Reflecting on 25 years of life with relapsing MS

I actually felt OK with the diagnosis. Finally there was a reason for the facial pain I’d been suffering from. Then it began to sink in that this is a condition that has no cure.

I was so scared. I had two small children at the time and I was so worried they might inherit it from me. And that I may not be able to care for them, that it would affect my marriage.

Is MS hereditary? Read what we know about the causes of MS

I’ve recently found out new information about MS

I personally made the decision not to look at anything MS related. I just attended my annual appointments and tried the disease modifying therapies (DMTs) I was offered.

Then it all changed with COVID-19. I needed to know more and became anxious as to how COVID might interact with MS. So, taking my head out of the sand, I started to look at reputable websites. I found there was information that didn't scare me, and was very useful.

I felt I was being left behind regarding information on new DMTs for relapsing remitting MS. And so I recently changed my MS team.

Accessing services has been a challenge

Changing teams was a big decision, but a necessary one. However, all has not gone smoothly with my transition. The pandemic made seeing my new consultant impossible. It does feel, at times, that I have to shout to get my voice heard.

I’m lucky that I can look after myself and have my family to fall back on. But the service, in its current state, leaves a lot to be desired. I totally understand the pressure the consultants and nurses are under but what is the alternative? It’s not always easy to be heard and listened to, but we do count, and we do have a voice. But sometimes we have to shout to be heard.

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I've found that the MS Helpline has been a godsend when I feel I need extra support and reassurance.

Hopefully my decision to move teams will prove to be the right one. Watch this space.

Listening to my body and looking after my wellbeing

Our girls have grown, left home and are now married. I’m waiting to become a nanna but worry I won't be able to be as supportive as I so desperately want to be. I’m a ‘doer’ and find it hard to relax. When I overdo it, my legs go into spasm and the pain starts. I have learnt to listen to my body and not my mind. Telling myself - there is always tomorrow.

I’ve found yoga is helpful for my mental wellbeing. And I manage to play badminton with a wonderful group of ladies of a similar age. I can only play a couple of games as I get hot. This brings on the fatigue and leg spasms. But I figure that as I enjoy the competition, the game, the exercise and the company of some amazing ladies - why not.

Read more about exercise and MS

Sharing my story could help others

I worry, of course I do, but I have an amazing husband who supports me in whatever I decide to do. There are down days, but I think myself lucky that I am still, on the whole, able to complete most daily tasks.

Doing things I enjoy really keeps me sane. I’ve been thinking about joining an MS forum, but I’m worried about reading things I might find difficult. On the other hand, I could help someone else by sharing my experiences...

It is tough, but it is what it is. "I have MS - it doesn't have me" is my mantra. My approach is to try as much as I can to stay positive. To try and do something each day that makes me smile and feel good about myself - even if it’s a warm bath and a glass of wine.

I wish you all well. x