Is anyone there?

A day that has already almost vanished in front of me, one phone call and suddenly I am miles off my normal routine, yes, Jake called. I have to say that in the last couple of weeks our calls have been far more upbeat and not just long lists of people from the music industry that I no longer remember, it is amazing the difference being employed makes to someone. He has like millions of others been looking for a job for a while and finally after volunteering for a few months at CAD, someone took him seriously and Sainsburys have employed him to sell credit cards in-store. It is only 2 days a week but since he got that job he has suddenly been accepted on to two other big companies short list for other jobs, just a million hurdles to clear first, but hopefully by the end of this week he will have the one he really wants. He hasn’t stopped trying to find work yet though, even as we were on the phone he was checking out jobs on line, this is a modern thing that I am just as guilty of as most others, doing something on-line while talking at the same time. I know it is incredibly rude but there is this need to just keep fiddling, I remember in my first sales job I was told that when actually talking to a customer that I should put my cigarette down, as the sound of it came over on the call and sounded insolent. Yes we were allowed to smoke, all of us did and I think I am right in saying that there were 10 of us in one small room all smoking 40 plus a day, with as many burning out in the ashtray, oh how the world has changed.

Tiredness is sitting heavily today on almost every part of me, I slept well last night but without restoring any of my energy. It is one of those things I wouldn’t have believed possible not that many years ago, illness teaches us much but usually things where ignorance would have been welcome. I have always been a person who absorbers information and then keeps it stored for later use, looking back over my vast knowledge of medicine gained from watching ‘Casualty’ and of course real medical documentaries and even the standard ‘soap-land’ series, I have noticed a huge change in all of them, illnesses like MS, lupus, Parkinsons and so on have all increased in their appearance. I know that some may be saying in your heads right now that well when you have a condition you do notice it on TV far more, I will say yes, but only to a point. What made the change is something very simple and probably the only real use I have noticed for celebrities, when one of them develops such a condition, they now talk about it and TV picks up the baton and runs with it. The power of celebrity is huge and I wish none of them had to be ill any more than I wish it on non-celebrity, but I honestly admire the work that soaps now do when it comes to educating the public, even thought clearly it has to be limited as if everyone was ill, well the public would soon switch off, but I have noticed one ball that they have failed to pick up and run with, someone have a condition like MS but who manage to live a normal life. You know just like the millions out there who are still working, bringing up families and so on. Yes they would have to have the odd crisis, just as we do, to remind the viewer that they are in fact ill, but coping well. So often when TV does bring in a character who is ill, these poor people are always at the worst and most dramatic stages, good TV, but not how it really is at all. Invisible illnesses are just that but if given a visible character to be connected to, then maybe they might not be quite so invisible.

It’s now three weeks since I sent my form back regarding the new system for sickness benefits, it took me about 3 hrs to fill in and Adam posted it off, but then nothing. I have no idea how long they normally take to get back to you, or if the fact I can’t get to them means they will come to me, or if they are just checking with all my doctors to confirm my conditions. In the past I have always been confident that the system will go smoothly and all I needed to do was fill in the form and then the money would start, but with all the horror stories out there, well you just don’t know what to expect. I know all I can do is wait and I am really not panicking about it, as I have seen some on TV doing, but I am also not as relaxed as I have been in the past. From what I have seen on TV it doesn’t appear that anyone is seen just once, regardless what illness they have, even ones like mine that has no cure, no improvement and no possibility of ever being able to work again, every year you are seen again. I really can’t see the purpose of that if you are on a one way journey, what does the government expect, that just because they want us back working, we will suddenly be totally cured and totally able to work? Again I may be wrong about that, there may well be a section containing people who are actually correctly written off as unable to work ever.

Despite the daily desire to sleep, I have to say that I don’t feel too bad today. The worst thing is once again coming from my ribs and there art of digging into everything whilst crushing my lungs into not being able to take a breath of any depth, that is the contribution from my MS. I have noticed in the last couple of weeks that my breathing is often very shallow, not all day long but there are clear spells where I know I am only breathing with my upper half of my lungs. My now daily MS hugs aren’t helping me much either, when you can’t really get a breath and then suddenly your intercostal muscles cramp up, well I guess most will be able to paint that picture themselves. I am still wondering about buying a monitor just to keep an eye on my oxygen levels, for no other reason than that it might put my mind at rest, mind you it could do the opposite with just as much ease. I did a spot of checking once again on the MS sites as to how common it is for MS to cause the breathing problems I have, and it’s actually not that rare depending on which web site your read. As most say it makes sense, if MS destroys muscles and screws up nerves, why would it just ignore such a huge place filled with so many of both. Having said that it is only around 32% of us who do have problems, the real danger is during the later stages of the whole game, which again makes sense. So I’m not alone, “HELLO OUT THERE”.