Well it has certainly been a while since I posted anything on here, hasn’t it?!

Picking up where we left off

The last couple of years have been pretty up and down in terms of my MS. When I was posting around the time of my diagnosis, I was struggling to get my head around it all but on the whole I tried to be pragmatic and turn my situation into a positive by focusing on healthy living.

As well as trying to eat healthily, I started on disease modifying treatment and my MS was pretty much kept at bay. I managed to live normally, going on adventurous holidays and I even did a skydive for charity. It was therefore fairly easy to act as though MS wasn’t an issue for me and to push it to one side. As time went on and my symptoms became minimal, I tried not to speak too much or too often about the condition as I didn’t want to appear attention seeking or as though I was milking it. I was also trying to focus more on living day-to-day rather than thinking about what might happen down the line to stop it from becoming too overwhelming. MS became something that I didn’t really think about much.

It was through this mindset though that I actually ended up in a weird sort of denial. I eventually stopped making an effort to eat healthily, I started to switch off my notifications from Facebook support groups and I stopped researching and reading up on the topic as I didn’t want to think about MS anymore. It became easy to disregard my MS and ignore the seriousness of it.

Changes to my condition

I was brought back down to earth though when a brain scan in March 2021 showed a new lesion. It was a total shock as I didn’t have any new clinical symptoms. But I switched onto new stronger treatment in September and hoped that it was going to just be a small blip.

Despite my high hopes, I recently got the results of another brain scan from November 2021 which has shown another new lesion, so further disease progression. It’s not what I was expecting at all and it’s felt like my world has come crashing down all over again. Like going back to square one when I was diagnosed. The news has really hit me hard and I’ve been at a complete loss. It’s hard to put into words what I’m feeling. Helpless. Confused. Aggrieved. I don’t really know. It’s made all the more confusing given that I feel okay physically so I feel like I don’t have the right to have these negative thoughts when others have it so much worse than me. I suppose it’s the unknown that scares me most. And knowing that disease progression equates to a higher chance of disability later in life just fills me with a feeling of hopelessness.

So, what next?

I’ve felt like I’m losing the fight and desperately need to find a way to move forward from here.

So that’s why I’ve returned to Naturally Lydia – because I acknowledge how unhealthy my recent habits have been and how facing the problem head on is the only way to get through it. I find it exceptionally difficult to express myself but I’m hoping that a return to blogging will help me to navigate my feelings and find a way through this low point instead of ignoring it all. So this blog will be my way of holding myself accountable. After all, I did say originally that I’d be using this space to take you with me on my MS journey. So that is the plan!

I’ll also be continuing on my current treatment, called Cladribrine. It’s an oral treatment for very active relapsing remitting MS, taken over the course of two years. My latest brain scan was quite soon after I started on this treatment so we’re going to use the results as a baseline and see if Cladribrine brings any improvement. I am also aiming to refocus myself on healthy living, following the Overcoming Multiple Sclerosis programme which involves a plant-based diet with minimal saturated fat, as well as exercise and meditation. My hope is that I’ll regain not just a healthier lifestyle but a healthier relationship with my MS. So here’s hoping.