When I got back the results of urine test I was clear and therefore could start taking the steroids. Would they work I wondered and what effect would they have? Numerous people had told me I would feel great because of the steroids, but was their 'feeling great' the same as my 'feeling great'?
Day one and I don't feel any different. Was I expecting too much?
I had been told that I must take the steroids before 9.30a.m. or they would stop me sleeping that night but the only effect I felt at first was not being able to sleep.
I decided the steroids are given to people such as me that don't have a serious enough reaction to the 'You've got MS' statement. They bombard you with information that goes right over your head then give you a week to digest it. The next stage is steroids in high doses that not only taste vile but are difficult to swallow when the throat isn't working properly. Because of the high dosage it also causes emotional instability, then the MS nurses visit and throw even more information at you such as the complete destruction of the immune system by the therapy drugs and steroids therefore need to have innoculations against viruses such as influenza and swine flu also the implications of having a healthy diet - no out of date food or insanitary conditions - being told that something that gives a healthy person stomach ache could be really serious for me.
The seriousness of it all and the lifestyle changes needed really begin to sink in, and people who have grasped the seriousness way ahead of me seem to pity me and I am slowly getting there. Its not just a balance, cognitive and speech problems it impinges on everything. I am not allowed to go the hospital [too many infectious people around] unless it is necessary i.e. being used as a pin cushion or having the operation for the catheter fitted because my bladder is getting mixed messages from my brain and so to empty my bladder down to a 'comfortable' level it's totally dependent on a type of gravity powered overflow method. Due to the brain message defect my rectal muscles don't work properly so I can't risk diahorrea or constipation, when I need to empty my bowels I just have to sit there and allow it do it in its time. And I thought my major problem was my lack of co-ordination and balance whenever I change direction, or not being able to do anything else whilst walking e.g. desperate for that coffee or that cold drink but I must remember I have to sit first before I can get a decent hand mouth co-ordination and not end up wearing the drink on the outside rather than being a nice sensation on the inside!
After a few days I did feel better physically though but have been warned not to try and catch up or do too much because when I have finished the course the 'fitness' will disappear in a flash and if I've done too much whilst feeling 'fit' I will suffer at this point, we shall see. However it is nice being able to watch programmes after 9pm.
Friday, 27 November 2009
Sunday, 22 November 2009
QUESTIONS? WHAT QUESTIONS?
I now had the unenviable task of telling ny mother that I had MS. Oh joy – because I had MS but not knowing what type I couldn't tell her much, I had some useful leaflets but she can't see well so they were useless, so I did try and explain, but she only heard me talk of the spondylosis and keeps saying to my children that I have not had my test results back yet so don't know what is wrong me!
Because she only hears and absorbs what she want to we decided [the we being myself and my son and daughter] to keep mentioning MS whenever the opportunity arose. I told her all about the MS nurse's forthcoming visit and what I knew, but she I still insisted to my son & daughter that I knew nothing yet.
Meanwhile I was being a good girl and taking antibiotics for the urine infection. I had been told that I would have to finish the antibiotic course and have my urine re-tested to ensure their was no infection left before I could take the steroids. This took two weeks, 1 week taking the tablets and another to get the results. All the time the steroids were sat staring at me, I'm sure they had their arms crossed and were tapping their feet.
One particular morning the MS nurses called to see me, two of them. The noisy dog was shut outside where she did shut up. I had received more information from them during the interval between the consultation and the visit, but still had no questions.
What I really want to know is what will happen in the future? No one person can tell me that, it is a personal illness that depends upon one's individual situation. My only experience of MS has included wheelchairs and total incapacity.
By this time I had discovered the effect of crowds, Two days after my hospital visit I came down with a head cold and realised that the muscles that are used to cough aren't working properly plus the head pain when I did 'cough' or sneeze was intense, I think that pain is due to spondylosis not MS.
My best friend became the internet, forever looking up this symptom and that one, The main two sites I turn to are MSTrust and MSSociety. 2 charities that are very hard-working, knowledgeable and effective. I think I have downloaded every leaflet they produce. That's not to say I've read them all, but I've got them ready for when I want to.
Because she only hears and absorbs what she want to we decided [the we being myself and my son and daughter] to keep mentioning MS whenever the opportunity arose. I told her all about the MS nurse's forthcoming visit and what I knew, but she I still insisted to my son & daughter that I knew nothing yet.
Meanwhile I was being a good girl and taking antibiotics for the urine infection. I had been told that I would have to finish the antibiotic course and have my urine re-tested to ensure their was no infection left before I could take the steroids. This took two weeks, 1 week taking the tablets and another to get the results. All the time the steroids were sat staring at me, I'm sure they had their arms crossed and were tapping their feet.
One particular morning the MS nurses called to see me, two of them. The noisy dog was shut outside where she did shut up. I had received more information from them during the interval between the consultation and the visit, but still had no questions.
What I really want to know is what will happen in the future? No one person can tell me that, it is a personal illness that depends upon one's individual situation. My only experience of MS has included wheelchairs and total incapacity.
By this time I had discovered the effect of crowds, Two days after my hospital visit I came down with a head cold and realised that the muscles that are used to cough aren't working properly plus the head pain when I did 'cough' or sneeze was intense, I think that pain is due to spondylosis not MS.
My best friend became the internet, forever looking up this symptom and that one, The main two sites I turn to are MSTrust and MSSociety. 2 charities that are very hard-working, knowledgeable and effective. I think I have downloaded every leaflet they produce. That's not to say I've read them all, but I've got them ready for when I want to.
Subscribe to:
Posts (Atom)