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Multiple Sclerosis Awareness Week

My Mum’s Story

As MS is the immune system attacking it’s self, the nerves are surrounded by what is called the myelin sheath, a bit like the insulation cover round an electrical wire, the immune system makes holes in this sheath and when it heals it leaves a scar, or lesion, which then presses on the nerve stopping the signals travelling along it correctly. This causes the muscles to be unable to work correctly, or lack of feeling or perhaps ‘pins and needles’ also muscle wasting.

One symptom that almost everyone gets whichever variety they have is fatigue in varying degrees, personally mine is extreme. I feel extreme fatigue doing very little, which is most frustrating, the mind wants to do it but the body will not co-operate. Another thing many experience is very cold hands and feet, I find wearing flight socks keep my feet warm.

Trying to fight the fatigue only makes things worse, I get overtired and whilst I go to sleep at bedtime I wake at 4 am or 5 am and cannot get back to sleep. I make time every afternoon to have a sleep; even then I often have another sleep after tea. When overtired just sitting in a chair I get extremely stiff and then find it difficult to move, the danger then is of falling as once on the floor I cannot get up again, even with my husbands help we struggle! Even when I sleep 7, 8 or even 9 hours I never wake feeling rested. My hips and back can be painful when getting into the standing position, particularly in a morning by bedtime I am considerably better in fact can do it quite easily and pain free. I developed an under active Thyroid not long after being diagnosed with MS, unfortunately I was unable to tolerate the normal starting dose of Thyroxin as it made my muscle spasms worse, it has taken many years to achieve the correct dose with no side effects. More recently I developed vitamin B12 deficiency, but now have that under control.

Physiotherapy often helps, unfortunately I had mine at the local general hospital not somewhere specialising in neurology and as I knew nothing about MS I did not realize what type of physiotherapy would be best for me. It tended to be concentrated on keeping me walking which only increased the muscle spasms in my legs, in the end I had to stop going. I would have done better doing core strengthening type exercise as that made it easier to sit up for longer without feeling so tired. 

I very rarely go downstairs as I need to rest in bed so much, I have an electric wheelchair upstairs and can still move about sufficiently to get into the wheelchair and use the bathroom for myself. I use the laptop in bed; have a television in my bedroom along with a printer and all the bits and pieces for making the cards shown on the hobbies and interests page of the website.

The next thing I should say is that when someone is diagnosed with MS it affects the whole family, not just the person with MS. I cannot do all the household things, which makes things difficult, everything falls to my husband to do………, cooking, cleaning, ironing, washing up even down to making me a cup of tea! It is easy to see why so many couples in this situation split up.

It is 20 years this August 2012 that I was diagnosed, for 15 of those I have been housebound. I had a small number of friends when diagnosed and over the years they drift away, one used to visit regularly but as her children have grown up that has gradually stopped. One reason I like the internet, at least I do not feel so isolated. It has made me mentally stronger; I also appreciate the world around me more, like watching the birds in the garden although I always used to put food out for them.

Our daughter was 15 when I was diagnosed; she left school at 16 to do a secretarial course at a college of Further Education. As her career progressed she took qualifications at evening classes which entitled her to a Graduation, I was unable to attend or take part in any celebrations.

We have missed out on being able to do the simple ‘mother and daughter’ things, when she started buying her house it was my husband that helped her decorate it. In fact I have never seen it but have had to accept just seeing photographs.

Later as she changed jobs she did a Master’s Degree again part time whist working and again I was unable to be part of it. 

Her friends helped her celebrate because I was unable to, although my husband attended we could not do it as a family, which was very disappointing for both myself and her.

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