How I’ve learned to live with progressive MS
Jenny’s been living with secondary progressive MS for more than a decade. She shares how she’s adapted and what gives her purpose.
Well, it’s now been 1,560 weeks since I was diagnosed with MS in 1992. Not that I’m counting… But I’m now firmly in the secondary progressive camp. I got the secondary diagnosis in 2011.
By going through all the adaptations I’ve had to make, I hope I might shed a little light on what was a dark place for me for a while. I want to show how my MS is now something I can cope with.
I’ve worked to educate myself
I’ve tried to find out as much as I can, from anybody, but with my BS detector in good working order. I go for information that is tried and tested before trying and applying it. Friends and acquaintances often have a great deal to say about the where and why. Sorry – but this can be very unhelpful, I just breathe through it and let them know gently. They’re only trying to help.
While I’m on the subject of friends – there have been some revelations, it’s a testing time, some have stayed and some wriggled away. I try not to take it personally, but it can be a surprise.
My mental health is my priority
I’m lucky I live somewhere where I have plenty of nearby entertainment and support. My kids are grown up now, but when they were younger having support nearby really helped during tough times.
This leads me on to mental health.
My belief is that if you look after your mental health, you’ll be able to cope with most things. Do whatever helps – whether that be taking medication, to removing stressful situations and people from your life.
All of the above works well for me plus having a positive attitude, however false it can feel deep down at times.
MS eventually affected my work
I decided to not share my diagnosis with my employer until 2011 when I began to show signs of walking difficulty and balance. They made some reasonable adjustments for me, but after a year I took early disability retirement from practising as a midwife.
I hoped that my 35 years of midwifery experience would put me in a good position to be a mentor, but it wasn’t possible. The NHS is strapped for money, and they had no room in the budget to accommodate this. So early retirement it was. It was very hard – I loved my job and I’d still be doing it now if I could.
Painting has been a life saver
After retirement I took up painting. I do about 25 hours a week and I’ve now completed my 700th painting. I heard that it takes 10,000 hours of practice before you become skillful, so I’m on my way, with a long way to go.
I’ve always been interested in art, but my enthusiasm was fired when my eldest son, Dugald, started producing really good works.
It took me absolutely ages at first, and you can tell my early work. But I feel like I’ve found something that keeps me going, which is really helpful when you’re facing something like MS.
I’ve managed financially by buying used canvasses and frames from charity shops. Paints come in occasionally too, as do brushes. I have an arrangement with my local Norfolk and Norwich Send Association, who save art stuff for me and I in turn give them the fruits of my labours to sell. We all win, I get to paint and paint and they get to sell my paintings.
I’ve sold a few works, but that’s not my end goal – mental wellness is. I also give a lot away as presents.
I paint from photographs, which is really helpful – I can get the placement right, get the colour right. It works for me. I only use my right hand, my left hand is very weak, but luckily I’m right-handed. This hand is very precious to me, especially my thumb!
I try to be IT savvy
I have an iPhone, and it’s still a challenge to keep up with the updates and advances, but I keep on trying. It’s become my memory, and a very important part of staying in touch. I feel more in control if I remain up to date.
YouTube has been a great art teacher, people are very keen to share their knowledge. It’s also helped to get a tablet pencil for working on a screen, as my fat wobbly fingers are more than useless. Anything I can do to keep frustration at bay helps my mental health.
Changes as my MS has advanced
My speech and swallowing are now affected. Slurring of words, lost words and brain fog are just a few limitations, but this is where good management and IT skills can really help. It’s become easier for me to write than speak.
The slurring can bring some wrong judgments too. Together with the loss of balance and wobbling, it can all feel horribly reminiscent of my misspent youth. This time it couldn’t be more hurtful.
Good mobility aids minimise this – it became essential after a while. It’s not an easy journey to go from two legs to four wheels, but it’s been necessary. I tried electric tricycles, Segways, and scooters before transitioning to an electric wheelchair. At first it was very upsetting but curiously, it became better once I finally got there. It all got very real, and there was no time for denial anymore.
Getting a lap dog has helped me cope with using a wheelchair
My dogs are a huge part of my life. I feed my little dog treats so she jumps and stays on my lap.
Miniature poodles and their crosses are ideal as they are fiercely intelligent and adorable at the same time. Not only are my dogs good for me, but other people notice the dog, talk to him and end up talking to me.
Wheelchair users can become invisible, unnoticed and ignored. We just need to nudge the general population into conversation and show them we are alive and (sort of) kicking.
When I was getting used to using wheelchairs, sunglasses were essential too, because they shield any mortification or tears in your eyes. Now it’s not a problem – but at first I would spontaneously cry while I was out using my chair, and mascara would streak down my face.
Experimenting with symptom relief
Over the last decade or so great strides have been made in disease modifying therapies (DMTs) for people with relapsing MS, but not so much for people with secondary progressive MS. For many of us, there is only symptom relief. If you have an EDSS score of 6.5 and above there’s nothing going. We simply don’t fit the criteria.
The best symptom relief I have found is fampridine, but I have to pay for that because at the moment it's only available on the NHS in Scotland, Northern Ireland and Wales.* I also pay attention to my diet and I use an app to help track what I eat, which has helped me.
* There’ll be a decision on NHS fampridine access for England in 2025. Read the latest on fampridine.
Don’t kill your carers
This is an obvious statement, but worth remembering. About five years ago it became obvious my husband didn’t want to be my carer anymore, he wanted to be my partner. So now I use direct payments to employ my own carers.
Good carers are worth their weight in gold. The caring profession suffers from being poorly paid and career progression is limited. I’ve had a variety of carers, all part-time. When I find good ones I do all I can to keep them with me, however long or short their time with me is! I try to be flexible, and to remember their birthdays.
It can be hard having paid carers at first, but I’ve had to adapt to it. Using direct payments has helped me have more control.
I have a wealth of real-life hacks now
Those of us who’ve had MS for a while often have systems and strategies worked out. There’s a wealth of aids, mechanical and otherwise available. Although not all of these are available through the NHS and some can be costly.
I’ve had to change as my condition has changed. But I haven’t had to give up on most things, I have just done it differently and learnt. Ultimately life is worth living, and for me, adapting to the life I have has made all the difference.