Forms to fill.

I don’t know exactly where it is coming from as in MS or other, but I feel really terrible today. As yesterday went on I felt more and more ill and more and more in need of my bed, I went there at 8:30 last night but I think I should have gone at 7 when I wanted to. Anyway I slept to the alarm and I still feel like I haven’t slept at all. Mind you it has been a busy morning for me as the shopping arrived and is now all over the hall floor until Adam comes home and clears it all away. That activity would add up to the way my legs feel but not the rest of me, I just feel like giving up and sleeping for the rest of the day, not hiding just escaping.

Before I can escape though I have to fill in this form from the pain clinic, probably good in that case that I am not having a brilliant day as when things are really good I have the human problem of down grading the worst to just past OK. The sheet start with drawings which it asks you to shade in where you have pain, mine is almost all shaded, they wanted me to put crosses where the pain was at it’s worst but other than a couple of areas that I could do that as the pain from MS is all over rather than point driven, but I have done what I can and I will be there to explain my bad descriptions.

Next they wanted a date for it all starting, for me that is easy 1981, as it didn’t start due to an accident or event I had to pass on that part of the question. The next I found a little harder as they had a list of 45 words that people use to describe pain, I was actually surprised by the list that they had put together as I can’t imagine anyone using most of them, for example ‘Stretching’, ‘Sad’ and ‘lonely’, the last two are emotions not measurements of pain, well not to me anyway. I have circles 14 of theirs and added two more of my own as it says you can. The problem with this section though is that depended on what day it is I would use different ones, it is not like it is the same all of the time.

The next three are “When do you get the pain?”, “Is there anything that makes it worse?” and “is there anything that makes it better?”. I am at this point getting the impression that this for is for someone with pain in just one or two area’s and not everywhere and anywhere. I have answered as well as I can and resisted the temptation to say that Gin made things better, but the first two where easy, all the time, and then activity of any sort.

The next three are what I expected and what I also hate, scales, marking things from 0 to 10, for the worst pain in the last week I scored and 8, the best for the last week a 4, and the average for the week 7. I don’t like these scales really as they again rely on memory and personal perception. I have said the worst for this week was an 8, that is my level based on what I have to compare it to, you might have said it was a 10 or declared me a wimp and put it only at 4. I just turned to the next page and there are more scales to deal with, pain right now? I would say 5.

Question 8 is in loads of sections, they want me to scale how much pain interferes with different activities. First they want to know about general activity, I have got a little cleverer and marked 8 to 9. The problem with this section is that it isn’t just pain that affects all the things they are asking. I am having to try and separate pain from fatigue and everything else. Nest they want to know how it effects mood, I gave that a 3. My walking ability, 6 to 7. Relationships with other people I had to put in at 9 to 10 as I see only one of my old friends, MS stole the rest. The affect on my sleep is a little awkward as once I am medicated highly enough I sleep, so I put it at 6 to 7. I gave the same score to my enjoyment of life, I didn’t really know which life they meant but I guess they want me to score it against an average life. They made that one easy with the final one in this section as to how much it interferes with hobbies and so on that one got a full 10.

The final page is all about my medications that I am on and here is a classic one to ask for someone with a bad memory the names of all the different pain meds I have ever been on. I really don’t think this form has been written for some one with the conditions I have. If you have been ill as long as I have it is really hard to make any of those answers fit. There is no base line for me to fix anything to as everything has been part of my life and I have adapted that life to work with the limitations. I guess that I will have the chance to go over it all with them when I get there. The last 5 years of isolation have had this wonderful protection built into it, I didn’t have to keep going over and over again what is wrong, why I do or don’t do things and how it all effects me. I know I opened the door and asked of help, but at times like this I wish I had kept it firmly shut.

How are you?

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.