My long-term condition is multiple sclerosis
My long-term condition is multiple sclerosis, it is not a happy or relaxing disease. It can usually be controlled with medicines and other treatments. Its a complicated disease, hidden disabilities are a fact of life. A big problem is that no one has ever told me what the future holds. It now prevents me doing things that once I took completely for granted. It has a profound effect on my physical and mental life. I think only those who have this disease fully understand the ups and downs of living with it. Rest assured there are plenty of them and so different for everyone.
When I was diagnosed in 1996
I had suffered bladder problems since 1972. The consultant told my GP that I was already showing signs of foot drop. The consultant only said to me that MS is an incurable disease. 28 years later I have chronic drop foot and drop leg and cannot lift my left leg off the ground, not alluded o by the consultant
Every year
I tell the consultant my most serious problem in my annual 15 minute consultation. He will always tell my GP about the visit. If I am lucky the GP puts me on the waiting list to see a consultant who can investigate the serious problem and hopefully provide a solution. All very long winded.
Some problems never discussed
MS affects my left-hand side much more seriously than the right. This would not be a problem except that I am left handed. Quite suddenly I realised that I could hardly hold a pen to write. Not a catastrophe because we all tend to use a computer to write but there have been some embarrassing moments.
My long-term conditions
A shop assistant wanted me to write my name and telephone number to contact me when some shoes arrived. I had to ask them to do it for me. I now find it difficult to twirl spaghetti round a fork or to cut up food with my left hand. The time will come when I will have to ask MrsB to cut up food for me. This is OK at home but imagine being in a restaurant, definitely a hidden disability.
My core strength is steadily diminishing so sitting on a flat seat of a chair without arm rests is tricky. Add to that the difficulty of leaning forward and maintaining a steady position without holding onto anything.
The company that have just built the accessible bathroom supplied me just such a seat to sit on when having a shower. I told them to change it for one with a cushioned seat and arm rests, so much safer. I have no desire to be picked up from a hard tiled floor with a dislocated shoulder.
Sometimes they grow imperceptibly
These problems just slowly crept up on me and are not as serious as incontinence, mobility issues or restless legs. I’m sure someone could have forewarned me of the consequences of them before they became serious and possibly embar problems. These hidden disabilities might not life threatening but they are bloody inconvenient and make my life embarrassing and difficult. Its all part and parcel of living with a long term condition, not funny.
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