Yesterday left me totally drained, there wasn’t an once of energy, fight or understanding left in me, my two hours sleep made no difference at all. I have found almost every time that I have been to the hospital, regardless what they say, I am always left feeling like they have managed to destroy me in seconds, even when I have come home with a positive result, as rare as they are. Yesterday it took right through to the point I said goodnight to Adam for it to all slot into place and those screaming holes that I couldn’t find the answers to, suddenly where filled and the tears that flooded down my face when he said, “I’m sorry that today was yet again the same old result”, I couldn’t actually even look him in the eye as he had hit the nail on the head. That was what was wrong with me, I had been brushed under the carpet of MS for what feels like the millionth time. When I was given the diagnosis of COPD, split into two halves equally guilty, MS and Emphysema that actually gave me some hope, some really hope and every last drop of it has now gone. I know all to well even then that the MS had the upper hand, but they could still as needed treat the Emphysema and keep it at bay easing half the problem.
Yesterday they changed that, the Emphysema has moved down the scale in my head, there hasn’t medically changed at all, but hearing it described in such a different way, destroyed it all I had put together in my head. Suddenly I have found myself with nothing to fight as my MS has already won, I hadn’t expected other than the through MS Hug, that my breathing could be effected so badly. I can accept that the pain in my diaphragm and the corseting of my ribcage are all down to my MS, but being unable to breath not only because of pain, but because my lungs just don’t know how to bring in air, still doesn’t fit. I have to keep taking all the meds and using the inhaler to help keep my lungs open and breathing, but what is going to stop my MS from locking down all the muscles it so clearly now has control of? As long as I had the belief that half the pain, half the difficulty in breathing and half the discomfort was nothing to do with my MS, I had half a chance of surviving for all of their 10 years. Now it has all changed and that as you all know, takes me a little time to get my head around it all and to settle myself to the new facts.
I have lived for years with this happening again and again, it feels as though half my life was spent fighting for a diagnosis, which I eventually got, only to now be fighting for someone anyone to not brush every symptom I have under the one flag, Multiple Sclerosis. It’s really nuts and something I suppose I haven’t really talked about, but it is something that rips you into pieces at times. MS can’t be cured, mine has relapses and steady progression in a downward line, but how am I or anyone else meant to be able to manage a condition that know one tells you what might happen next? A year ago I started to have problems with my diaphragm, I was sent to two different department and had countless tests done, they discovered things I didn’t know I had and in the end it appears that a year ago I had a MS flare that attacked my diaphragm and set off a downwards progression. If a year ago I had know it was possible for MS to cause what I was feeling, I would have asked for steroids, with any luck they might have stopped it as they have done with other flares in the past and I might not be in the position I find myself in now today. I can’t help feeling that as soon as a doctor knows you have MS that they then look for ways of passing your symptoms into the MS mix so they can then hand you back to your Neuro, who pats you on your head and sends you home again. Medical pass the parcel, that must cost a fortune to the NHS and equally must destroy patient after patient.
The longer I have lived with my personal monster, destroying quite happily by itself, the less I need others to destroy me as well. I am being drawn more and more into the belief that I should care for myself as much as the medics will allow. My GP until this last year has actually let me do so without any great problems, and we worked well between the two of us, I diagnosed, he confirmed and we together chose a medication that we could both agree on. I have no desire to head off to see any other doctors in the near future and I am going to do everything that I can, to not have to do so. Clearly if I had a heart attack well I might no be able to avoid it, but for the general care of anything that appears, I will deal with it. I feel I need to sit down with him and talk it all through, which if I was able to get to his surgery, to on the surface to talk about something else, I would then slot it in, but I feel I would be wasting his time to just pick up the phone and have a chat. I just have to remember and wait for a reason to call.
There are always other downsides to days like these, things that someone who doesn’t have MS or any of the similar conditions, I have been going through heightened stress and the one thing that does with style is to make everything else go wrong. This is day two of pain that has climbed the scale every few minutes in all four of my limbs, last night I had to take my booster pill just to go to sleep. I did mention briefly that my left thumb isn’t happy, well neither of my hands are happy, even when sat still they are in pain, burning up and the fire climbs from finger to elbow. The worst thing isn’t the pain, it is the sudden locking of digits and numbness that I recognize from several years ago when at the same time of year, a gradual down hill started and then the sudden flare, that took all use of my left arm away. All I can do is wait, but the higher stress isn’t helping anything, given just a few days I know that most things will settle down and yes I will improve as well, it’s just going to take time.