When I’m experiencing them, I’m never quite sure if a sudden surge in MS symptoms is a relapse or not.
I only get the definitive answer when I wake up one morning (days, weeks, months after) and I just know it’s over – it’s kind of a retrospective thing.
Today, hallelujah, is one of those days. The murky fog has cleared, my energy is restored to its usual low level and the world seems a
much brighter place. I look back over the last couple of weeks and realise just how awful things were.
To begin with, I ignored the numbness down my right side, the dodgy tingling hand, the weak arm. Then came the beyond-out-of-proportion tiredness and jelly-brain. As is usual with a relapse, my world shrank. I did the bare minimum and I did it badly. Work was a nightmare (Boss not happy) and when I got home I slept (Teenager not happy), woke up and barely moved from my sofa.
After that came the symptom that left me stunned – my body seemed to want to pull to the right, so walking in a straight line was a bit tricky. I ended up turning right an awful lot, so much so that I might as well have been walking in circles. I slammed into walls, fell with a thud into my washing machine and tripped down five stairs, ending up lying dazed on the floor, squished between the bottom stair and my bureau, finding a long-lost catnip ball in the process.
The most worrying episode was when I was in the shower the other day. Again, my body wanted to jerk to the right. Unfortunately this meant I fell out of the shower and cracked my head against the toilet. As I was lying there, I was ever so grateful I hadn’t knocked myself out as the thought of paramedics finding me naked on the floor, crying and trying to cover up with a single flannel was unbearable.
After counting the cobwebs on the ceiling and noting the gaps in the silicone seal around the shower screen, I staggered to my feet, put my dressing gown on and sulked on the sofa for the rest of the day. Again.
So it’s over, for now; I’m back to the baseline, which seems to rise with every relapse. Whereas before I fretted about every tiny symptom, diligently jotting them down in my ‘MS Symptom’ book (one from 2013 – ‘my nose seems to itch more and swallowing is a bit of an issue’), I now have a much more ‘yeah, yeah’ attitude. It’s about accepting it and living day to day.
I can say that now. If you’d asked me last week however, I’d have given you a withering look and sighed.
I can’t wait to reach this level of progress. For real. I haven’t had a baseline yet and I keep wondering when that’s actually going to happen. Good for you! 🙂
I hope it happens very soon for you. It’s taken me over five years, so I know it can seem impossible at the time. I’m amazed how so many of my symptoms are now ‘Normal’, whereas before (as they were all new) they seemed horrifying. I mean, they still are in a way, but I’m learning to live with them. I think!
Back in 1998 I kept a diary of every symptom. Just looked – one entry was mentioning pins and needles in my hands and said “thumb now affected”. I almost laughed when I read it.
Now, I no longer keep a detailed diary and am with you and your ‘yeah yeah’ attitude. 🙂
That’s exactly like me!! Yesterday, I mentally counted every single symptom I had. Whereas before I would have noted them all, yesterday I just thought, ‘oh well’. What can you do?!
I just wrote something really eloquent and cheery about your good news, but my handtwitched and I have no idea what happened next. Anyway, im delighted for you. Enjoy the good days ahead and keep on writing, you know you want to. 🙂
Thank you!! I’ve done that so many times, including a fab blog post I completely failed to back up. I pressed delete by mistake (dodgy finger) and it was gone forever 🙁
It’s amazing how you mentally adapt when the only other options are terror and/or insanity.
Things that one was terrified by having for more than a few days are now things that you’ve had for so long that it’s only if someone asks that you remember that this isn’t how you’ve always felt.
‘Tis a bugger to be sure.
I completely agree with you! It’s weird/frightening/liberating just how used to MS symptoms I have become.
‘Tis surely a bugger’…
I have been pushing myself so damn hard of late after my Neurologist told me that the symptoms I “claim” to have don’t match with the lesions on the MRI.
I now feel like it is all in my head and am going round the twist; which given my habit of walk in circles is very apt.
I may end up corkscrew myself the the other side of the world ? xXx
No!!!! That’s awful. Do you have a confirmed diagnosis?
I remember a couple of years ago I went armed with evidence of several horrifying relapse only to be told nothing abnormal showed up on my MRI. I felt like I was either making it up, embellishing or going slightly mad.
Yeah diagnosis was confirmed in 2015. I totally get what you mean about feeling like you have embellished your symptoms.
It is truly hard enough battling my symptoms every day and explaining them to others without my Neurologist making me feel like a fraud xXx
Know exactly what you mean. For one of my appointments, I saw a locum neuro and he made me feel like a complete fraud too. I left in tears. Such an unpleasant experience.
You can’t imagine my relief at your last post. Not because you had horrifying symptoms obviously but because that’s exactly my last experience with an MRI. Had an awful month, then MRI, no new lesions. Obviously, you are grateful for this but then I’ve become so self doubting of myself and my own judgements on my day to day symptoms. So now I’m probably doing myself no favours when I do feel rough and try to ignore it. MS is so complicated!
This happened to me too! I had a terrible time of things a little while back and was so sure this would show up on an MRI. Like you, I was relieved, but also stunned and wondered if it was all in my head. It really did make me doubt myself.
Don’t forget, as my MS nurse told me, an awful lot just doesn’t show up on MRIs.
You’re totally right, MS is complicated and it sometimes makes my head hurt just to work it all out!!
It’s at times like this that your blog feels invaluable to me. I take so much reassurance from that similar experience
Thank you! X
That’s such a lovely thing to say, thank you! It means a lot to me 🙂
One thing about having an unintentional fall within the house is……you get to see all those cobwebs that have been collecting since last autumn….the previous year….and even further back. I guess it’s all about perspective. Spring is coming…I look forward to seeing the colour and the scents in the gardens …….always come up smelling of roses!????
as for SPRING CLEANING??
Most definitely! My skirting boards are atrocious :-(. Yup, definitely about perspective!
I can’t wait for Spring. I have a huge pot of daffodils out in my back garden that I can see from my kitchen window when I’m washing up and it’s gorgeous. Roll on the longer days.
What’s Spring Cleaning???
I too was told my lesions hadn’t changed when I had an MRI scan and was in hospital for 4 months last year (v long story) so how come I now have full blown ‘S (SPMS I’m told). Gone from furniture walking,able to furniture walk and take myself to toilet, to now getting used to carers 4 times a day, hospital bed, hoist and an electric wheelchair! My consultant told me you don’t get all the MS symptoms in one go. Really? So not being able to move legs and torso anymore is a figment of my imagination?
I’m so very sorry to hear this. It must have been horrendous for you to go through such a rapid escalation in your symptoms, especially when you’re told there’s no new lesions. I guess this is why MRI’s can sometimes be so hit and miss and neuros really need to get our story too, what we tell them in clinic. Not everything can be confirmed by science 🙁
Wishing you all the best and thank you for sharing this,