I was completely exhausted with my work within the NHS – it was like being on a treadmill which seemed to go faster and faster with no satisfactory end result. So, one rather riotous evening, possibly fuelled by a glass or two of red wine my partner and I decided to opt out of the rat race and buy a public house.
I thought the NHS was hard work!!! Although I enjoyed the challenge and had great plans for the business I was inexperienced and carrying an inexperienced staff. The business was making money but after about six months my smile was not quite so ready, I did not feel quite so ambitious and worse, I seemed to be a bit unsteady, sometimes almost staggering from side to side behind the bar and my vision seemed distorted at times!
Of course, one can imagine the kind of sniggering remarks that were made.
I went to see my GP and he asked me to walk across his surgery in a straight line and touch my nose several times. I dismally failed these simple tasks.
I was referred to a neurological hospital for a lumbar puncture and as a result of this was bluntly told that I had MS and was discharged.
That was it. No follow up, no referral back to my GP. I can’t believe I was so pathetic in not demanding to know more! But I felt so low and dejected imagining wheelchairs and disability that my partner and I decided to sell the business and for me to have a complete rest.
My walking improved, but my vision was still a problem if I became stressed for any reason. However, I had to return to work for my sanity and just accept the fact that I did not manage ambulation well in confined spaces, running was a gamble as I could fall flat on my face, cycling, indeed anything depending on balance was not worth the risk
For a time I simply turned ostrich and just thought I could manage everything myself. I was wrong. Everyone needs support, even if it’s just knowing there is professional help available.
During a particularly anxious period my GP referred me to the local MS nurse who was kind, prepared to listen, but didn’t say very much. She did, however, refer me to two groups. One group for women who were finding MS debilitating, the other for people with MS who were having memory difficulties, which I certainly was.
I went to the women’s group twice- that was enough. It was so depressing with people, who were managing well, really sorry for themselves, obviously very affected by their diagnosis.
The other group was really helpful, run by a clinical psychologist, with members, both men and women, really contributing and helping one another. In fact, I always find my car now when I park at the supermarket because I always park under the ‘double D’ sign!
They also taught me to write down what I was doing that day – timings and addresses of where I have to be and to keep the information in a pocket or bag. Similarly to make a known routine for yourself to remind you of things (like I park under DD) I carry around my daily schedule and phone numbers of my husband and daughter. I also keep my car make and registration details in my bag.
I believe we all approach our diagnosis and symptoms differently and indeed peoples’ symptoms always vary.
Falling over, bouncing off walls, desperately needing the lavatory, headaches, numbness, tingling , the inability to swim (no sensory information), often dropping things and all other health issues are, of course, in my mind the product of Multiple Sclerosis, particularly the inability to drink very much alcohol! My G.P. doesn’t always necessarily agree with me and possibly could get a little irritated with my seemingly casual attitude. However, because he is so good and kind (and because symptoms are more noticeable, I really need to do this) I am keeping an appointment to see a neurologist shortly and it will be interesting to see if attitudes have changed over the last twenty years.