Two years ago today, I was diagnosed with relapsing remitting MS. At the time, this blog was my saviour. Being able to talk about how I was feeling and what I was going through was extremely cathartic and I couldn’t have needed it more. But I feel like I’ve lost my way with it recently. I’m finding myself writing only when I’ve been feeling frustrated and needed an outlet and that’s not what I want this to be about.
So I’ve been working on what I want this blog to be and how I can take it forward over the next few months and beyond. I’ve got some ideas, but I also want to know from you what you want as a reader.
I’m still yet to write about my experiences at the MS Sessions in Bucharest which was back in October which is ages ago now! But there’s so many important things I want to say about it and there’s so much that I’ve done following it regarding how I want to use my diagnosis in a positive way. Something that I was considering probably a year ago was interviewing other people with MS for their story and writing it here, but I’ve learned some skills at work with editing audio and I’m toying with the idea of podcasts amongst other things. I do however also want to bear in mind not starting something that I can’t keep up with or ending up burning myself out. I can’t do everything!!!
Anyway – focusing on two years with MS, I still stand by what I said this time last year. It’s one of the best things that’s ever happened to me. Sure, I don’t say that on my bad days, but from a big picture perspective, I wouldn’t be who I now am without it. And for the last year, I’ve been the happiest and most content I’ve ever been.
It feels important to talk about how I feel about Lemtrada, 18 months on from my first round. I feel like the first round wiped me out and I’ve not been the same since. Let me explain. Even after I was diagnosed with MS, I felt no different to how I did before. I was exactly the same. I didn’t ache unless I’d been in the gym, I was still tired all the time (but just in the sense that I needed early nights and then I’d be ok). I had the occasional brain foggy day which I could usually put down to a bad night’s sleep. It wasn’t like I was diagnosed and then all of a sudden I had all this stuff wrong with me all the time.
Before I go on, it’s important for me to point out that I don’t regret my choice to have Lemtrada. It was the best option based on the options presented to me and the key thing is, as far as I am aware, I haven’t had a relapse.
But what I do feel is this. I’ve never truly recovered from it. Now I get it. Maybe I’m six months off of recovering from it and feeling better. It wasn’t like I was diagnosed with MS and all of a sudden I felt rubbish all the time. That would be purely psychological because until that point I was more or less ok. No. I feel like since the first round of Lemtrada I’m constantly battling symptoms. I’ll either be tired, aching/in pain or my cognition will be a mess. Thankfully, never all three at once. Some people call them pseudo relapses, other people call them a flare up. Whatever they are, I feel like I’m in a constant state of it.
Fortunately, nothing is debilitating and that’s why I see myself as lucky. The aching is never horrendous pain that I can’t live with. It affects me psychologically more than anything on some days when it’s a little worse than usual and I feel like it’s never going to let up and that this is forever.
But when I can shift my perspective it changes. I’ve not (knowingly) had a relapse in all the time I’ve been officially diagnosed with MS. And actually never feeling more than 75% is a small price to pay if it’s (so far), halted my progression. So to anyone who is considering Lemtrada, there’s no way I would tell you not to have it.
God. That felt depressing and like a whinge. Exactly what I’m trying to avoid! I feel like a quick bit of honesty about Lemtrada was needed though. I’ve not talked about it for ages and I’m finding myself increasingly thinking about the fact that I’ve not had a relapse but I currently feel ten times worse than I did two years ago. And there might be someone out there wondering the exact same thing on a personal level!
Moving on, let’s talk positive. In Bucharest, I met the lovely Jessie Ace. She runs the Disabled to Enabled Warrior podcast and she asked me to be on it. We recorded the interview back in December and my episode comes out next week! I will of course be sharing the life out of it and it would mean a lot for you to have a listen yourself. I talk diagnosis journey, how I’m involved with my local MS Centre and the benefits of Reiki with MS.
I’ve also been keeping busy with Wigan MS Therapy Centre and have started to open the centre up a couple of times a month so that young people and full time workers can access the facilities and support group that comes with going to those type of centres. It’s very early days at the moment and I have a really clear vision for it. Obviously, after just one meeting it doesn’t yet meet that vision at all. Rome wasn’t built in a day and it will grow into exactly what it needs to be in time though.
Following my starting this, I’m really happy to have been put forward to join the committee for the centre and am now the Young MS coordinator. More on that as the role evolves 🙂
Blood tests are still being done monthly and all the results are coming back ok. No sign of thyroid issues or any of the other associated risks with Lemtrada. I think I’m on number 19 of what will be roughly 60 tests now. They’re flying by! I’m coming up to my annual check up with my consultant too. That’s on Friday 6th March and I’ll be getting results of the MRI I had back in September at that point and will hopefully get good news about how Lemtrada is working for me.
And that’s all for now. I needed to do a catch-up to get me back to blogging consistently and I’m hoping to talk more about things I’ve mentioned above, along with some other stuff throughout this year.
But for now, I’m gonna go and celebrate my two year anniversary with a brew and a nap!
2 thoughts on “Two years and counting”
Joanna – your journey is so similar to mine! I was also diagnosed with RRMS 2 years ago today (25th Jan 2018) and have had Lemtrada (in Aug 2018 and 2019). It’s taken me a long time to come to terms with the realisation that I’ll probably always have symptoms (fatigue, cognition, mobility). If this is the worst I’ll get, though, then the Lemtrada was worth it.
Good luck to you, MS buddy – wishing you well.
LikeLiked by 1 person
How bizarre! The only difference is my Lemtrada was in June. Hope you’re doing well. I know exactly what you mean that as long as I don’t deteriorate (or at least very slowly) then it was all worth it 😊 xxx