Having lived with MS for 28 years so far, former antiques trader Sheila Steinberg, 65 from Herne Bay, says her stubbornness helps her get the most out of life.
“I was in my mid-30s when I noticed something might be wrong. Walking didn’t seem the same any more as my left leg started dragging slightly with each step.
Then there was extreme tiredness lasting for weeks at a time. I ran an antiques business with my then-husband, Michael, and felt exhausted while preparing for nationwide buying trips and exhibiting at antique fairs both here and in the USA.
When my hands went completely numb and vision started blurring aged 37 I sought help. My opthalmologist recommended I see a neurologist, and in 1987 aged 38 came the diagnosis: ongoing secondary progressive MS.
Learning to live with MS
When I was first diagnosed the fatigue was truly dreadful. It’s hard to describe it properly to anyone who hasn’t experienced the tiredness. It just envelopes you and drains every bit of energy from the body. Worse still, there never seems to be a pattern to when it happens.
I kept working in our antique business for about five years, but eventually the travel involved got too much for me and I had to give up.
Although it was very busy and extremely hard work, my life in antiques had been wonderful. My ex-husband and I had made friends around the world and had so many great experiences.
But when you change from being an active, busy person to living with a debilitating condition like MS, it can be hard for a partner to cope with. Sadly we eventually divorced, although we’re still on good terms.
Finding out about Kent MS Therapy Centre
A friend who had suffered from polio had a colleague with MS who was having treatment at the centre, and suggested it’d be a good place for me to try.
But I hadn’t properly accepted my condition and didn’t feel I needed extra help yet.
As time goes on you learn to live with it and think about how you can get through it. And a few years in, my mindset changed.
It wasn’t so much a case of needing extra support, but I was keen to see what else was out there for someone with a condition like MS.
As soon as I walked through the centre doors in 1991, I realised what a special place it was.
Having somewhere to go where everyone was in the same boat has proved invaluable. If I go in on a day when I’m not feeling good, I’m bound to see someone who’s having a tougher time. That really puts things into perspective.
There are also the treatments. I have a distorted retina, and regular hyperbaric oxygen therapy has helped with my vision as well as eased fatigue.
Things were on an even keel until a few years ago in 2008 when I fell very ill with a virus not connected with MS.
It meant a four month stay in hospital – a fortnight of that in intensive care – and being left utterly debilitated afterwards. The centre’s wonderful physiotherapist Sue Turnbull (now retired), along with HBO, played a key role in helping me slowly recover my mobility afterwards.
Day to day
These days, my fatigue isn’t as bad as it was at the start. Either that, or I’ve grown used to it over the years although am sure HBO has helped enormously. When I do feel very tired, I tell myself I won’t feel like this all the time.
At home, I can do most things whizzing around in a wheelchair but do walk a little with a frame, and use a wheelchair to go out. I also have carers each morning to help me get ready for the day. Everyday tasks like getting dressed and making my bed take me so long, and having help makes life less frustrating.
Although I live alone, my mother lives in the upstairs flat from me which is good for mutual support when we need it.
Advice for the newly diagnosed
For anyone struggling to come to terms with their diagnosis, there is light at the end of the tunnel.
Being part of Kent MS Therapy Centre hasn’t just been a vital source of support but it’s also opened me up to experiences I wouldn’t have had otherwise.
As well as doing a tandem parachute jump out of a plane, I took part in the Snowdon Challenge a few years back. This involved being carried in a wheelchair converted in a sedan chair round Snowdonia National Park by soldiers from Shorncliffe Barracks, Folkstone.
Both were to raise money to build our new centre, but I gained a lot more in terms of confidence and fulfilment from being involved.
Focus on what’s possible
I always try to focus on what I can do – and not what I can’t. Things aren’t easy – often preparing to do something or go somewhere is the hardest part rather than the actual event. We wouldn’t be human if we didn’t have slumps, but with the right approach you can still do so much.
If someone tells me I can’t do something, I’m even more determined to prove them wrong. I don’t like giving in, and many of the people I’ve met who also live with MS are the same.”