Hi everyone - I just wondered if anyone ever feels guilty for feeling tired, or unsure as to whether the tiredness is because of a lack of resilience as opposed to MS? I am working from home, five days a week, in quite a stressful role. I was diagnosed at the end of 2019 following two attacks in quick succession.
Thankfully, I don’t really have any symptoms these days (I still don’t know if the tingling sensation is MS or whether everybody gets this). Mobility fine. Brain functions well enough. However, feeling very tired after a long year of work and birth of first child. Haven’t taken much holiday. Getting increasingly emotional.
Currently, my tiredness is making me feel quite sad. I perceive others coping with the pressure well, whereas I want to just hide and cry. When I ask myself whether I am genuinely tired, or just weak, I decide it’s the latter. Further, I never allow myself to say it’s MS because day-to-day I am able to generally function quite well. As such, finding it hard to ever give myself the benefit of the doubt in case I’m just not a very tough cookie.
Does anybody else wrestle with this issue? I really want to say it’s the MS that makes me feel more tired, and that I might be at a bit of a disadvantage, but I am not brave enough to say so in case it isn’t true.
The pandemic and working from home is enough on it’s own to be exhausting and depressing. Having a baby, particularly without the social support normally available to new parents, is also enough on it’s own to be exhausting and make you feel sad. A diagnosis of MS at the end of 2019, just before the pandemic hit and put everything on hold, didn’t allow you adequate time to process this new information and work out how you feel about it - that can take ages for most of us even in normal circumstances. Any one of those things are individually enough to test your endurance and push your coping systems out of the comfort zone. You have experienced ALL of them, bang, bang, bang one after the other.
You are amazing, you are not weak, just maybe tired from being strong for too long!
I think some annual leave is in order as soon as you can. Maybe contact your MS team or GP to see if there is any local support you can tap into. Maybe see if you can work reduced hours, or 4 days a week? (if finances allow) Remember your employer has a duty to make adjustments for you now you have MS.
Oh my goodness, you put so well something that many of us - me included - struggle with.
I have had MS for 20+ years now and retired from paid work more than a decade ago, but in the early days just tried to power through it, telling myself that if I wasn’t actually relapsing then there was obviously nothing amiss MS-wise and no excuse for not cracking on at work like a normal person. It was sad experience rather than anything else that taught me that the MS disease process is stealthy and insidious and has ways of sapping your energy and your drive and your creativity and your cognitive bandwidth and your joie de vivre and resilience in ways that do not always correlate well with frank disease activity of the sort that makes a hand not work, or a leg go numb.
In other words, I think you need to cut yourself a bit of slack here. For many of us, even in the early days, life with MS isn’t the same as life without MS, even when you’re between relapses (and long may you remain so). Some people are fine and seem to manage as if there’s nothing much the matter. But many of us find that becomes increasingly difficult, and it doesn’t help when we blame ourselves for what the disease is doing. So please be kind to yourself. Admitting that MS is sapping your energy and darkening your mood, whether directly or indirectly, is not the same as giving in to it. Most of us find we heed to reach some sort of uneasy accommodation with MS, constantly renegotiated, that allows us to live as well as we can within constraints that are easier to easy to deal with recognised than denied. Over time that can involve difficult decisions about life balance. Please remember that none of this - none of it - is your fault.
It took me 40 years to get a diagnosis, and I spent many days knowing inside that something was horribly wrong but feeling like a failure because I had so many times when it was a struggle just to get out of bed. I was finally able to get a diagnosis and quit work towards the end of 2019. It’s been nothing but a learning experience ever since as I’m gradually teaching myself that it’s okay to be tired, okay to let the housework go. Resting at regular intervals, and sometimes taking an afternoon nap, is an actual medical need for me now. I wouldn’t not put a bandage on a bleeding wound or not go to the ER for a compound fracture, so I’ve finally accepted that my priority at this point in time is doing whatever it takes to stay rested and functional.
