Condition blinkers

I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.

 

Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

New or nothing

One of the biggest problems I have had over the years of being ill is knowing exactly what is my MS, one of my many other conditions, age or a bug. I have always felt that it is all too easy to write everything off as my MS as so many doctors do. Until the last couple of years the bug has been an easy one to sort out from the crowed as well, bugs normally bring a temperature increase with them. I am now in my 50’s and I know there is a high chance of me being in the menopause, but I have no way of knowing. When I was 25 I had a hysterectomy so with no periods to give me a guide when I seem to be running a temperature I can’t be sure that it isn’t just a hot flush, rather than the type of temperature peaks you would get with the flue. I think like many women the menopause has always been this mystical thing way in the future, so learning about it seem somewhat unimportant on the scale of things, but it has turned into something that I now worry about, not a major right out scared to death worry, just a niggle there in my mind. So many things upset MS and I can’t help thinking that if I am one of the unlucky ones to react badly to it, will I then also have to deal with all my symptoms being heightened as well. I have never come across anything about the effect of hormones on autoimmune conditions, that could be because there is nothing to worry about, or like so many other black holes of information, no one has bothered to look at it.

Like everything else I guess I will be the one doing the discovery of what it means to my life with little to no guidance of what to look for. I have thought of sitting making a spreadsheet with all my conditions down one side and all the symptoms, if I can find all of them across the top. I already know that there are many cross overs but each condition also has unique things as well. The purpose of it would be to try and work out what is happening and which condition is dominant at the time. You may note I said thought about, I doubt that I would really learn a great deal but what it might help with is this type of problem, is it an as yet undiagnosed addition. I don’t know how other people deal with the what is happening now situations. New symptoms appearing, or even old ones returning are always hard spots to sort out in my mind. I always want to know what is happening, just as I threw all my self diagnosed possibilities at the doctors I have seen recently, I often find myself trying to understand what I guess is often none understandably, knowing why doesn’t make it any better, I guess that is just the way my brain works.

Finding the right line to navigate illness can be really difficult, if you don’t have any illness, it is easy to know when something is wrong. For example, as a women we are told to check our breast for lumps and pain not just in our breast but in the surrounding area. I get pain in the surrounding areas frequently, as part of the wonderful MS hug, but if it was cancer how would I know. An extreme example but one I think graphically describes the type of problems long term conditions hold. Now I could pester the hell out of my GP about all these things, but I am now deeply regretting having asked for help last April. If I had just got on with things I would be sat here now in exactly the same position, they have done nothing to help me at all. In fact the hospital visits made things worse, so what do you do for the best?