Five years after my MS diagnosis

July is my anniversary month. It’s been five years since my diagnosis. Five years in. Let that sink in. Crazy really. Some days it feels like I’m only at the start of this mad playground ride. So? How am I?

How am I doing?

On the surface, I’m ok. I’m working full time, I go to the gym, I cook dinner, I go to the pub; all the usual, standard stuff. Look underneath the surface, I’m perhaps not doing all those things “very well”.

At work I often lose focus, I used to be such a detailed-minded person. Now my mind wanders more than I’d like to admit. My gym routine only includes exercises that don’t include lifting my left leg. Bloody footdrop has gotten to me over the past few months. Walking is becoming harder by the day it seems.

Cooking dinner often requires little breaks where I sit down for a moment; mainly because by that time of the day, I’m ready for bed. Well, and my social life is interesting, but I can blame the pandemic and irreconcilable diary conflicts with my friends who are also mums. We are just all a bit busy, or bloody knackered, or both.

Basically, everything has just gone a bit shit over the past few months. The biggest problem really is my left foot. My physio thinks that I have adjusted my walking and now use my whole left side to take a step. In turn, this gives me a lot of pain at night and makes me super tired with my walks becoming shorter and shorter. And it is definitely not related to my fitness because I actually am getting fitter again when swimming, for example, something we obviously couldn’t do during the lockdown.

Things are looking up though

My last MRI was actually clear of new activity. So whatever this is, is old inflammation or stress-related but has nothing to do with any new lesions. That’s really good. My Neuro decided, however, even though there was no evidence at the time, my little eye episode in December 2019 was probably a mild relapse.

So, I am waiting to hear about changing my therapy. Recently, I had a bunch of appointments to discuss it and a load of tests to make sure I qualify. I’m waiting for the green light literally any moment now. This therapy is more efficacious than my current one, by quite a bit. I probably shouldn’t, but I’m pinning a lot of hope onto it.

Of course, the doctor would say that therapies are preventative only but when I started my current therapy back in 2017, I really improved with a lot of my symptoms easing so much. At the time, it felt as though my body finally got to have a good rest from all the inflammation and just recovered. I’m very much hoping for the same this time.

I have also had an assessment for an electronic device to help lift my foot. Sounds all very bionic, but it’s surprisingly simple and I’ve gotten to try it out recently. My hope is that it will help me move my foot in the right way again so I can stop using my hip to lift, stop the pain in the night and maybe walk for more than a mile in one day soon! I mean, what if I can go for a jog??!! Fingers crossed on that one, the waiting list is long, I’m told.

Learnings

There are a few things I’ve come to learn over the past five years of living with multiple sclerosis.

Firstly, I’m so lucky to have such a supportive family and set of friends. So, so lucky. Everyone has been just the best. I don’t have to explain or justify, people in my life have accepted that I’m not always 100%. I know from the MS community that this is not always the case. Many others face relatives that blame or accuse of overdramatising or laziness. I’m so grateful that I don’t have to face that! Thank you famalam!! You know who you are.

This sounds like an obvious one, but I need to advocate for myself more at medical appointments. I need to ask more questions, get health professionals to write things down or print stuff off for me. When I’m just a little more demanding, I walk away so much more content and they actually don’t mind. I have started to log appointment discussions on my phone straight after, for example sitting in the car before I leave. It really helps me to remember everything that we talked about and what will happen next and when.

At the time around my diagnosis, I remember wondering “will I be in a wheelchair in five years’ time?”. Well, I’m not and I’m not about to need one either. That being said, I have grown in myself during this time, learning about many others with MS or similar chronic conditions and I have come to realise that a wheelchair, or any mobility aid, is just that: an aid to stay mobile. For some, and maybe me one day, it is a way to stay independent and still experience life, just in a modified way. I’m not completely petrified of it anymore.

More next time

I will write more about changing to a new therapy when I finally do and also on that electrical device. And I hope to write this time next year that I have improved and got my walking back, even if I’m perhaps not running 😊