My husband and my family are always very supportive but sometimes I don’t really think they understand how I feel. Especially when I am so fatigued, I think they probably just think oh she is tired again! My lovely hubby is a bit of a night owl and never goes to bed until 1am ish and when at about 10pm I start yawning I can see the look on his face as if to say here we go she will be off to bed in a min. Sometimes I feel really guilty and try and stay up for a while, but luckily I am still working and I need my rest. I don’t think at all he does it on purpose I just don’t think he can grasp how I am feeling. Sorry for the winge Karen x
You say they’re supportive, but they don’t understand - have you told them how you feel? Even my colleagues at work (admittedly mostly ex-GPs and nurses - I work for the medical school in Aberdeen) spot immediately if I’m having a bad day, I’m sure your husband can see when you’re tired and perhaps pushing yourself further than you should. Just talk to him and the others that you’re worried about.
All I can suggest is to be honest. You’ll never be able to explain to someone who doesn’t have it exactly what it’s like to have MS, so I think you’re aiming for the impossible there. But that doesn’t mean you can’t speak frankly about how you’re feeling.
I know some people advise we should avoid the word “tired”, and always say “fatigued”, otherwise folks assume it’s the same ordinary tiredness they get. But on the other hand, unless you can explain in ways they might have felt - at least sometimes - it doesn’t really help. If it feels like jetlag, or a hangover, or something else a healthy person might have experienced, then use that analogy!
Explaining fatigue to a non MSer is very very difficult. Karen (Rizzo) is taking a break from the boards for a while so I hope she doesn’t mind me quoting her:
When there is damage in the brain, the body tries to repair it and/or create a new route to still be able to do that function. The more damage, the more difficult this is. So people with MS use a lot more of their brain to do a task than people without MS. That’s hard work
This is a nice one to point out to people. I once was moaning to my physio about how tired I was after taking the dog out on my mobility scooter, after all I am just sitting there. She pointed out how I was working hard to keep my balance, cope with my vision difficulties, bend over to pick up the dog doo doo without falling over etc etc. It certainly made me think… A “normal” person can just take the dog out – I have a whole body work out, it’s no wonder I’m shattered!
I think one of the most important things is to stick to your guns and be vocal about your needs. If you need to go to bed at 10.00, so be it. If you can’t do certain activities then that’s the way it has to be. Very early on in my MS journey someone told me that people’s reactions to my condition/needs were not my concern. It was not up to me to make people feel good. Although that sounds very blunt it’s true in a way. Your husband will understand, you are not going to bed to avoid him. I have tried never to whine about how tired I am just a matter of fact “Sorry but I need to sleep now” It seems to work OK, my family all seem to get it.
Thank you both for your replies, I think it might help for him to read this post and the replies. Hope your both having a good day and thanks again Karen. Xx
You could get them to read the spoon theory aswell.
Thanks Jane you are right I shouldn’t have to explain all the time, thank you so much and I am sure Rizzo wouldn’t mind you quoting her and hope she is back soon Karen. Xx
Hi Pip. Spoon theory ? X
My OH gets a bit fed up with me being asleep of the sofa soon after the kids have gone to bed! But he doesn’t come in from work most days until nearly 8 and I get up at half 6 so that I can get everyone organised before school etc. He does tell me not to do stuff, to rest, but when I want something doing I want it doing then and there, not at the weekend when he decides he can do it, and not after asking 3 or 4 times. I just do it myself and then get further into trouble.
You can google the spoon theory! It is quite emotional!
Thanks I will google it now Teresa and thanks for your reply ggmarch x
Pip - Had forgotton about ‘the spoons’ .Just re read it - so true… thanks.
Karen - hope you have plenty of spoons for the weekend
Hi again Karen,
I remembered something that might be useful to explain the fatigue (tiredness just doesn’t cover it does it?). A friend of mine recently had a flu-like cold - he felt really drained, and it was then that he understood what I experience on a daily basis. It gave him a bit of a shock - I rarely complain about anything to do with the MS, there’s nothing that can be done about it, and people get bored listening, so what’s the point?
To try to explain, I usually use the low battery analogy - I say it’s like having a set amount of energy for that day, which may be more or less than the previous or the next day, but you don’t know (MS is sneaky like that, likes to spring things on you). When that energy is used, the batteries are drained, and there isn’t much you can do about it, all you can do is wait and see what the next day brings.
Hope this helps,
Hi Louisa, thanks again for the support thank goodness for this site, I must admit when they changed It i stopped coming on here for a while but now I am used to it I find myself on here a lot more. Take care Karen xx