My name is Yvonne. I'm married and live in Shropshire. I’m retired now and was diagnosed with primary progressive multiple sclerosis (PPMS) 15 years ago. That date, 31 May 2015, is emblazoned in my memory.
I live a happy life and stay active by volunteering for the MS Trust. I was an occupational therapist and felt it was important to keep using my brain, so I also volunteer at a group helping older adults get online and do a bit of work for NICE [National Institute for Health & Care Excellence] on clinical guidelines.
My MS journey was one of a lot of frustration around the early stages.
I probably had MS for five years or more before it was diagnosed. It started with foot symptoms—loss of sensation and proprioception—but no one identified the cause. I saw a GP, physios, orthotists, and even an orthopaedic surgeon before being referred to a colorectal surgeon for bowel symptoms. Eventually, after reporting loss of sensation in my legs, my surgeon suspected a neurological issue.
I was referred to a neurologist for MRI scans and eventually I had a lumbar puncture to make the formal diagnosis of MS. When that came, it was a bit of a body blow.
I'd worked with people with MS, all of whom had serious consequences resulting from their disease, so that's what MS meant to me then. I didn't have a broader understanding of the range of diagnoses, I'd never even heard of primary progressive MS. It all came as a shock, although I probably did know in the back of my mind it had to be something like that.
The bigger shock came when I was told there was no treatment for primary progressive MS at that time. Now of course, there’s good treatments for it, like Ocreluzimab, but it wasn't available then. When I went with my husband to hear how we were going to manage this, I expected somebody to say, “we'll start your treatment next week and get this under control”. The answer I got was, “there's nothing”. That was harder to hear than the diagnosis itself.
Finding support
Early on, I was referred to an MS nurse who took me under her wing. I was lucky I was seen in a big tertiary hospital where I worked, so I could navigate myself around the services. I got to see a functional bowel nurse quite quickly. From then to now I've have good support from the MS nurse services.
Over the years, I’ve had good continuity of care. Even though I moved and changed services, I was picked up pretty quickly, and I still see the same person now. It helps to know I've got somebody to turn to for new challenges. Someone who understands the disease and how it can affect different people.
I was told several times that PPMS was probably the worst type of MS to have, but I don't think that's true. I think, you have your own MS and regardless of the label that's applied, you and it will go on a unique journey together.
When I was diagnosed I was shell-shocked and I thought my life was coming to an end. Everything that my husband and I had planned and hoped for, the bottom seemed to fall out of our life plans. I'm fairly certain, looking back, I was clinically depressed. I disengaged with everything, despite getting good support at work. There was a lot of crying, ‘why me’, ‘I don't deserve this’, ‘what have I done to make this happen?’. I couldn’t help but think, going through those initial weeks and months, that if I'd done something differently, life would have been different.
Initially, I kept things to myself and my husband. Loss of your health and your future is shocking and going through those stages of grief is natural. I certainly did presume the worst outcomes. I was deteriorating quite rapidly at that time and I foresaw myself in a wheelchair within a year and giving up work. Everything was very negative in my head and I was introspectively dwelling on how awful it all was.
Taking control
And then I got angry and started sharing the news rather than keeping it to myself. I made plans to see people, including family members. I don't think I'd even told my mum then because I knew she would be upset (my father had already died), but mum was in fact very stoic.
I made appointments with people to ensure that I got their attention when I was speaking to them and sharing the news. I didn't want it to just be a throwaway part of the conversation.
Then I decided to do a skydive for the MS Trust and put my devastation to positive purpose. I e-mailed everybody individually that I worked with and shared the news of ‘this has happened to me, but I'm not going to let it beat me’. I wanted to feel in control of it, rather than it being in control of me.
It was what it was and I needed to do something to try and change that because there was no treatment. I went into survival mode and tried to find out everything I could about MS. That's when I first turned to the MS Trust for information about all my symptoms I was experiencing. It was so useful.
My neurologist didn't spin me any yarns about how to manage my MS. I spoke to other neurologists who said they would have tried steroids, but that didn’t feel like the right route for me. As my own neurologist explained, steroids may have only dampened some of the symptoms, and some of those treatments were causing more problems than they solved.
As that wasn't for me, I just tried to get on the front foot and do what I could to keep in control of things. It was then that I started to really focus on keeping fit. I was already a healthy eater but I worked long hours, and didn't prioritised myself. I shifted the dial on that and started to keep an exercise regimen to keep myself fit and strong. Fortunately for me my motor nerves have not been significantly damaged, so even now I can still walk. Part of that I put down to having kept good muscle fitness and strength for symptom control to some extent.
Yvonne’s tips for living with progressive MS
1. Be as fit and healthy as you can. MS is damaging parts of your body, but there are parts that it's not reaching or hasn't been able to reach yet. Keeping as many parts of your body functioning as well as you can is really important.
The body has a tremendous capacity to self-heal and find ways of getting messages from the brain through our bodies. The more active we can be, even within the limits of damage from MS, can give you a sense of control over what your body can continue to do.
2. Live your life Don't let the MS become your sole focus. When I was diagnosed, MS was front and foremost in my mind. Whenever I was speaking to anybody or doing anything, for a while MS was all I could see and talk about. I would make sure I managed to get it into conversations:
‘I'm struggling with this thing that you can't really see, but it's here and it's with me all the time’.
As time went on, gradually it became less prominent. It's still always with me, but it doesn’t take up so much mental space and I can choose to let it in or not, depending on the circumstances.
I hang on to the knowledge that grief or loss becomes more manageable and less of a focus as time goes on. That makes it easier to live your life.
3. Don't leave things for tomorrow. It's a good mantra for anybody. Nobody knows what's around the next corner, but to have an MS diagnosis brings that into central focus. I got on and did the traveling and other things I wanted to do, knowing that I may not have the physical capacity in the future. As it is, I've been very fortunate that my deterioration has slowed down over the intervening years, so I haven't lost the function that I dreaded I would. Although there are things that I now can't do, I'm just so glad that I did them when I was able.
4. Investigate new issues when they arise. The last thing I want to say is don't assume everything that's going on with your body is to do with MS. MS brings all sorts of new and challenging symptoms so we tend to put everything down to MS, but I've found a lot of my bowel symptoms are due to colitis. If I'd assumed them to be my MS and not investigated, I wouldn't be able to manage the way I do.
Seek help from your GP, neurologist or MS nurse - make sure you've got that team of people around you. If you haven't got those people as your touchstones, it's so important to find out how to get them.
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