Being told you have multiple sclerosis can put an understandable strain on a relationship. Finding out that your partner also has the condition is not something many people have to confront. In this article, Julie describes the shock of both herself and her husband, Martin, receiving the diagnosis. Despite this double blow, they are both determined to continue to get the most out of life.
In spring 1989, shortly after starting a role as a practice nurse in a GP surgery, I developed optic neuritis in my left eye. This lasted for about six weeks and was accompanied by pins and needles in my left arm and severe lethargy. Thankfully I was working part time, near my home, meaning I could continue working. My husband was working full time at that point, managing a motorcycle training school, and we also had two young daughters aged seven and four. My second episode occurred a few years later. I had severe pins and needles and weakness in my left leg and arm. Following this episode, I was diagnosed with relapsing remitting MS. It was a huge shock. Immediately after my diagnosis, MS was all I could think about. I was convinced I'd end up bedridden by the age of 40.
I went on to do a nurse practitioner degree and continued working in general practice for a further 27 years. When I met my husband, he worked for the London Fire service. He later retired following a fall through a ceiling which injured his back. He went on to manage a motorcycle training school and eventually ran a successful business selling car engine products to the motor trade. It was during this last career that he started to have falls. Initially he put these down to his new varifocal glasses. One of the falls damaged his knee, tearing the cartilage. Following that he continued to have weakness in the leg and knee pain requiring him to use a walking stick.
My husband’s situation came to a head when we were on holiday in Rhodes. He was unable to lift his right leg to climb a step. At that moment I knew that he had a serious issue, and was terrified that he had motor neurone disease. When we got home, we went straight to the doctors. Following several referrals to a variety of consultants, he eventually had a head MRI. I will never forget the day we were given the results. The consultant gave the MRI result to ME rather than him. It clearly stated that his brain had several lesions consistent with demyelination. I put the result down and said "Oh shit!" Not once had I considered that he could have MS too.
After further investigations, he was eventually diagnosed with primary progressive MS in 2012. Looking back he had probably had MS for at least five to ten years prior. Over time he gradually deteriorated and is now in a wheelchair full time. We sold our family home and moved to Essex to be closer to our daughters. We bought and renovated a bungalow and started a new (very different) life. I retired a couple of years early due to my MS, but my life is as busy as ever. I volunteer in the local Crown Court as a Witness Service volunteer and for their outreach service, visiting and supporting witnesses at home. I also volunteer for Guide Dogs as a puppy walker. We hope to get an assistance dog one day. Plus of course I look after the grandchildren when required.
We have several wonderful friends who never get embarrassed if one of us falls over or is incontinent. In fact, I remember having lunch in London with some close friends a couple of years ago. Our friend forgot to put the brakes on Martin’s wheelchair, so when Martin transferred, the chair went one way and he the other. He wasn’t injured and all four of us fell about laughing (much to the shock of other diners). We have recently bought a Trekinetc wheelchair which enables Martin to go over rough terrain. He is slowly getting used to it and now can get out and about in the countryside. Chaos generally reigns wherever we go. Nothing is simple, as I am sure all wheelchair users know. But the world is becoming more accessible, and once this dreadful virus has been controlled we are looking forward to exploring lots of places that were previously impossible in a wheelchair. It isn't fair for anyone to have MS. I often think that if we both had to be given this stupid condition, the least God could’ve done is to give me primary progressive MS and my husband relapsing remitting MS. That way he could pick me up when I fall, and continue to do all the driving! But life is what it is. Our daughters help when Martin falls and needs extra help to get up. All I can say is, please focus on what you CAN do and not what you can’t.
