention if you are under 35, magically they will review you and kick you off it to work because, "You are too young to be on a pension." This among other things. Then when they retire, we are expected to pay their pensions, which they get before the retirement age that they set, as soon as they quit politics. Seems if you are a politician the rules just don't seem to apply.

So let me get a little more on target...

To qualify for the Disability Support Pension (DSP) in Australia, you need to achieve 20 points on one table, which they have adjusted again to make it more difficult. These are the Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011, these can be found here. What this means is if you have, multiple conditions which combine together, rather than a single condition alone which causes you issues, you won't get it.

Under the previous tables there were individuals who have since been taken off the DSP, mainly because they were under 35 who had previously gained it due to medical issues of a spinal nature. The tables have been tightened so much that there are people who are in wheelchairs who do not qualify under the new tables and have been removed from the DSP and placed back into the workplace, and often with little or no support.

So while the rest of Australia tightens their belts, and her most vulnerable individuals suffer our politicians go on and do what they think is "best for the country". In my opinion they are doing what is best for their bank accounts and their futures with their nice safe pensions which the Australian population has to pay.

So, I usually complain about people making complaints and giving no solutions. I will give a solution which will solve many of the problems. Make the same rules apply to the politicians as apply to the ordinary Australian. Same age for pension. Same restriction for getting paid pension and other benefits (residency and means testing for example). Reduce the pay of politicians down to the same rate as any other government administrator.

Cheers,

Henry.