Shortly after the arrival of our son, my Partner, Eliza, was diagnosed with multiple sclerosis. For the previous few months I had noticed that she was having difficulty walking straight, would lose her balance at random in the hallway. Vertigo was our laymen diagnosis. When it didn’t go away, and instead started to get worse, I insisted that we go to the G.P. Eliza has a history of head tramua from a childhood of accidents which she blamed irregularities on, but this was a little different, more acute and more pronounced.
In the doctors office, he asked Eliza if there was any history of multiple sclerosis in her family. She said no and the conversation continued on, it was a fleeting thing. But it stuck in my head like a splinter. I knew a little something of multiple sclerosis having known a couple of people with it and suddenly a few things clicked. The vertigo, the slight confusion, all made some sense with multiple sclerosis.
I didn’t think it worth repeating; but left it there in the back of my head to see what the specialist thought. Next thing I know, Eliza has a diagnosis of multiple sclerosis.
The first thing to come to terms with isn’t the diagnosis itself, it’s the lack of a definitive answer, of any answer really. In the beginning, you learn that there isn’t a single test that comes back as confirmed multiple sclerosis. There’s only a few different tests that they do, which if enough of them say could be MS then they say you almost definitely maybe likely have MS .
The first thing to come to terms with isn’t the diagnosis itself, it’s the lack of a definitive answer
There’s no explanation offerred as to why either. It just happens. If they knew what caused it, they’d tell everyone to stop doing it.
Throughout this initial period the most difficult part was accepting that which you can’t change. As a partner, we all want to fix things, make them better for our loved one. But there’s nothing I can do about multiple sclerosis, so I very quickly had to learn to accept it. My Partner has multiple sclerosis was something I needed to remind myself of.
After a while the treatment started, and that’s when it really starts to sink in that it’s MS and there’s nothing you can do about it.
With the solidifying of the medical diagnosis, and my acceptance of the diagnosis, it allowed me to change my problem solving mindset into: what can I do for my partner. The answer I kept reading online was really unhelpful stuff like “be there” etc, but that’s probably not going to be enough. Considering that MS is going to affect my partner physically, I needed to think of things in terms of workload and fatigue and try to reduce it. This also means that there’s some things that need to take priority.
For example, I know that the physical fitness aspects of Eliza’s treatment are one of the most important things for her continued well-being and function. So, I readily gather the kids and take them somewhere so that Eliza can go to the gym. I know that diet is a big contributor to overall health so when she said that she thinks she might need to cut out red meat I said “okay” and started cooking salmon. A month or so later, when she said she thinks vegan diet is probably better, I said “okay” and learnt how to cook all our favourite meals vegan-style (and some new ones).
This was something that I could do. I cook most of our dinners, because I enjoy cooking, and if vegan is what my partner needs to stay as healthy and be as unaffected by MS as possible; then I can do that. To me, these actions were important. I can’t do anything about MS, I can’t make it all go away so my partner feels better, but I can do these things.
(I’ve enjoyed the health benefits of a completely vegan lifestyle as well. This is coming from someone who used to cook a steak every second night).
For her birthday, I went online to google what kinds of things make living with MS more comfortable. Cooling towels and a weighted blanket are apparently great ideas. So they became a gift for her, an MS-pack. Again, something that I can do. I’m not sure how useful they really were, but finding some actions that I could do meant a lot to me, allowed me to feel like I was contributing, and had the double-whammy affect of showing my partner that I was doing things as well.
Aside from these direct actions that I could take, the next big thing that I could do was keep a general awareness. My partner helped with this because she’s such an open and great communicator. MS affects people differently, but one of the big symptoms is fatigue. Being aware of this as a major symptom helps me see when my partner is tired, acknowledge in my mind that her tiredness is not the same as mine (her’s is bone-tired fatigue) and take over at these times. I can’t completely remove her workload, but I can remove it when she needs me to.
As a partner, I think this general awareness is also important in monitoring the disease itself. Eliza probably can’t notice as well as I can if her conversation lapses, or her speech slurs, or if she starts stumbling more than normal, or a hundred other little things that can be signs of increased demyelination and potential disease activity. Knowing what these symptoms are, that general awareness, and keeping an eye on things, is again, something that I can do. I can always feel like I am contributing and doing something so long as I can keep a mental tab of her symptoms and how they are changing over time.
Knowing what these symptons are, that general awareness, and keeping an eye on things, is again, something that I can do.
Throughout this whole process, Eliza’s attitude, which is affected by my own attitude, is probably the number one thing that has kept us going. If either of us falls into despair, it’s important that the other one doesn’t; if that happens there’ll be no one left to pull us back out. We both share an outlook on life that can be summed up as “you play the hand you were dealt”; so a lot of what’s happened we were able to take in our stride.
Of course, this sort of attitude is what resulted in Eliza making this website. Dealing the hand we were dealt means doing the best we can with what we have. If Eliza and this website can help others, then we would have definitely done the best with what we were given.
Such a powerful, touching post. Thank you for sharing your journeys.