Taking back control

Almost 30 years into her MS journey, Lesley Smith discovered that with determination, she could improve her condition

I first got symptoms of multiple sclerosis (MS) within months of giving birth to my first son. I was 30 years old then and I’m 62 now, so this is a long story. I have secondary progressive MS.

The first symptom I noticed was my right thigh was numb, but I didn’t think anything of it at the time. I was working full-time as a customer service assistant for BT and training to be a driving instructor in my spare time. My hobbies were going to the gym and windsurfing, and it didn’t stop me doing any of that, so I ignored it.

Then, when I found out I was pregnant, I gave up the driving instructor training and windsurfing. I was still keeping fit and carried on working full-time for BT and I went on maternity leave later that year.

My first son was born in October 1989 and when my maternity leave ended soon after Christmas, I went back to work full time. That’s when I noticed I started to get tired after the 10-minute walk between my parked car and the office. I had always been fit and healthy and just didn’t feel as strong or steady as I should. I didn’t want to go to my doctor and say, “There must be something wrong with me because I don’t feel right” when I couldn’t be very specific.

 I carried on working because I could. Until, one morning at work I picked up a full mug of hot chocolate and spilled it all over the desk because I had suddenly lost the grip and strength in my hand. My manager told me to go straight to my GP, who phoned the Norfolk and Norwich hospital while I sat with him and got me an appointment with a neurologist on the following Monday. How the NHS has changed in 30 years.

Shocking news

I went to the appointment alone not expecting bad news. The Neurologist did some basic tests. Until then I hadn’t noticed the numerous very mild symptoms he discovered. Then he told me I had “symptoms consistent with those of MS”. I knew nothing about MS at all and asked what he or I could do about it. To which he replied, “There is no cure, so go away and good luck!” That was over 30 years ago and I have not forgotten what he said or how it made me feel.

I felt like I had been hit with a sledgehammer. I was 30 years old with a new baby and I had just been told I had an incurable illness I knew nothing about.

I wasn’t offered any medical assistance so took the alternative route. A lot of the therapies I read about in the library books were special diets and lifestyle changes so that’s where I started.

The first thing I tried was an exclusion diet. Unfortunately, that had no obvious beneficial effect and didn’t show up any food allergies. Next, I tried a blood group diet which was difficult because my ex-husband and I are different blood groups. It had no obvious positive effect. I also took vitamins, particularly B complex, A, zinc, manganese and evening primrose oil. I still take some vitamins and minerals although at that time I didn’t attribute any of the improvements in health to supplements. I have always been very healthy and never get bugs or viruses that are going around and that’s still the case today. If it wasn’t for MS and my catheter (which I’ve had for roughly ten years) causing occasional water infections, I would never need a doctor.

Big changes

I had my second son in 1993 and left my first husband before he was a year old because I thought we would be better off away from what had turned into a toxic, stressful relationship. We got divorced and two years later I met my current husband and moved house to be near him. I got medical retirement from BT and that was the start of a completely different lifestyle for me and my sons living in a village on the edge of Thetford Forest.

I now have carers who get me up and showered/dressed every day and PAs with me during the day five days a week. My husband takes over in the evening, cooking, feeding me and putting me to bed.

I had no relapses for approximately 20 years, I was just gradually getting more disabled. When I was at my worst, I was unable to move anything below my neck except one finger. I was operating my wheelchair with chin controls and using puff controls attached to my bed and wheelchair to operate various other things around the house like doors, pagers and the TV.

Determined to get better

The noticeable improvements started late in 2021. One night I decided I didn’t want to wake my husband up to operate the television remote control. I had got puff controls on my bed to operate the TV, but I really wanted to do something simple for myself. So, I persisted every night to use my thumb to press the remote-control buttons until I could do just that.

Since then, I have taught myself to write, feed myself and much more including the little things that were so important to me, like holding hands and being able to hug my family and stroke the dog. The interesting thing is that I am naturally right-handed, but I now do everything with my left hand, including writing. Strangely my writing looks identical to what it used to do when I wrote with my right hand. I now write in an A4 size diary every day.

 Since I started regaining some abilities about four years ago, I have often thought my brain had rewired itself. I thought nobody believed me or thought this was possible until a few weeks ago when I watched several of Gretchen Hawley’s videos on YouTube. One thing she said in a video called ‘4 things to avoid if you have MS’ made perfect sense to me – don’t exercise until you are fatigued, stop before you get tired and try again later so your brain doesn’t get to associate exercise with fatigue. That seems to be what I had been doing without realising, by not exercising at all, just trying repeatedly to do a task and finding I am able to do more each day. My wheelchair engineer is proud of me, and he has taken away my chin controls and I now use my hand to control it.

The only prescribed drugs I take for MS symptoms are Pregabalin twice a day and Solifenacin to stop my bladder ‘twitching’. I also take a women’s multivitamin and I am one of the lucky few to be prescribed Sativex on the NHS thanks to my current neurologist.

Unfortunately, still very little is known about MS or how to treat it. So, I would say to anyone diagnosed with MS, stay positive and avoid any kind of stress if you can. Try anything and everything including Gretchen Hawley’s physiotherapy techniques and enjoy yourself while you can. I tried a lot of alternative diets and supplements that didn’t work for me, but everyone is different so it’s worth trying anything including Sativex if you can get it because it stops my spasms allowing me to do much more during the day and sleep well at night. That’s also the advice I was given by one of my Neurologists before he retired when I asked him if cannabis would help. I also know I would not be where I am today if I didn’t have the love and support I get from my family.