Sometimes we are given pieces of information, even about ourselves, that we dismiss, put to one side labelled, “interesting but so what”. That was something I did 14 years ago when I was in the midst of being diagnosed with Fibromyalgia. I actually left that day with two diagnoses, firstly, the one that I left concerned about and desperate to investigate, Fibromyalgia, I had never heard of it, nor did I realise just what its potential was. I admit freely though that just like the second one, I found myself within the year, dismissing it, that was when I was told I also had PRMS. So what about that second one, the one I though and put down as just interesting, well that was HMS. To me, those three letters meant only one thing and as far as I could tell, I hadn’t suddenly been transformed into a large grey hulk. For those out there who don’t know what it is, any more than I did when I heard the letters, it stands for Hypermobility Syndrome. In English, my joints have the ability to not stop where normal joints do, but to go past that stop point. Most of my joints can go past that “normal” point, but to me and many others, it had always been known as “double jointed”. Clearly, I had been aware of it for most of my life. You can’t miss things like people pretending to be sick or cringing when you do things with your hands, that shouldn’t be possible. It was kind of my party trick as a kid, I just couldn’t resist it. I used to be able to take a fingertip and push it round to settle in the gap between the next two neighbouring finger. It looked like I was tying my fingers in knots, not to mention that without trying at all, I could raise my fingers from level with my hand backwards and upwards to what should be an impossible angle. Other than my hands, I could also do things like scratch my own back by first raising my arm above my head, then reaching downwards to my spine. Then there was my favourite one, putting my right arm above my head again, but this time, approaching from the left side of my head, scratching my right ear. All great tricks when you’re a kid, but not of any importance at all, until now. I am now paying for it.
I had forgotten that the last time I had to use my wheelchair, that I had a lot of problems with the joints in my fingers. Nothing terrible, they just got really sore and tight feeling, their mobility has also become restricted and somewhat stiff. I guess it’s a little like arthritis and the more I use my chair in any one day, the worse it is. I was already having pains in my hands, I believed it was from all the typing I do. so adding in the pain from my chair, well evenings are uncomfortable things. If that had been it, I wouldn’t be writing this at all. What has prompted this, is the pain that I am suddenly getting and my concern to what is happening to my thumbs. Using a manual chair, is one of the few things I can think of, that actually puts pressure on your thumbs. Other than clearly using them for gripping things, thumbs don’t do much that is strenuous, so there isn’t much to annoy them. I have known loads of people with arthritis and similar conditions, but not once have I been aware of them talking about pain in their thumb joints. It is always their fingers that I have seen them massaging and holding on to. Thumbs, always seem to be separate in every way. My thumb joints are hurting and they are doing one other thing as well, they are jumping partially out of joint. Anything, that means I tuck my thumb under my palm, is almost instantly painful. It’s not the pain that I am finding upsetting, it is on the movement back out, that gets to me, as there is this distinct and almost self-nauseating crunch of bone on bone, as it snaps back into the correct location. It seems as though my childhood pranks of upsetting others, is now directed at myself, but I’m not trying to do anything, out of the normal. I’m reasonably sure that the pressure being put on them when I am using my chair is loosening the joints slightly from their grown up stability of age. I frequently feel them going in the other direction by just a tiny amount, especially if I manage to get myself stuck somewhere. Luckily, that is something that is happening less and less, but it appears, that there is nothing in life, that doesn’t come back to bite you eventually.
