So now I had finished the steroids but didn't have a clue as to what would come next. The effects of the steroids went away immediately and when I look back, it seems like looking back on your holiday, feeling fit and non-drowsy with the brain at 100% [OK so my brain had never been 100% but was at the same percentage as pre MS].
Some more visitors to help me, therapists, a physiotherapist and an occupational therapist called one afternoon with even more information. Apparently the pelvic muscles are the main ones affected and they would get in touch with a speech therapist who would help me with my swallowing and coughing as well as my slurred tired speech. The physiotherapist would order me a frame to be able to lift myself up to sitting position in a morning and then to stand, and she would be back in a week with a shorter walking stick as she believed mine was too high for me, and also show me the exercises I would need to do, Exercises? Exercises?! I hadn't got any energy to do anything especially not exercises, thoughts of keep-fit classes with super-fit forceful teachers come to mind.
The frame arrived a couple of days later and the fun I had that night trying to read around it! Eventually I chose the frame holding the book open position which seems to work to date. The day or so after the frame the physiotherapist came with my new sized stick and information about the dreaded exercises. Yet another leaflet came with her, I was amassing quite a pile in my folder, pity the eyes aren't working properly, at one point I discovered the joy of the magnifying glass, I now have them scattered around the house, the kitchen for reading the oven temperature on frozen food cartons, obviously the living room for just about anything, and in the bedroom to help [well try to] with the beauty process.
The exercises were quite easy, apart from the balance ones that is, now it was a case of remembering to do them on a daily basis, my memory has never been that good at the best of times but the MS seems to have taken it away altogether.
Then the appointments started arriving, and are still continuing, so more next time
Saturday, 5 December 2009
Friday, 27 November 2009
THE STEROIDS FIVE DAY COURSE
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.
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.
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.
Thursday, 19 November 2009
THE LAST OF WHAT'S PAST
This is the day of the consultation and I sit quietly, thinking, on the journey and in the waiting area. I left the Nintendo at home but made sure I had enough music on my phone to distract me without being too repetitive. Was this a good idea? Not if you are as inquisitive and chatty as me! I would rather chat to the other patients in the waiting area. It is true what they say – there is always someone worse off than you, people who cant use their legs at all and all sort of viruses I discovered later were around.
The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.
I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.
Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.
A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.
I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.
I didn't know until then that there are different types – these are the two main categories
Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.
Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.
Primary Progressive MS
Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.
A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.
The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.
School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,
The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.
I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.
Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.
A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.
I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.
I didn't know until then that there are different types – these are the two main categories
Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.
Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.
Primary Progressive MS
Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.
A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.
The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.
School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,
Subscribe to:
Posts (Atom)