You’re dealing with a lot right now. Like the others have said, give yourself a break. Take a vacation if you can. Reduce your work hours if that’s possible. But make a point of taking the time to take care of yourself, whatever it takes.
As everyone has said - give yourself a break! even without MS, being a new mum is difficult, babies dont come with an information book and its hard work trying to understand what they want and need. Thats without the pandemic and work and MS. Take time and dont be so hard on yourself
That’s the problem, I think - I don’t feel floored. Just…slow. Lethargic. Attention shot. Yet my peers seem to cope well enough, and yet I don’t feel “MS”-ey…
It’s reassuring (though of course sad) to hear you have experienced similar, Alison. It’s like imposter syndrome, only I want to have MS just this once so I can point to it and say “here is the reason you should take some time for yourself”. However, I fear I can’t because, in my head, I’m not currently “Kenneth who has MS”. The renegotiation point is a powerful one - it feels like a bum deal, but not costing me anything yet…
‘KJE1988’, this is ‘JJK1963’… Let me explain…, I’m a dutchman, who came over to the UK in 1995, and I’m married to a most wonderful english lady… We have had all the possible ‘shit’ (is dutch for sh*t…) that you can imagine… (he said…, of course there’s always worse!.., but which does not help!!) BUT my wife and I are still sharing a glass of wine in the evening, even I still feel embarrassed when my wonderful wife takes in ‘the other bottle’ at the same time, just in case the new extension at the back of the house also means that the new bathroom is further away than it used to be…
Bla bla bla…, I’m just trying to tell you that ‘we have all been there’ and simply do not know how to comfort you at this very moment…, other than just acknowledging your message… I hope you have a wonderful partner as I have, and even if this is not the case, just keep on communicating as you do now! Take care!
Hmm, yes, you’re quite right: the fix you’re in is indeed some kind of nightmare inversion of ‘imposter syndrome’, isn’t it? Having suffered from both sorts of that in the past, I’ll probably be having nightmares myself tonight!
Can I just say well done you for the birth of your baby and continuing to work with little time off. MS or not anybody would be feeling tired and in need of a good rest. Give yourself a pat on the back and whatever treat makes you happy.
I see you are called Kenneth - so a Dad I presume rather than a Mum! You’ll still get the disturbed nights though, with a young baby.
Minnie Mouse gave some very sensible advice.
I can understand that you don’t want to label yourself yet as ‘Kenneth who has MS’, but it is important that you look after your health, whether you have a label or not. Tiredness for more than a short period is not good for anyone whether they have MS or not. Tiredness, whatever the cause, is tiredness, so listen to your body, and work with it, rather than trying to push on through regardless.
I’ve noticed that many of my colleagues are not coping that well, are feeling tired, down, feel they need a break. They don’t have MS, or a young baby either! Most don’t have any obvious excuse. The uncertainty of Covid is having a detrimental effect on many - routines altered, plans forever on hold, and many holding onto holiday leave as they want to eventually use it to go on holiday somewhere away from home, so have had fewer breaks this last year. We’re allowed to talk about it, where I work, so though they may appear cheerful, coping well, it turns out that underneath many are currently struggling.
I’m currently off work with fatigue. I had to get a sick note from my GP, and it was quite obvious from the phone conversation that they are now so accustomed to the fact that so many people are feeling low, lacking in energy, that it seems to be the first thing they ask about - it is now a normal part of their consultation, and they seem very comfortable and matter-of-fact about raising it.
Goodness you are FAR from weak. I think a lot people without ms really don’t understand the fatigue a lot of us suffer from. We look well from the outside and they can’t see why we’re not functioning at full capacity. Fatigue is debilitating. I have cried (privately) numerous times when I’m just so exhausted and just can’t carry on. I am now seeing/feeling the signs in my body when I start to get ‘tired’ and know when to slow down to try and stop the fatigue. Be kind to yourself, take a break if you can. Don’t worry about the housework, the gardening, pleasing other people… Enjoy your new baby, appreciate your partner and look after yourself. All the very best.
Carole x