I saw my wonderful MS nurse today.
We discussed my relapse (which started 18th February – I write everything down; dodgy MS memory). It’s still rumbling along and the symptoms include but are not limited to:
- Out-of-proportion MS fatigue
- Walking round in circles
- Falling over
- Numbness, tingling, massive increase in nerve pain
- Problems with hands
- Problems with walking
- Slurred speech
And so on. It was incredibly therapeutic to go through them all, linking the dots, feeling that what I’m in the middle of experiencing is … normal.
If I was asked to describe how this particular relapse feels, I would say it feels exactly like being slapped around the face with a prawn sandwich. Repeatedly. You kind of know what to expect at first, and if it was a posh sandwich, the bread would be firm and the little embedded seeds would annoy you. Then the spinach leaves would fall out and finally the spiny bits of the prawns would really annoy you.
It’s a subtle build up. Before you know it, you’re deep into a relapse.
I was asked how I felt, emotionally.
My home is my absolute focal point right now and I spend an inordinate amount of time making it look nice. I’ve constructed an Easter tree from abandoned branches, picked up leaves from my back garden (sitting on the ground, gathering them in a pile and shuffling to the next circle) and ordered everything I need online, from food to new underwear for The Teenager.
I go to work, come home, recover, sleep, go to work, come home, recover, sleep.
It’s incredibly boring. To liven things up, I Plasti-Kote’d a plant pot with black spray and spent a good few hours arranging my Sharpies in it. I have counted how many loo rolls we have left and divided it by The Teenager. I changed the bath mat. It’s that exciting.
My MS nurse asked why I hadn’t come in to the clinic at the start of the relapse and I proudly told her I was now an experienced person with MS and sort of knew what to expect. I didn’t fancy the all-night-party element of steroids and felt I could Go It Alone.
I was wrong. I should have called. The sheer relief to talk to someone who knows. I feel significantly less alone this evening and that means the world to me. It won’t change the barrage of symptoms but I know that somewhere I am cared for.
During the worst of the relapse, The Boss hooked me up to his Netflix account and I can confirm I have now seen every single episode of each of the four series of ‘Orange Is The New Black’. That’s 52 hours of telly.
I’m being sent for another MRI (yay, claustrophobia here we come), and we’ll take it from there.
To be frank, I’m a tad concerned …
Did not know that’s what a relapse was. I’m going to have to ask more questions next time I see my MS nurse. Was told to write down new symptoms and that’s all.
I just composed a dance album during my MRI. We’ll give you plenty of warm encouragement so don’t feel concerned or alone.
It’s really important to jot down everything out of the norm, or an increase of the usual suspects.
I’ve had all of that and more, and I know it’s a bit more than a typical exacerbation.
Hope you get on ok at your next meeting.
I’m pretty far away but in the very same place as you, my friend. Work, sleep, repeat. Home a lot. I used to be super social – now a complete homebody. I’m off drugs for the next two months until I can get scheduled for Ocrevus. My neurologist and I agreed that Tysabri wasn’t the drug for me. I’m still waiting for my first real remission. Sometimes this computer feels like my only connection to the outside world. I’m glad for friends who get it – like you! Sending good vibes your way…
And good vibes to you too! Comforting to know I’m not alone through this horrendous time :=)
The whole work-home-work thing is really getting me down. This relapse is leaving no time for anything remotely fun.
And I know exactly what you mean about the computer – it’s become absolutely vital to me these last few months.
Lots of love,
It’s so scary , the unknown and whether things will settle down. I feel safe at home and nervous going out ( and that so wasn’t me until recently) might you get some more treatment to help ? Hope it calms soon . I’ve been feeling weird since end Jan and longing to feel normal again but have this feeling that this is my new “normal ” off balance and knackered and just quite weird?Defo nice to know that there are others feeling similar x
I’m exactly the same – home is ‘safe’ at the moment and I can’t wait to get back here whenever I’m out. I used to love going out but now it’s only when I absolutely have to. Hopefully I’ll have some more answers after my scan and there’s a possibility I’ll need another course of Alemtuzumab.
I hope for both of us that this is a passing MS phase and it soon ends!
Hang in there. Hope you don’t have to wait too long for scan? I’m getting results of mine next week ?
Fingers crossed for you!! Aren’t MRI’s just awful? I dread them every single time. I honestly don’t know how I get through them 🙁
Funnily enough they don’t bother me too much ?
I’m jealous!! I loathe small spaces with a passion and it kills me every time they press that button that whizzes me into a tiny tube.
I particularly hate it when my arms get squished 🙁
Sorry you are having a rough time of it. Isn’t it strange how just talking to the nurse can make such a huge difference! I always find myself crying like a baby at my appointments and I think it’s just the relief of knowing someone “gets” what I mean. Even when things are quite settled there’s always that worry of the unknown. Hope your relapse begins to ebb away soon, sounds like you are handling it as absolutely best as you can xxx
It was such a massive relief. I guess because there were so many symptoms and some of them quite random, that I almost felt I wouldn’t be believed. The perennial MS problem of wondering if we’re hypochondriacs! Piecing the whole jigsaw together was amazing.
I feel so much better waking up today knowing everything is now in hand 🙂
Sorry you’re going through a horrendous relapse. They can be quite devastating can’t they?
I’m also in tears when I see my MS nurse and she has put it down as depression, even recommended to my GP to put me on anti-depressants. I have said that I’m not depressed, just fed-up, as I do know the difference.
I feel like a hypochondriac too, but that could be because I am asked by a professional if I feel this or that, but even if I’m not I am always waiting for this or that (the next thing) to happen. My mind is always on how I am feeling and I just can’t forget the MS for a
Hope you feel better soon.
They sure can – it’s creepy how quickly they can sneak up and dominate everything. Totally know what you mean – the difference between depressed and fed up is fairly massive! A bit sad to hear your MS nurse has been so quick to suggest anti-depressants?
Hang on in there. My MS could not be more different from yours, opposite in every possible way but I can relate to the way you must feel. Fatigue, feeling rubbish, loss of motivation, why me and loads of other questions.
If possible think about the now and try not to be sidetracked by tomorrow. Remember to smile and blog as well
I know what you mean, it’s too easy to get distracted by an uncertain future 🙁
PS its our medecine as well
I’m a tad concerned for you too – you’ve had 3 rounds of Lem and it doesn’t appear to be working too efficiently. Time for the medics (and you), to consider HSCT?
Sending you hugs of the non-MS variety! xx
I guess it’s a tricky one – I was diagnosed with rapidly-evolving RRMS (or highly active), so I’m just happy to have been offered the strongest medication possible. I know what you mean, but the best thing is, Lemtrada has held back the worst of MS for me!