I’m really struggling at the moment, because although I feel better in some ways (dizziness is only an occasional annoyance now), I am just getting more and more tired. Yesterday I got home from work and had fallen asleep within an hour and didn’t wake up til the early hours of the morning. Admittedly, I did then do a bit of work (was needed for today!), but went back to sleep afterwards, and stayed in bed for as long as possible before getting up. I’ve then felt absolutely shattered all day, and really just want to curl up and go to bed now (if only I could!) Despite this, I can’t help but think that I’m just at a normal level of tiredness, or that I’m just being lazy and am overreacting. Basically, I often feel like a fraud which means I find it really difficult to ask for help. I don’t want to let anyone at work down, but at the same time I am really finding things difficult (though fortunately not impossible - yet!)
Does anyone else feel like this? And how on earth do you cope with feeling beyond tired all the time?
Hello, I know how you feel I have felt more than just tired. Even when I have rested I could sleep the clock round.Not sure if we can get anything for fatigue, I think its one of the worse symptoms that we suffer from. We are not lazy just suffering from a horride disease.
Thanks for the reply. Really, I know I’m not being lazy - it’s certainly not for lack of trying! I think I just desperately want to be ok, and it’s in my nature to beat myself up about things that aren’t my fault (so telling myself it’s laziness rather than accepting I do feel like I’ve been hit by a truck despite having ‘x’ amount of sleep!) And for me at the moment it’s certainly the worst. I can cope with the funny walk/odd sensations in my leg (even when I’m reduced to a shuffle!), but at the moment the fatigue is the thing that makes me want to curl up in my duvet and cry.
I know what you mean. I don’t think you’re being lazy, reading what you’ve said - in fact, I KNOW you’re not.
But I do exactly the same: wondering if I’m making excuses, and just need to try that bit harder…
I think, with me, it’s partly because the illness has been (luckily!) so gradual. So when it first started that I didn’t feel like doing things, it did feel as if I still had a choice - as if I was just being lazy, and NOT that I was ill.
And to an extent, even though I now know for sure I’m ill (not lazy), I still find myself having these internal doubts. Also because it doesn’t show on the outside yet for me. So just as other people don’t always realise there’s a problem, sometimes I don’t realise myself. I catch sight of myself in the mirror, and think: “You’re OK; there’s nothing wrong with you! Why can’t you just DO it?”
I know I have this little slip of paper in the kitchen drawer, that says I have a serious illness. But although I do believe the slip of paper, I sometimes still blame laziness!
Tina, I could have written that post myself! I find I’m constantly questioning whether I really don’t have the energy to do things or if it’s just a motivational issue.
Like you, my illness has been very slowly progressing for 8-9 years and I think I’m really lucky that I’ve been able to slowly adjust to the way I am now.
There are meds available for fatigue - modafinil and another one beginning with A which I can never remember the name of! I’m on modafinil, it’s not a cure for fatigue by any means but it does help me. I work full time and to be honest, it’s a struggle and it’s getting harder - I’m not lazy either, but I can certainly understand your reasoning for telling yourself that you’re being lazy as opposed to accepting the fact that you feel the way you do. I’ve always lived life at full speed so it’s taken me a long long time to accept the fact that I am ill and it’s not actually my fault that I’m wiped out. I’m still hard on myself but I’m definitely getting better at looking after me rather than telling myself off…LOL…
I’ve learnt now though that fatigue isn’t something you can fight, but on the other hand I can’t (and don’t want to) give up my job yet either, so I’ve found shortcuts to do things both at home and work. I only do the absolute necessaries when I feel really bad and try to rest as much as I can inbetween. Again, it’s not a cure but it all helps. It takes time but you will get there and find a way that suits you best.
