I just thought I would check in and see how everyone is doing? I think everyone around me is sort of fed up of me talking about MS, or things I’m struggling with, so thought I would post on here with like minded people
I’ll start - things I am working through at the moment:
Irritability - my fuse has been very short over the past year, and I keep snapping at loved ones, finding near everything annoying - referred to a MS Counsellor to talk through things, which is helping slightly in terms of managing mood changes.
Spasticity and balance - the winter has not been kind, and I have felt very stiff in my legs and balance has been off; bought a walking aid a few months ago, to help on bad days with stability when walking, and have had a few sessions with a neurophysio, who is given me tailored exercises to do to strengthen my weaker left leg and ease foot drop. Start a 6 week balance class at the hospital next week.
Tiredness - not quite sure it is fatigue (but there has been a couple of instances after travelling on public transport, which was quite stressful, where when I got home my legs have felt like led and I’ve been really tired). I think the tiredness is mainly because of my immune system being lower from my Mavenclad DMT, but just trying to listen to my body. I find myself nodding off various times during the day, and I feel very tired during the day and energy levels seem to crash by early afternoon.
Temperature changes - it’s 20+ degrees in London today, but I have felt very cold, and am currently in a big fleece, two pairs of socks, and sitting under my duvet. It’s weird. On the flip side, I also notice when there is a slight increase in temperature and it really affects me.
Breathing - I really struggle to take a full breath. At the beginning, my MS nurse and I thought it was MS hug. But consultant said it was most probably anxiety (which is something I struggle with) and the high temperatures (as this ramped during last summer’s heatwaves). I also saw a GP, who also thought maybe anxiety but sent me for Chest x-ray, and everything was clear. There have been two instances where for a minute or so I have struggled to breathe, like someone had cut off the oxygen to my lungs; once it happened in the middle of the night and I woke up, and another time when I was just sitting still. I personally think it is a mix of anxiety but also chest muscle weakness from MS; keeping an eye on things, and wondering if to see a throat/respiratory specialist to make sure throat muscles are fine.
PIP - I had a telephone assessment a couple of weeks ago for my personal independence payment claim, which was initially a video assessment, then changed to telephone, then cancelled at the last minute by DWP and rescheduled for the following week, so all fun and games. I personally think it didn’t go too well, and although I spent ages completing my form, and providing evidence, I felt like I forgot things and didn’t answer the questions very well. I had also spent the week prior (where it had been cancelled) and the morning before the call, feeling very anxious, which I don’t think helped. I hope the case manager calls my consultant and MS nurses to discuss things with them. One funny moment - asking me, on a telephone call where she could not see me, if I could make a fist with my hand, touch my head, and touch my nose….I said yes, but some of the questions, seriously, “how long do you think it would take another person to walk around the supermarket?” I don’t know, if you get distracted by the middle aisle in Lidl, then quite a long time!
I think that’s it for now, thank you for listening to me ramble, and take care x
Yes, folks who don’t have MS can get a bit fed up hearing from those who do. There are all sorts of reasons for that, some honourable and some less so, but we’re not going to solve that one, are we?
A couple of thoughts on your post:
Irritability.
Absolutely! I think some of our capacity to be easygoing and take things in our stride is now permanently occupied with the stresses and strains of having MS and that can leave us a little short of patience with other people’s nonsense.
Balance etc
Good for you, getting an assessment and some exercises. I’m on the same road myself. On walking aids, it’s a bit of a moment when one comes to need walking aids, I know. In my own case, it dawned on me that if a hiking pole or two (preferably two) was a bad look, it wasn’t as bad a look as weaving around like someone who had put too much gin on the cornflakes. Or as bad a look as being wheeled in to A&E with an avoidable falling-over fracture.
Tiredness
There are just so many good reasons for it, I don’t know what causes what either.
Temperature
A lot of folks with ms (me included) struggle in the heat.
Breathing
Well done, getting checked out to make sure there’s nothing serious going on. You’ve probably had all the specialist physios you can eat for now, but you might like to consider consulting a respiratory physio? I saw one for a few sessions some years ago after. had had pleurisy and needed to get my breathing back into shape. It was very helpful.
Another suggestion - have you come across Patrick McKeown? He wrote a book called The Oxygen Advantage and it’s all about learning to breathe better and to help anxiety in the process. I thought it would be woo and nonsense, but in fact I found it incredibly helpful and I have been doing his exercises on and off for years now. For someone inclined to anxiety, I really recommend it.
Hey, thanks so much for sharing all of this — honestly, it doesn’t sound like “rambling” at all. It sounds like someone doing their best to navigate a lot, and doing it thoughtfully too.
First off, you’re absolutely not alone in feeling like people around you get a bit worn out hearing about it — that’s sadly really common with long-term conditions. Spaces like this exist exactly for that reason, so you can say it all without holding back.
It actually sounds like you’re handling things in a really proactive way, even if it doesn’t always feel like it:
While you rather impressively are doing all the right stuff, these are things that have helped me over the years.
2 Balance/Foot Drop
The best solution to foot drop I have found is the remarkable FES. You might not need it right now, but neither did I 25 years ago and would not be walking at all today without it. Unlike tradition splints where muscles just waste a FES can built strength and worth checking out. There is an excellent walking clinic at UCH in Queens Square and your GP can refer you for assessment. UCLH Functional Electrical Stimulation (FES) Service | Specialist neurorehabilitation
6 PIP The Benefits & Work guides are useful if you need to appeal decision. Full membership is about £20, but some information is free. Personal Independence Payment (PIP) appeals
