It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and sent me out a prescription for some anti sick pills. I have had spells of nausea for years so I think nothing of them now, but I admitted to the Doctor they were there, you know that way when someone, even a Doctor who is used to hiding things, seems concerned about something you don’t, well I got that feeling from him. I’m not saying there is something bad wrong, so don’t think that, what it is thought is an example of something I think is nothing but others don’t. I thought it was so much of a nothing that I only mentioned it when asked and he says it as something requiring treating. I hardly brought anything up just now, mainly liquid so I am hoping that my meds are still safe, I suppose I will find out soon.
The longer you live with an condition the more you become used to having it, I know that many many people couldn’t understand how despite being clearly ill, in a wheelchair and at one point taking my food through a feeding tube for 3yrs, I still went to work daily. Near the end of that period I was only going in for 2 days a week, working from home the rest of the time. I wasn’t being brave or putting on a British stiff-upper-lip I was just getting on with things. Even when my health forced me into being housebound, for the next three and a half years I still worked full time, sat here are my PC producing everything I was asked to and more, I only stopped when like many others in the world just now I was made redundant. Chronic illness slowly creeps forward, taking tiny steps all the time, with the occasional huge jump that everyone sees, but you yourself and those that see you daily don’t see it. I can’t tell you with any confidence, any particular date when something started, anymore then you could tell me when the first grey hair appears or a wrinkle made it’s first mark, a time line is impossible. I was ill for many years before I was diagnosed and over those years I got used to having spells of illness and I had learned to keep going, probably helped by the fact that I was self employed and if I didn’t work I wouldn’t have been able to pay the bills or eat. I can only give a rough date to when my MS turned progressive and ironically that is because it was during one of my happiest spells in my life. I was newly married to Adam, my work was great and we had bought our first house, it wasn’t long after moving here that I demanded I wanted to know what was wrong, June 2001 I got the answer.
Strangely I still don’t see myself in any ways as disabled, I like most have a picture in my head of someone who had MS and what they can do and can’t do, and that isn’t me, from your eyes it may be, but not from mine. Different symptoms come and go, I vary as to the one that is most annoying and I think that is the crux when it come to being asked how I feel when talking to a Dr. With so many things wrong, but those things being there in my mind become listed as normal as they are there all the time, picking out what are the important one is hard. I could sit here and start at my feet and work up to the top of my head but I will still guarantee that I will miss loads of things, simply because they are now normal. I have to think a long way back in my life to gauge how you are feeling and I can’t even be sure if I would get it right then as I don’t have those dates. A rough one has been guessed at that I was 21 when it all started, 30yrs, find normal in there if you can, I can’t, it’s too long. Just to make it a touch harder remember my memory is also a little screwed up and finding within it, the information required on demand doesn’t always work.
Each day I just get on with things, not as I always have, but as always as much as I can do. Normal is today, just as it is everyday, don’t ask me how I am as you will get the answer I’m OK because that is what I am, I have no gauge left to me other than to match it against yesterday. Ask me how I am compared to 13 yrs ago as it was the year Adam and I married and my comparison would be lengthy.