MS relapse is making me angry

I had hoped to start this website with some positive thoughts and more about my journey so far since becoming chronically ill, but being ill got in the way of that as all my plans have been scuppered with crippling fatigue, weird sensations, a relapse and lots of work and other illnesses in between.

If I’ve learned one things since having my MS diagnosis is that my plans and the way I’d like to operate are never taken into account by my illness, it quite frankly does what it bloody well likes, when it likes - regardless of what I’d actually like to do / achieve. It’s mega frustrating and sometimes I find I don’t start things as I feel like I can’t do it the way I’d hope to. But tonight after planning this website for a little while I thought maybe if I just start my blog I can fit in the other things in slower time and go back over the other stuff I’d like to share when I feel a little brighter.

Trouble is, I wanted this website to be full of positives, but know as I said in the ‘About’ section that it wouldn’t all be sunshine and rainbows, sometimes it would be big black clouds, lots of rain and the odd bit of thunder thrown in to mess up my day. These last few weeks have been exactly that way and there has been more tears than I’d care to admit.

What started out as a normal day at the office ended up in an 8 hour trip to A&E with weird symptoms where I felt I couldn’t gulp properly, my tongue was numb and I couldn’t feel my lips and some crawling sensations on my face. I was taken in with a suspected stroke or an MS relapse, tricky to decide which as MS symptoms can often mimic other illnesses so sometimes it’s process of elimination to work out what is going on. Anyways, a CT Scan, bloods and an ECG later plus multiple doctor check overs by the Stroke Team and Neurology Team it was confirmed it wasn’t a stroke which was a huge relief, but then bittersweet as then it’s likely an MS relapse!

After being sent home as my Team were unavailable, because I could walk, talk and swallow, even though it didn’t feel right I was to await a follow on urgent appointment at the Relapse Clinic and an urgent MRI scan. Anyways days later, still no urgent appointment - lots of ringing around, not much help provided (not ideal when you feel rubbish and are really worried) you finally find someone who can help and you get booked into the clinic for the following week.

I don’t know about you, but I hate having to wait for appointments to come through, it heightens my nervousness and worry and always feels like you need to wait forever. Waiting is a nightmare. The appointment arrived almost a week later and a nice little thirty minute delay once you walk through the door, only to be told you are seeing a consultant with a familiar name - usually not an issue until you hear the name is the person who made you cry last time as they didn’t listen to you. You check with the nurse and thankfully they just have the same name, new consultant who I haven’t seen before. Panic over…well until you enter the room and worry about what you will be asked, will you remember everything and will they listen to your views on next steps.

The lady before me, came out saying the new consultant got their seal of approval so a little bit of hope given there, let’s hope he’s as nice to me. My partner always comes along to the appointments with me and he’s pretty laid back and doesn’t seem to understand why I get so worked up. I know this is something I need to work on. I’ve planned to discuss this at my next counselling session as well as my MS as a whole topic as it’s been weighing heavily recently so talking it out should hopefully help a little.

We entered the room and the new consultant was friendly and asked lots of questions in regards to my medical history and what brought me into clinic today. I explained everything that had happened before and what had happened recently and he talked about Disease Modifying Treatments (DMTs) of which two are available to me and that his recommendation is that I go on one of these ASAP. I explained about my previous severe allergic reactions to medication (I’ll explain more in a future post that really puts me off trying another). We agree that I’ll go for an urgent MRI scan and see if there is any evidence of disease progression and go from there.

Both aspects of this terrify me, I hate MRI scan’s but have found a way to make them bearable - so please do ask for adjustments to make them more bearable. I’ll give my top tips in a future blog. Plus the very thought of taking another medication brings me to literal tears, I find it overwhelming and so scary due to the other reactions to previous ones and there is no way to know what the right answer is.

I think this is what I struggle with most, there is no right answer and ultimately it’s my decision. Choosing not to go on them or going on them both has their own risks and I struggle to decide what is best because the worst part is that although the decision is mine alone, it affects all those around me in my family. It feels such a heavy burden of responsibility and I write this with tears filling my eyes. I feel angry that I am sick and mad I can’t do a single thing about it. When I was much younger before diagnosis, I didn’t have this negativity towards medication, you were poorly, you went to the doctors and they gave you some medication, you took it and it made you better. How I envy now that those days were so carefree.

Ever since returning from the Relapse Clinic this topic of medication has been the first thing on my mind in the morning and the last thing at night before I go to sleep. It’s been waking me up at night and I’ve been suffering with a really bad cough too which hasn’t helped. I don’t know what I will decide but I know it’s weighing heavy right now. I still don’t have the MRI scan date and after I’ve been for the scan there will be a wait for the results and then another consultant appointment to navigate and then decision time. Right now, I am just equal parts - angry and sad about the whole thing. This overwhelming and enduring sadness takes its toll on me personally but also I know it’s difficult for my family to navigate who only want what is best for me.

I did do something positive though today, I booked a wellness walk for next week to help give me something to look forward to and hopefully provide some relief from all this chaos. I’ve not done this before but felt it might be a good use of my time, I just hope my fatigue holds off enough to let me participate. I’ll report back after the walk as to its benefits for mind, body and soul or if it was a bit of a con!

Until then, try to stay positive, but know sometimes it’s ok to feel how you feel and to say it aloud and know you aren’t alone.