It’s almost May and it might as well be February, as I’ve been in an MS-imposed hibernation since then. All my Grand Plans for 2017 have come to zilch.
This latest relapse has been tough and it’s taken all my diminished strength to get through it.
As always, life shrinks to the absolute bare minimum. It’s a case of getting through the day. The pain has been crippling, the fatigue all-encompassing.
As I emerge from my MS cocoon, it seems the world has moved on. I’m still wearing my Nordic sweaters and ordering ready-made hearty soups from Tesco. I’m watching dark Swedish dramas on telly and wondering where to introduce dramatic black paint into my house. In short, I’m still in Winter-mode when everyone else has dusted off their shorts and barbecues. S’not fair.
If I had the energy, I’d host a pity-party for one, just like I did way back when I was first diagnosed. It’s been an incredibly long relapse compared to the usual three-weekers.
Anyway, enough whingeing. The Teenager and The Cat have been getting on with their lives in the meantime and handily for them both, I’m pretty much always available to speak to as I loll on my sofa trying to maintain a semblance of normality. I’m a captive audience:
- The cat enjoyed her course of steroids (it cracks me up that she was on the exact same ones as I’ve taken for relapses in the past) and her fur is growing back. Mind you, her tail looks a bit weird as it’s still fairly bald at the bottom.
- She’s being bullied by a new cat on the block, resulting in sudden scamperings into the house, nearly giving me a heart attack.
- Two mice have been left right outside the back door. I stepped on one of them.
As for The Teenager:
- He pushed his way through the 1000-strong crowd on the Common outside my house to get a selfie with Jeremy Corbyn when he spoke here last Friday. Random, but true. Jeremy looks slightly bemused.
- He has finally worked out how to use the oven; luckily the house didn’t blow up when he left the gas on overnight after cooking a couple of chicken breasts. But at least he got his protein.
- I attended an overnight MS Society Council meeting at the weekend and said to him in a misplaced spirit of generosity, ‘why not have a couple of friends round?’ And, ‘feed the cat’. Long story short, ten hulking teenagers were squeezed into my house, my recycling bags are filled to the brim with beer cans and I’m still finding bottle tops down the sofa. The cat is alive.
Hopefully, I’m turning a relapse corner and I can start playing catch-up on the year which is passing me by in a blur of supreme inactivity. Or maybe I should throw the towel in and start writing my Christmas list …
p.s. I know there’s a spelling mistake on the picture – just too tired to correct it …
Hallo Barbara, Glad you’re feeling a bit better. It certainly knocked you for six didn’t it?
I have never had a relapse like that which makes me think that I wasn’t relapsing remitting as I was first diagnosed. My MS nurse has written on letters to my GP (of which I get a copy) that I have Secondary Progressive MS. I don’t know what that entails and I don’t know if I want to know. It’s all pretty gruesome whatever it is. All I know is that my life has stopped abruptly and after ten years you’d think that I would be used to it and accept it, but I can’t. I don’t want to.
I’ve found with MS you can never make plans of what you want to do with your life in the future.
Sorry, I’m wittering on again, I didn’t mean to, but I’m afraid one thing leads to another and I get a bit carried away.
Anyway, it’s good to see you back and I hope your improvement carries on even if it is slow.
Please witter away, I love it! You write exactly like me 🙂
From my limited knowledge of secondary progressive MS, I’m not sure there are relapses as such. I was at a really interesting research talk recently where the neuro talked less about distinct MS classifications and more about a spectrum, which makes a lot more sense to me.
Yup, this relapse has been pretty brutal, emotionally and physically. Believe me, I’m trying to stay upbeat but it’s been hard at times. Hopefully it will all soon be behind me. At least it’s not like when I was first diagnosed, with relapse after relapse with barely enough breathing space.
I hope you’re doing as well as possible?
Joan, I totally understand and relate to what you’re saying. I’ve actually started to plan regardless though ( on the advice of a good friend) the worst that can happen is I have to cancel!. I found myself not doing things in case I felt bad, dizzy etc. But I recently forced myself and I managed well and was glad I had. It’s definitely easier said than done and I know I definitely have to be in a certain frame of mind. But I’m defs trying to make the effort when I can, even if it’s something small. Take care x
What a fabulous comment. Good advice 🙂
Yes, Barbara, it was good advice.
Annie, you’re perhaps a bit more positive than I am. I still go on outings and visits. Last November we went to Harry Potter World at Elstree (I think) Studios for our daughter’s birthday and other short term trips, but I was talking more about long term plans. There are places I would like to visit, but know that I never will now. It’s all down to my mobility, or lack of it. I’m sure I’m not on my own, that many MS sufferers feel exactly as I do, but I’m the one who moans about it in public. Something which I would never normally do. I usually put on a brave face and think these thoughts in private. This blog has some kind of effect on me.
Take care everyone.
And you should complain!! If you are finding some things difficult, how can we make it better?
I’m a member of the MS Society Cymru Wales and would love to hear about the difficulties you have. Honestly. I’m known for not holding back on certain issues!
Glad you are on the mend. Onwards and upwards….spring is in the air. Ditch the Nordic sweaters for the foreseeable…. you got this girl??
Thank you! I shall unleash my bingo wings upon the world with pride 🙂
?? yeh that’s a problem isn’t it! I’m always looking to disguise/hide mine ??….. but I guess if the world doesn’t like us unleashing them, the that’s their s**t!!! Keep well?X
Love that!! I’m determined to flap my bingo wings, come what may!
Watch this space …
Come on Barbara you can do this. You are strong and we all have bingo wings. Although with MS if someone looks well it does not mean they are feeling it but I have to say you were looking really good on tuesday. I know it took lots of effort though. See you soon. Off for a nap now its hard work having shower. See you soon. Xx
You’re an absolute sweetheart, thank you! It was lovely to be at such a great talk and catch up with everyone. I always find something really comforting, being with other people affected by MS.
I’m off work today (or as the Boss would say, what’s new?) so have resumed my usual position on the sofa 🙂
Great to see you both!
You too. X
Thank you for your reply above and it is kind of you to offer help, but with all due respect I don’t need therapy or counselling. I think the attitude which has come out in my comments is due to having recently written a poem about MS and obviously I had to reawaken negative feelings and emotions and they are perhaps still on the surface.
I go onto other blogs which haven’t anything to do with MS or health in general and leave many comments and unless it is relevant to the posting I never mention my disability.
Thanking you once again Barbara for your concern and offers of help and I’m glad you’re out of your relapse.
Totally understand! I meant physical barriers/difficulties that perhaps the MS Society could/should address, that was all. I probably didn’t word it very well, sorry!
I know what you mean about writing bringing stuff up and it can be really tough at times.
I hope you have a great weekend with your family, despite the weather forecast 🙁