The things in every day life that you miss when the world changes, is amazing, up went the temperature and away went my porridge! This morning is refreshingly cool and I am making the most of it as I know we are back to the oven tomorrow, yes I had porridge, smaller than I would usually have as I still don’t really have an apatite but even in that position I still enjoyed every mouthful that I ate and guilty about throwing away what I couldn’t. The house was refreshingly cooler all day yesterday but I stuck to cool or cold foods, not wanting to take the smallest risk, even then it all went wrong!
I had worked through the morning typing away to the accompaniment of snoring, feeling not to bad all the way through, yes tired and in pain but the wanting to pass out feeling was controlled as I managed to limit my needs to get up from my chair. I had no such luck by lunchtime, just fetching some food and going to the loo left me feeling ill, really ill to the point I didn’t want my lunch and I had to force myself to eat it. I don’t let myself away with not wanting to eat, being too ill to eat it is a completely different thing. Having a few years ago landed up with a feeding tube for several years with all food entering by a tube down my nose, I now study with care what I eat and make sure it is enough. It is crazy that the same condition has seen my drop to just seven stone and a couple of pounds, edging on malnutrition, to being just over thirteen stone and finding no way of getting rid of it! Although the summer months are easy to stay on small rations, I’m not so good the other way round, but that I believe is due to sitting all the time, energy use is almost zero, weight then just keeps going on, especially in the winter months when comfort food becomes just that. The short journey to the kitchen and with as much of lunch as I could eaten, I switched from an OK day to one where I wanted to throw up and felt as though lying down before I just found myself there, was a good option. I headed to bed with Adam still snoring on the settee, which was still his position two and three quarter hours later.
Dinner was once again a case of each mouthful was more an effort than an enjoyment, before I ate I felt ill by the time I finished I felt terrible and switched off my PC early, for the peace of the settee. Over the next couple of hours I crashed big style, 7:15pm and there was only one place to go, bed. As Adam said good night to me, he asked if I wanted him to call a doctor, so I guess I didn’t look well either, I declined and within seconds of touching the sheets I was once again asleep. I realise that I know have a HUGE problem and it wasn’t until last night that I even thought about it, when do I call a doctor? How ill do I need to feel before I need medical assistance and what it the symptom list that requires ticking off before lifting the handset and dialing. I have so many things wrong with me and most they can do nothing about but there has to be signs, or clues that I am not coping at all. For so long I have just got on with it all, and I expect that is how I will spend the rest of my life, but there has to be points, those moments that show I need more assistance to be able to get through those spells, the points when I need my medication changed or increased, how much do I just saying I am OK, when I’m not.
No one has ever said to me that if this or if that happens, call the doctor or go to the hospital. No guidance as to what I can do to get through the difficult areas myself, I know without a seconds doubt that many would have called a doctor last night, I’m just stubborn but I also couldn’t see what a doctor would do, other than a quick short increase of painkillers, mainly to help me to sleep and escape it all. This has to be one of the questions that I have to ask when I see the doctor in October, but I doubt he will be able to help to a huge amount. All the way through with my MS I have been very much on my own, well that is how I have felt anyway. Once a year seeing my consultant, telling him what was wrong and how I was dealing with things, he then said see you next year and that was it. On my own with no idea really if I was OK, worse on their scale or just shuffled out of the way as I hadn’t suddenly jolted into highly unusual and interesting. It is all well and good being told you are OK but if you don’t know what to look for or what area’s are those that will show a problem as it starts, how do you know what to say. Like everything when it comes to health it is more a case of not preventing anything, but a case of suddenly being able to give a name to what has been there for years, because the medical light-bulb was suddenly lit.
If there is anyway of avoiding a crisis for any of my conditions I would like to know, in fact I would like to know what counts as a crisis. Just how many hours do you wait hoping things will settle, and when that 999 buttons actually need to be dialed. It is all well and good that I could call 111 but I know without a seconds doubt that because of the complexity of my health, they would be trying to send me to the hospital on every call, just in case. Then would come the joy of them trying to get me to the night time drop in center, find me a stair climber at that hour, I doubt it, carried down the stairs in a chair then and stuck there until the morning. A hugely stressful situation for me, a hugely expensive one for the health service, probably totally avoidable if I just knew what may happen and how it will make me feel. 999 then would used for the right reasons and the right reasons only.