I have both afflictions: I have terrible fatigue a lot of the time AND I’m lazy! This has one excellent benefit: I don’t give myself a hard time for doing b all All joking aside (not that I was really), the trick is knowing the difference. Laziness doesn’t make you sleep. Laziness doesn’t make you so tired you feel sick, slur your words, walk like a drunk 90yo with a bad leg, make the room spin or your eyes hurt even to blink and make you want to sleep NOW, even if you’re in the middle of Tesco. And avoiding things that make you feel that way isn’t laziness either - it’s common sense! Thankfully, being naturally lazy, I am more than happy to adopt the avoidance tactic. It sounds like you are struggling to do the same - which is perfectly understandable as you clearly aren’t naturally lazy. So you need to apply to your common sense. You will be far more productive if you ask for help, work in smaller steps (don’t cut the elephant into chunks, cut it into tiny bite size pieces - and chew properly! ie take your time) and rest between steps. Also prioritise the important things in your life (eating is important, but dust is for drawing in). Fatigue cannot be “pushed through” - best to take a break and come back fighting(ish) than keep going and make it worse. Like Debbie, I am on modafinil and I can honestly say that it has transformed my life. Unfortunately it does not work for everyone plus it can be really hard to get because its not licensed for MS and there is a strict “on label only” warning applied in the UK. However, some GPs are willing to go against the rules and still prescribe it for new patients so it’s worth asking. The other med is amantadine. It is like modafinil in that it doesn’t work for everyone either unfortunately, but it is easy to get at least (with a diagnosis). The MS Trust and the MSS do booklets on fatigue - you might get some good tips in them. One of the main things that makes a difference is exercise funnily enough - so keeping fit will help. Most of all: give yourself a break (figuratively and literally :-)) - you are not lazy! Karen x
Thank you for the replies everyone. Feeling less lazy today, and very slightly more ‘regular tired’ rather than ‘can’t stand to be awake a minute longer’.
This helped me massively Rizzo. Before reading this I’d never really felt that I was that bad in terms of fatigue (and I could still be lots worse!), but seeing it laid out in such plain terms has made me realise that I’m genuinely not being lazy, and that it’s not normal to feel like that most days!
Thanks for the tips as well - asking for help is the one I’ll struggle to do most, though I am doing better at that. Already have ‘ignoring the housework’ down to a fine art (I live alone so it’s one thing I don’t have to feel guilty about). So I’m setting myself the achieveable goal for the next week - ask for help (or at least let someone know I’m struggling!) at least once. Only posting that because if it’s in writing I’ll feel I HAVE to do it!
All joking aside (not that I was really), the trick is knowing the difference. Laziness doesn’t make you sleep. Laziness doesn’t make you so tired you feel sick, slur your words, walk like a drunk 90yo with a bad leg, make the room spin or your eyes hurt even to blink and make you want to sleep NOW, even if you’re in the middle of Tesco. And avoiding things that make you feel that way isn’t laziness either - it’s common sense! Thankfully, being naturally lazy, I am more than happy to adopt the avoidance tactic. It sounds like you are struggling to do the same - which is perfectly understandable as you clearly aren’t naturally lazy. So you need to apply to your common sense. You will be far more productive if you ask for help, work in smaller steps (don’t cut the elephant into chunks, cut it into tiny bite size pieces - and chew properly! ie take your time) and rest between steps. Also prioritise the important things in your life (eating is important, but dust is for drawing in). Fatigue cannot be “pushed through” - best to take a break and come back fighting(ish) than keep going and make it worse. Like Debbie, I am on modafinil and I can honestly say that it has transformed my life. Unfortunately it does not work for everyone plus it can be really hard to get because its not licensed for MS and there is a strict “on label only” warning applied in the UK. However, some GPs are willing to go against the rules and still prescribe it for new patients so it’s worth asking. The other med is amantadine. It is like modafinil in that it doesn’t work for everyone either unfortunately, but it is easy to get at least (with a diagnosis). The MS Trust and the MSS do booklets on fatigue - you might get some good tips in them. One of the main things that makes a difference is exercise funnily enough - so keeping fit will help. Most of all: give yourself a break (figuratively and literally :-)) - you are not lazy! Karen x