Thanks for getting it wrong

I feel kind of odd today, as although I have had two nights totally undisturbed and only one short break last night around midnight, I find myself feeling still tired whilst reasonably rested yet still in pain, rested and high pain don’t normally go together. I don’t know if I am just being lucky and getting the worst of the pain during the day, or if I am so tired that my bodies outcry for sleep is winning hands down, mind you, when the alarm sounded I was clearly in pain as I tried to reach the clock to hit it, pain like that doesn’t appear out of nowhere. Everything is still centered around that 12 inch band of lower ribs and upper stomach, but last night just for fun, my left leg thought throwing spasm that required me to lean forwards and apply pressure to my thigh would be funny. Let me tell you this, there is nothing funny about having to crunch up your midriff, just to be able to reach your leg when both are in pain, I am not sure which has lost its sense of humor, me or my body, but one of us has become rather warped. It’s odd how our reaction to pain changes as we get older, I still remember as a small child feeling as though I was going to die when I caught my finger in the kitchen door, and how my first experience of adult pain whilst giving birth to my first son, made all the pain I had felt before fade into nothing, both of them seem kind of laughable these days. Don’t get me wrong, I am not saying that the pain I live with every day is as bad as labour all the time, but there are peaks that do make me wonder why I made such a fuss over it. Plus there is at least something at the end of labour that makes you forget the pain with great ease, there is nothing at the end of a bad bout of pain other than the knowledge there will be another to get through in the not so distant future.

I know that my view of pain has been warped somewhat by the fact I lived so many years with the misconception that there was nothing the doctors could find and there for there was nothing wrong with me, therefore, well therefore I was a wimp and clearly everyone in the same pain I had. When you start from that point well pain is an odd beast as you don’t really have that inbuilt guide that tells us what it really means. Pain to me had become something that all I could do was ignore it and strangely when you treat it that way, you actually can ignore it on the surface at least. As the years went on I got used to feeling spasms and pretending that nothing was happening as I didn’t want to look weak, I had this determination that I had to be strong and I had to get on with life. I pushed through everything, flares the lot, at worst I might take to my bed for a couple of days telling everyone that I had the flu despite the fact I clearly didn’t have a cough or a running nose, I always got away with it. Everyone gets to know you as the person who doesn’t stop, who doesn’t give up even when things are really tough and once you have built up the reputation, it actually gives you a lot of space. People don’t question it when you do shut yourself away, as they just accept that it has to be something serious and you clearly are not just taking a sickie. It is also amazing how easy it is to get people to believe that the doctor has said that you have a virus, as no one can prove that either way, so being at work and not your usual bright and breezy self for a few weeks is cloaked once again. I learned how to act a though I was well, even when in private I clearly wasn’t. I didn’t start covering things until I was in my about my 10th year of living with MS, for those first 10 years I was fighting to get an answer that made sense and it wasn’t until I was getting divorced and I had to hold down a job that I took the decision to act, what else could I do.

Our circumstances really do determine how we deal with being ill, I know that might shock some, but I know not just from my life but from several other, just how true that is. Ask anyone who is struggling to bring in enough money to live on and you will get the same story, how we feel is irrelevant, we can’t afford to sit back and not work. That was my story right up until my health was too bad to cover, not even the best actress in the world can cover for ever. I was terrified by the thought of not having an income so I pushed and pushed myself to be everything to everyone and to do everything that needed to be done. I know without a doubt that once I received the diagnosis 14 years ago, that for a couple of years I let the act slip, not totally but enough that those around me could see some of what was happening, it was like I suddenly had permission to be ill and I took it. The same thing happened when I became housebound, although my health actually improved for a while with the removal of the stress the outside world and being part of it caused, but once that spell had worn off and I was back at the same health level was the first time I let the act slip even further. I had learned due to circumstance to cover up my health, but oddly I actually think that my determination to be well in the eyes of the world, actually had an effect in keeping my downwards progression at bay. Each time I gave it permission in it’s early stages to be seen and to be part of my entire life, rather than just inside myself, it seemed as though it got worse far quicker.

In the first 10 years, I didn’t hide it beyond the point that I still made myself do everything that life demanded of me, being a mother of two small children isn’t something you can switch off, just because you are in pain or feeling ill. The problem was that all my flares were miss read and miss handled by everyone including me, I was in so much pain and felt so terrible due to the fatigue that no one seemed able to help me with that I tried three times to kill myself. In the next 10 I covered everything and things actually seemed to improve, yes I had the a few flares, but even when they were at their worst I still pushed on with life, not that hard when I was a DJ as I only had to work 4 hours, 4 days a week to make enough to live on. Looking back, I know honestly do believe that it is our state of mind that actually can hold our health not totally, but to a great enough extent to let us live our lives in the early stages and it is when we give in to it, that the slide takes over. If I hadn’t mentally put the brakes on and hadn’t pushed myself to be fit enough at least on the surface to keep going, that I would have hit the point where I am a lot sooner. These days I still cover much, not because I am playing a game, but because I am protecting both myself and Adam from the reality, yes you can even protect yourself.

My health has gone too far now to cover the majority or what is happening to me and spasm are now too painful to alway pretend they aren’t there, but in an odd way, not being diagnosed when I first knew there was, may well have given me a longer life in the world of the fit and healthy, than I actually managed. If thirty years ago when I had that first flare they had pinpointed that I had MS, I doubt my life would have held half of what it has, in an odd way I find myself actually pleased that no one put that tag on me back then, as I wouldn’t be me now.

Read my blog from 2 years ago today – 13/04/13 – NHS Delivery >

It felt a little like I was on the right track yesterday and then the world turned against me. The long waited for relief via the OT in the shape of a cushion and a bed lift to help me sit up before getting out of bed arrive yesterday morning. As they came through the door I spotted instantly that the cushion wasn’t what we discussed in any way, it was just another…….

2 thoughts on “Thanks for getting it wrong

  1. Dealing with chronic pain and illness is not easy. I retired early from a nursing career after being diagnosed with Myasthenia Gravis, epilepsy, and fibromyalgia. I had taken several falls injuring my arms and causing weakness in my hands. For the past 5 years I’ve been searching for answers.
    Every seizure med I was on gave me horrible side effects. Last July I started on magnesium (Mg) for seizure control. My last seizure was in 2011. I was surprised at the improvement in my body. My Mg was never low on any labs, but my potassium was. I found out that Mg will not show low on serum levels. It has to be checked on a cellular level. I worked for 40 years as a nurse and never knew that; still don’t completely understand it. I take an assortment of vitamins & minerals. The chronic fibro pain is gone. My balance and MG fatigue are a lot better. Mg is needed by every body system. Check w/Mayo Clinic, WebMD, or my blog: And talk to ur doc.


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