I’m an oldie but not?! (Scratch head) Just been here a long time but don’t post much lol SO. at 40 I’ve finally got my soul mate, the man I’ve loved and lost for 15 years is my love now! But we are together now…BUT. Yes there’s a but, I have spoken to him, got him to join here as a carer etc, but he can not fathom how I look great ( Fake tan, great moisturiser, fantastic hairdresser, great at make up, and fab at a winning smile) But I can’t recover from Saturday night dinner out with drinks, going to friends on Sunday, and then going to town on Monday (today) Thinking that a good nights sleep will cure it all $~}|€€}!}€~!~$ " get to sleep earlier" I can’t because of the pain! I could sleep for days and not feel refreshed!
I had such a bad week last week it’s a miracle I got out on Saturday. He wants to understand, but he’s a grafter, a hard worker and would do anything to help me, but he can’t grasp the fatigue and pain? I said I can’t remember what it’s like to wake up and not be in pain, but I couldn’t express the depth of it. I’ve shown him all the things on MS fatigue, but he’s so fit and I’m so attracted to him I love, well you know… but a night like that and I’m painfully tired. But how do you explain that life makes you painfully exhausted, and causes every single part of you to hurt to the bone??? And nothing takes it away? You just have to learn to deal with it? And sometimes you can’t, FOR DAYS! It’s not self pity it’s the monster in us that we didn’t ask for?
I don’t know how to do this with him without sounding pathetic?
it’s difficult for you if he doesn’t understand, I’m extremely lucky in that my husband just says “so what?!” if he comes home from work and I apologise that I didn’t really do anything… he just somehow he supports me and tells me it doesn’t matter. Yes, I still have wobbles over things as yes, I was independent, smart, slim and ok looking… like you, I do think how can he still love me? We go thru good and bad patches too but when I’ve been really low he’ll admit that he has no idea how I can keep going and say (this was just the other day) “No, I’ve got a f**king headache, I’m not ill, you’re ill” as overtime he’s understood things more and more.
Have you ever taken him or asked him to take you to any of your hospital appointments? Any of them, not just your neuro, your MS nurse, physio etc.?I think that helps make the weird stuff a bit more real for them. Rob’s comment after seeing my first brain MRI “christ, you’ve been shoving marshmallows up your nose haven’t you?”
I know it sounds silly but I think they start to understand that they can’t possibly ever really get it because you’re the one going thru it, not him. I couldn’t get Rob to read this stuff if I tried but a few months ago he asked for my blog address as we did have a conversation about it, quite a serious one and he later said he’d actually read a few of them.
There’s a couple of key things I told Rob too tho and seriously, just small things but I think it’s helped both of us just me saying:
I’ve been reading the forum and we all feel really daft doing that touch your nose then touch the neuro’s forefinger! I don’t think any of us really understands but you can’t help feeling that they’re having a laugh at you (he’s been there and seen how bad I am at it).
I’m quite tempted to get an MS t-shirt I saw, it says… (that always at least puts the thought there)
I can’t believe the dirty looks I got until I got out the car with my stick at the polling station (when we parked in the designated disabled space).
He needs to know that looking good is not associated with how you feel inside. I have one friend who gets it and she says “you look great, no I know but you really do look great”.
OK, I’ll shut up now but hope you get the gist of what I’m saying, It is a nightmare when you start losing the confidence you had in your own body. I was once told I walked like a panther and that was by a work colleague (day job). Teaching pole as a hobby always meant I had a load of female support. I miss that big time now but have even had a compere stopping mid-show when she spotted me - she introduced me to the audience as someone that had been a great dancer/instructor blushes I miss my girls big time. Thankfully, I still see some of them now even tho I stopped teaching 2.5 yrs ago. I totally understand how this disease messes with your confidence.
I went for my mammogram last week, and also to the cemetery (30 minute drive I was driven there) then my brothers house, climbed up a mountain it was ludicrous his house is accessed via a huge slope with steps.
So now since Saturday i have been in agony and pain and exhausted. Yesterday I sent a UTI sample down and my nurse rang me i have another bad UTI.
Every time i do too much i end up with a UTI.
No one would understand. Fit people look at us and think wow you look well yeh well I am well but i am NUMEROLOGICALLY challenged not sick lol.
Find the story of the 12 spoons and let him read it. I showed it my sister and she thought it was fab, and now realises just how limited i am. xx
I agree with crazy chick, let him read the spoon theory, I think that is the nearest you will get to explaining fatigue to him, as people think it’s being really tired…but we all know different.
Oh Polly I do feel for you, I ended up overdoing things a week ago and the fatigue and weakness was unbelievable, I was scared i wouldn’t be able to stand up again i felt so ill. and i’d just had a week of pretending that i was normal and pushing my limits , I often think thats why others expect more of us because we are used to pretending we are okay…my children sometimes struggle to understand, they would never do it on purpose bu sometimes they forget and because i don’t like letting people down I will push my self and convince myself i’ll be fine often rationalising that i’m sat down in my wheelchair anyway so it will be okay just going shopping with Molly or having my grandchildren for an extra day…we must all be similar on here. The spoon theory is excellent it was one of the best things that I read, and now Lee is usually the one who reminds me that i’m in danger of using tomorrows spoons,… so they are learning, but its probably me that needs to listen, if Lee’s away I often do too much because he’s not there to stop me.
Take care I hope you feel better soon Hugs Michelle and Frazer xx
Often I am so exhausted I don’t care a fig if anyone gets it or not. I can get so tired I can’t even think straight and it’s even too much to talk. I often get told off for being grumpy and I honestly couldn’t care less.
I haven’t done anything and I mean nada zilch sod all for the last month since my last fall and I am exhausted doing nothing. I am short tempered and miserable, luckily Heather knows I feel crap and leaves me to fester but I know I will get over this blip. I have to I can’t keep on feeling knackered, until it passes I am a grumpy old bear. I had blood tests today after the urine test came back clear if I had an infection it could be treated but fatigue is invisible other than I look crap but I always have done so no real change there then
It hard for those who don’t understand, even my GP struggles to understand! So what chance has anyone else got?
I agree with Pam, the spoon theory was one that helped both me and the friends who stayed with me after my health deteriorated, start to understand the difference between general tiredness, laziness and fatigue. Although I’d been a nurse and thought I understood fatigue, I didn’t! I’d always been busy as a single mum with a career I loved and a house with all the usual unnoticed work associated with all this.
I was really hard on myself when my symptoms kicked in, and this only got worse when I injured my neck, underwent surgery and then got this lovely diagnosis. I went from full speed to useless. Reading the spoon theory helped me realise that my exhaustion following minimal exertion wasn’t just me being pathetic, the author really understood and that allowed me to ease up on the frustration I was feeling, to learn to pace myself and understand that each day or even hour could change the number of spoons I had in my internal cutlery drawer. Definitely worth a read by both yourself and family and friends.