The Boss fell asleep at 8am in a Wetherspoons pub yesterday.
It was a bit embarrassing, especially as I’d ordered a large breakfast and now couldn’t feasibly pretend we were going to share it.
So, I tucked in. Then I woke him up and offered him a piece of toast. He groaned and went back to sleep, clutching his glass of lemonade.
Bless him, The Boss had food poisoning. All the way to work he’d explained in great detail every weird and wonderful symptom he was experiencing and I tried my best to be sympathetic, but drew the line at just how many bottles of bleach he’d had to use in the loo.
I shook him awake when I’d scooped up the last of the sausage. He appeared wan and dishevelled, not helped by him not having been to a hairdressers recently. I smoothed his hair down, sent a text to our job explaining my plight and helped him back in to the van. He got home and slept all day and most of the evening.
He was stunned that he could feel so weak, literally unable to work. Well, I was on safe territory here, having been found fast asleep on a pile of plasterboard not so very long ago, and woke to find the home-owner, two electricians and a building inspector staring at me with mild bemusement.
Perhaps he now understood that fatigue is dire, but weakness is worse. The ‘walking through treacle’ analogy has never been better served. I can sometimes cope with fatigue, in a minimally interesting way, but weakness absolutely destroys me. It’s at that point that I reach absolute Dead End. Nothing happens. I lie, prostrate on my sofa, wishing I had a Magic Elf (or a dashing new boyfriend) who would load the washing machine, cook a simple dinner and soothe my fevered brow.
No such luck. I lie there, desperately wishing I could get up and … move. I pass many evenings in this state. The Teenager has witnessed me sleeping, bolt upright, eyes wide open. But I’m not there.
Today, The Boss picked me up, hollow-eyed and exhausted. I pretended to vomit, for a laugh and suggested we have some fried chicken for lunch. I fell asleep in the van at one of our jobs and woke up on the motorway. Luckily The Boss was awake.
I sent him home after he dropped me off this afternoon. I’m shattered, with a low-ish-level relapse rumbling. My right hand refuses to work properly and my balance is shot. The norm. The Boss will get better.
As for me, I’m slowly dying in the face of the DWP.
I’d choose KFC food poisoning any day …
Oh no, not another relapse , really hope not? . Yeh I think the food poisoning would be a definite preference for most of us. Rest up and fingers crossed you don’t get any worse. I’m still feeling weird as hell in the head, and if someone poked me I think I’d fall over? Hoping light at end of tunnel for both of us x
I hope not too – it’s like a low-level everything going wrong thing. Perhaps it’s all the DWP stress 🙁
Really hope you feel better soon! Especially at this time of the year, when there seems to be so much to organise!
Ps are you going to be able to get more of the Campath/Lemtrada at any point? x
I saw the neurologist a couple of weeks back. I was really lucky to have a third course in 2015 and the good news is my scan was ok this year. The main thing is, my neurologist has assured me that if I need a fourth course in the future, I will have one, which is a relief as I know many people struggle to access even the two courses. X
🙂 Keep smiling! x
Hope it is only a minor relapse and doesn’t develop into what you had early in the year. Keep soldiering on (as if you have a choice).
Just a quick question. How often do you see your neurologist? I saw one at the beginning of my downfall with MS when I first moved to Wales and after that an MS nurse. When I asked her when I was going to see him again she said that in Wales, after the first consultation all the appointments are with an MS nurse. Yet here in England an old work colleague of mine whose daughter-in-law has MS sees her neurologist every year. I’d be interested to know.
Also you and Annie seem to be on medication for the MS. I have never been offered any.
I see my neurologist every year and the same for my MS nurse, diary wise this works out as seeing someone every six months. I think it was more straight after Campath and I saw the neuro every six months. I wonder if you could ask your MS nurse to arrange a neuro appointment for you? And maybe them you could discuss treatment? I’m so surprised you’ve never been offered any?!
My MS nurse told me that it isn’t the policy in Wales to see the neurologist every year after the first meeting, after I told her about my friends daughter-in-law. I took her at her word and didn’t question it further. If it wasn’t for your blog I wouldn’t know any difference. Makes me wonder what else I haven’t been told.
I have been put onto Baclofen, but that was by my GP in Wales after I went to him with a painful groin.
I believe it’s a NICE recommendation that all MS patients see a neuro once a year. Mind you, in South Wales there must be several thousand of us, so I’m not sure how this would work! I think it’s definitely a case of getting another health professional on board?
Joan I’m not on any medication for my MS … I see my neurologist every 6 months …. although my ms is relapsing remitting apparently the relapses aren’t significant enough to warrant a DMD. ( they feel pretty significant to me) so
I’m still in the watch and see bracket. My neurologist is relatively accessible if things get bad for me which is re-assuring I guess. Seems crazy that you can’t see a neurologist. My gp is able to send an interim referral if I need one. Might be worth chatting to your gp? X
That’s a good point – we have a rapid-access clinic here in Cardiff, which is excellent. I’ve had to use it once or twice in dire circumstances!
But yes, good idea to chat to GP. Mine has been brilliant 🙂
Thank you both for advice. My MS (so my MS nurse in Wales told me) is Secondary Progressive. I’m not sure what that entails or how different it is to relapsing remitting.
Now I have moved back to Devon and I have just had my review with my new GP. She is going to start the ball rolling with the MS people in Exeter. Hopefully they will enlighten me further.
I really don’t want to take any more medication than I am on for various other things, but if it helps my MS or makes me feel better in myself then obviously I will.
Thank you both once again. It’s quite reassuring to know that I have two MS ‘buddies’.
That’s great news about your GP! I hope they can speed things up for you so at least you know what your options could be.
You’ve definitely got buddies here!!
Great Joan, hopefully you will get some answers soon?