Learning to embrace life with MS

Hello @Statto, could you introduce yourself in a few lines?

Hi, I'm Jamie and I'm 40 years old and live in Southern England with my wife and two teenage children. Before becoming ill, I was an Associate IT Director running a fairly large technical group in the Healthcare Industry. I'm a bit of a science and comic book nerd, but I tend to balance that off with my love, as a fan, for hockey and football. I also enjoy the gym and recently discovered I enjoy scuba diving.

How did you find out you had MS and how did you get your diagnosis? (was the diagnosis quick or was it difficult to get?)

It's not an easy answer as I was misdiagnosed for 7.5 years! However it started off with a numbness radiating down my leg. I assumed I'd ruptured a disc in my back as I always had some sort of back injury; however, the doctors quickly ruled that out. They referred me to a neurologist and the long joruney of searching for the correct diagnosis began. After about a year, I was diagnosed with NeuroSarcoidosis, which is very rare, but the doctors felt it was the only possibility as they had ruled out everything else (including MS). However, after 7 years of experiencing a poor response to the treatment, the doctors decided to do a review of my diagnosis. This time, from the CT Scan, my brain scan lit up like a Christmas tree, presenting as classic MS. A lumbar puncture then came back as positive for MS, despite being negative 7.5 yrs earlier. That was just this past October.

What was your reaction when you found out you had MS?

Mixed. I knew before the new diagnosis was confirmed that it was back on the table as a possibility. I saw that possibility as being good as it was neither better nor worse from my point of view from the symptoms I was experiencing. However, with MS there was much more support and better treatment options available. So I was in fact hoping for a diagnosis of MS which felt a bit weird. With the diagnosis of MS I was able to better understand the prognosis, which made me have to face up to a few things which was harder than I thought. My mental health was also definitely affected.

You formally have had MS since 2014, what have been the major impacts of the disease on your everyday life? (the relationship with your family and friends, complications…)

When the symptoms started 8/9 years ago it was really a worry but I was fairly stoic about it all and was pretty stubborn about it all. I resisted help and waited far too long to get a cane, which inadvertently probably caused my family to worry even more. It finished my football career, which was probably a good thing as I was always injuring myself (and I wasn't that good either!).  However after few years it started impacting my work. My company was fantastic and very supportive but just over 5 years ago I had to give it up. I fought it hard as I enjoyed working but I was no longer doing myself or the company justice.

I tried to keep busy and stay positive, but the loss of structure in my life was hard. I started to become isolated socially and more introverted. Later, I learned that it was probably the start of me getting depressed. It was also creating a lot of concern and worry with my family and friends. I know it was hard on my wife and children. I didn't realize it, but I started leaning on my amazing wife hard, too hard. My wife ended up holding everything together and it was not fair on her. It's probably what I find the hardest to process. Even though I know it was not really my fault, I'm not sure I'll ever truly forgive myself as she was in so many ways having to do it all on her own.

In the short term getting the correct diagnosis was tough, especially since I was formally diagnosed with depression at the same time. Facing up to the realities of everything was incredibly hard. I don't mind admitting that I nearly fell apart completely. However, my wife and kids served as my anchor and I began to fight back and started putting myself back together. It's taken some time but with their help and support I'm coming through the other side. My wife has stuck by my side and she is truly wonderful. She is still the love of my life. My kids have also helped me just by being them.  They will always do anything to help me, but mostly they just fill me with a sense of pride.

As for today, how do you manage your life with MS? What practical advice could you give to other patients on how to cope with MS?

Physically I take everything one day at a time. I look after my health much better than I used to. I have my weight down from 336 to 224 pounds, which isn't as bad as it sounds... I'm 6' 4". Still a bit to go though; I would like to lose a bit more weight. I started to attend a regular physical therapy class run by the MS Society, which has been a huge help both physically and socially.

However, I've learned that the most important thing to look after is your mind. First, be honest with those around you and let them help and support you. Trying to protect them by playing down how you feel, fools no one and puts up barriers. Those closest to you know when you are struggling, no matter how hard you try to hide it. Make sure you keep structure in your life. I used to work 60hr weeks and going from that to nothing leaves a huge void.  Since rebuilding myself,  I've started attending the physical therapy class, I am involved with an informal MS Coffee Morning group and I also have gotten involved in a local charity as a community volunteer and a trustee. My life's not the same, it’s just different. Accepting that fact was key as it allowed me to let go of what I had lost.

I feel strong mentally once again and feel like myself for the first time in quite a few years. My wife, who has been a rock throughout, must have missed me. I'm now in a place where I can be a rock for her once again. I'm back and she deserves that.

What positive message would you like to share with our readers?

Focus not on what you've lost, but what you have and what you might gain. It used to be hard to leave the house, but now I find it hard to stay in. I still have so much to be thankful for, and still have so much to look forward to. Last year, I became an occasional wheelchair user on the back of two very hard relapses. However, This year I've used it once! I'm getting stronger and my mobility is improving every day. I also discovered scuba diving about a week ago and now plan on getting PADI qualified. The truth is, I probably wouldn't have done it had I not become sick with MS, as I never had the character to overcome my anxiety around water. Now I've learned to embrace life and make the most of everything.

The MS won't hold me back anymore, I won't let it.