Last reply 7 months ago
The guilt!

So it’s past 12 and I’ve just managed to surface and get myself a drink. I feel heavy, tired and unbalanced. This is one of my tired days. They come every few weeks and at 6.30am when my alarm goes off I just know I have to call in sick at work. It makes me feel so guilty. I know I need to rest and recuperate but my brain just tries to tell me I’m a lazy person. Before I was diagnosed I thought that everyone was tired all the time and we just battled on through until the weekends. But now I know otherwise. But some days I feel like I just don’t deserve a job… what’s the point in being employed if I can’t turn up! I feel like a fraud. Anyone else ever feel the same?

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bluebeard67
8 months ago

Have had those days. One thing I absolutely detest is when I mentioned fatigue to my Sergeant his response was, sure everyone gets tired!! MS fatigue is NOT tired people it’s much much worse, every limb is heavy, your mind is weak even your fingers are hard to use at times.

Stay strong 💪


amyb
8 months ago

Thanks @bluebeard67
You’re right, I stumble around for a good few hours before I can even start thinking about what tasks I need to do.
It all just makes me feel like a rubbish human!


bluebeard67
8 months ago

You are not a rubbish human you are a superhero fighting MS I see you are not on treatment, is that a choice? I’m on copaxone daily injection since dx in July 2013 & am doing well. Might be a while before reply, am heading to gym.

Stay strong 💪 attitude is everything by conor Devine is a book that changed my outlook. He has MS and haddone3+ iron man comps SINCE diagnosis


amyb
8 months ago

It’s not my choice, no. I was diagnosed 1 year ago, was referred to an ms nurse who was retired and never received my 6 month Neuro follow up. I fought all year to try and get things sorted and then in December I finally met with the right ms nurse. She has referred me to a different Neuro who is actually an ms specialist but I’m at the bottom of another waiting list again. So it’s been a whole year of waiting and chasing up and it looks to be another year of the same!
Enjoy the gym! I usually enjoy walking and climbing, I did the 3 peaks challenge last year! Hopefully I will find some energy from somewhere again 🙂 thanks for the recommendation


strictlysoca
8 months ago

You have had a difficult time of it but it seems to be getting sorted. Hope you are seen soonest It’s hard to distract ourselves from the guilt of being knocked down by MS when we think that people might disbelieve us. Would you think badly of a colleague? Compassion is useful I find. Most of the time you are at work and I am sure you are doing a good job

I’ve been knocked down by a cold so I’m off sick as hello MS symptoms due to the virus. Trying not to stress about it but in the back of my mind I have to deal with those negative thoughts about fraud as I can’t soldier on like others.

Wishing you better


nutshell88
8 months ago

When I was a child I used to feel tied legs pain in them sometime now MS explained it.
Regarding to guilty for not being as active as u r supposed to.
I’m sure you read more than once that failing once is a sign of success it means u have tried and worked and u will learn from ur mistake. I say those phrases are more suitable for us MS people than normal prople but we do indeed try and fail never because of laziness but because of our illness.
If we ms people feel guilty for failing and take a sick leave when we need to then how would thousands of healthy people feel.

What I do personsly. Is never tell anyone in my job I have MS no body notices.
One lady once notice my walking is a bit different and that she suspects something due to nerves i told her its true snd please dont tell anyone. Snd thays it
It eases the pressure in my mind other people cant help not think of us differently if they knew we have MS, diabetes, or even flu its human nature.
Regarding to ur foot do physio therapy or ask ur neuro it might need steroids to recover

I hope you get well soon.

Regards
Reem


nutshell88
8 months ago

Pardon, about mentioning your foot its
2 am im up all night and my brain made a mojito cocktail of 2 threads 🌗


spangle
8 months ago

Oh dear, sounds like you’re having a bit of a rough time of it at the moment.
It’s always tricky with work, my tactic was to bombard them with information. MS Society has lots of free publications you can order from their site. I found when I explained fatigue my employer just wouldn’t get it, but after giving them a booklet to read they now realise that this is a symptom of MS.

Hope you feel better soon!


cameron
7 months ago

I don’t know your circumstances but the fact that you’re not yet on treatment is (IMO) very significant. Things may well start looking brighter once you’re on a DMT, so it may be worth your while to research them before your neuro appointment. Best wishes, x

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