I know that without a doubt that I am lucky in the fact that this only ever seems to have badly affected my arms and hands. Having said that, I did once dislocate my knee, but that was after falling downstairs, so I dismissed that one totally. When I was young, my ankles might well have been made of rubber, as I was forever twisting them. It even got to the point, that I had a couple of years, where A&E was sending me back repeatedly to the physio. Once I was out of my teens, it all appeared to stop. Although no one ever said anything, I sort of told myself that it had all been about tendons and the process of growing into my own body. I had reached the height of 5 ft 9 inches very rapidly when I was just 12, and I never grew again, so it made some sort of logic. When the Dr told me that I had HMS and I had read a little about it, I realised the truth. In fact, it was only a few weeks ago, that I suddenly made sense out of something Teressa had told me. She had been talking about the problems she has with her knees, something she had mentioned before, but I hadn’t put them together. Her knees jump out of joint and has to head to the hospital to have them put back, it had happened again. At the time, I told her to blame her father, not me, as my knees are fine, but I had totally forgotten about the HMS. It wasn’t until my hands started to hurt again, that I remembered. I guess, just like her beautifully curled toes, this is something else, that my genes have given her. Sorry. It also, make sense out my Mothers constant complaints about her hands, and the fact that her doctor, quite wrongly in her opinion, that she didn’t have Arthritis. I just thought at the time, it was her hypochondria, it may well be, that she too has it, just no one spotted the real culprit.
That is one of the problems with modern medicine, it is constantly giving names, to things that we once thought was just one of those things. It is really not surprising that current generations, think themselves sick. I am quite sure that all the conditions that we have these days, all our ancestors did too. Until recently, the family doctor didn’t have the means to diagnose us, those that did only saw the most wealthy and they were happy to pamper them. The average person out there just got on with it, they didn’t complain, because who was going to listen to them. They couldn’t afford to be pampered and when everyone around you is living with the same, it is just normal. Pain was just part of life and you got on with it. For many, that hasn’t changed, as I am perfectly sure that the reason that I can say I have a list of 13 or 14, I can’t even remember the right number now, but all different conditions, is because I spent so long trying to get to the main problem, my PRMS diagnosed.When you carry out the wrong tests, you get the wrong answer and in my case, that meant loads of correct but at the same time incorrect diagnoses.
It wouldn’t surprise me at all if a random group were taken off the street, and tested for everything, that probably around a quarter of them, would be diagnosed with things they didn’t even know they had. I’m also quite sure, if I was put in that group, they would still find more for me too. For a lot of people, just being told that they have this or that syndrome or condition, would be enough, to start acting ill, to use it as an excuse for not doing this or that. I’m not saying they would do it on purpose, but we all associate conditions with illness, only those who live with them for a long time, know that isn’t true. But follow the logical trail, start telling someone they have this or that, then add on another and another, and they will slowly become ill. Unlike our ancestors who appeared healthy, but weren’t, they might have the same conditions, but they would be ill, just because they know. In a way, we have become victims of the very thing that was created to take care of us. If you want proof, then just think of all the people you have ever known, now add the common cold. There will be a section of those people who act as though they are dying and a section, who don’t even seem to notice it, they just get on with life. Imagine if you told those same people that they had a “syndrome” anyone you choose, what do you think their instant reaction would be, without even knowing what it really is? As they say, ignorance is bliss, not always true, but for some, I totally believe that it is, especially when it comes to their health.
I am a firm believer that people have the right to know exactly what is going on in our own bodies, but I do fully understand the doctors who instantly roll their eyes, when someone says they have “checked it online”. In this age of information at our fingertips, there is a huge problem of getting that information wrong, and quite simply knowing too much for our own good. Humans are suggestible, we all instantly read the worse case scenario and ignore the line that says, this applies only to a few, or we tell ourselves, we are the few. In some ways, I am glad that it took my doctors nearly 20 years to diagnose my PRMS, as by the time they did, I already knew how to live with it, as though it didn’t exist. My health didn’t get worse post diagnosis, nor did I suddenly start acting as though it had. Nothing changed for the first couple of years, then it picking up in speed, but post diagnosis, I just got on with life as I did before. I can see how just learning to live when you are told such a thing, can be hard mentally, but the truth is, nothing has changed overnight, you just have a name for your monster. It also doesn’t matter how many monsters you have, you are still you, that is actually the hard lesson to learn, not that you are ill, that takes care of itself, whether we like it or not.
Please read my blog from 2 years ago today – 25/10/2013 – Is this right?
I don’t think I have had a single hour free from the pain or at best discomfort from my diaphragm in the past month. At it’s best level it is just how it is right now and of course, this is probably the most difficult to….