Smouldering MS its my long-term condition
Smouldering MS, its ‘orrible
Smouldering MS, is my long-term condition, it is not a happy or relaxing disease. It can usually be endured with symptom management drugs and procedures. 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 would be when I was diagnosed. It now prevents me doing things that once I took completely for granted. It has a profound effect on my physical and mental well being. I think only those who have this disease fully understand the ups and downs of living with it. Rest assured there are plenty of problems and subtle differences for everyone.
When I was diagnosed in 1996
I have 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 to by the consultant. Is smouldering MS really such an unpredictable disease?
Every year
Now I tell my 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
Smouldering MS affects my left-hand side much more seriously than the right. Not a terribly serious problem except that I am left handed. Quite suddenly I realised that I could hardly hold a pen to write. Not a catastrophe today because we all tend to use a computer to write but there have been some embarrassing moments.
Smouldering MS
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.
They slowly get worse
These problems just slowly creep up on me and are not as serious as incontinence, mobility issues or restless legs. I’m sure someone could have easily forewarned me of these problems before they became both serious and potentially awkward. Maybe physiotherapy or exercises would have slowed their impact. These hidden disabilities are bloody inconvenient and make my life embarrassing and difficult. Its all part and parcel of living with smouldering MS and its not a laugh a minute.
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How do you write your blog? I do hope you continue, it’s so important to gain the insight and open honesty you share.
Hello Bella,
I only ever talk about my life and living with MS. I have a WordPress website for my blogs and use Mailerlite for my emails. I just write a blog when I feel the need to say something significant and keep them to about 500 words. Building up circulation is a bit of a battle. I hope that helps
Dear Patrick
Of great help. I would v. much like some advice re Giovannoni. Could I email you? Find typing here v. difficult. Best wishes, Francesca
Hello Francesca,
ProfG has retired from clinical work and just concentrating on research. Feel free to email me on patrick@aid4disabled.com and I will try to answer your questions
Thank you Patrick…I am now in a similar situation although I don’t bother with the 15 minute consultation . I speak to MS nurse if I have a problem that needs addressing .
Please keep on posting .the longer the better .
Tessa
Hello Tessa,
I valued my consultation. It was with Professor Giovannoni (ProfG) and he was a massive help and pointed me to so many who could help me. HE has now retired from clinical consultations, such a shame.
Plenty of ideas to discuss and post but so many other things to do as well. I get distracted too easily
Totally understand the frustration. When we only get 15 minutes to say our peace and try to get what we need of medical care. A problem both in UK and USA. And the limitations of the body as a disease progresses and no one seems to know how to fix it or warn us ahead of time. Instead, time passes and bodies adjust to be frailer. We all do what we can to postpone time’s progression but it is a nwver-ending story. The story of our lives. So we must enjoy the time we have and do the best we can. And help others as only we can, those of us who have unique chronic diseases with no cure. Together, we rise!
Hello Allison,
Enjoying what I am still able to do is very important to me. MS can be too consuming so I try to forget about it when the opportunity comes up but as time goes by this is harder and harder. I do try to be as positive as possible