How to continue working/functioning?

Everyday living
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Morning,

Not really sure if anyone will be able to help but any advice or experience people have would be great.

I love my job but it’s becoming almost impossible to continue. I have constant brain fog, forget my words and have to read the same sentence multiple times to even try and get the gist of it. I also have lots of spasms, rubbish sleep, fatigue…the list goes on!

I know this is all a cyclical thing, pain = bad sleeping, bad sleep = increased symptoms, increased symptoms = increased fatigue but how do I get on top of it so I can carry on working/living like a normal person in their late thirties?

I’ve tried lots of combos of drugs but essentially they leave me so spaced out I can’t work properly anyway, so now I just have methocarbamol and DF118’s for when the everything is really bad.

I work in communications (you’d never tell with how badly this post is written!) so basically desk bound at home during the day.

Life means I can’t really afford to cut down hours - and on top of that I don’t want to. I genuinely love what I do and find a sense of self/purpose in my work.

However I’m becoming so rubbish at it I’m not sure how much longer my employer will want me (they’re supportive and have made every reasonable adjustment they can but when a manager can’t manage and a communication person can’t communicate, they’re kind of in between a rock and a hard place).

On top of that, after trying my hardest at work all week I then have nothing left for the weekend. I end up doing very little family fun stuff and just try to recuperate from the week gone, to have some energy in the tank for the week ahead. I don’t want to live to work but it feels like that is what is happening right now.

Does anyone have any ideas on how I can get on top of this so I can still function/work 9-5? Two years ago (pre diagnosis) I couldn’t have guessed this is how my life would turn out.

Sorry, that was very long and self involved - thank you to anyone who got to the end.

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I hate to say it, but you may have reached the point when you can’t keep compensating for your MS any more. I know that’s not what you wanted to hear, but it’s how this terrible disease gets to us.

It’s not like an illness or an injury, it’s a relentless, inexorable worsening albeit slower for some than others. 5 years ago I was normal, 3 years ago I resigned from a job and set up on my own, working part-time from home and building in 2-3 daytime yoga sessions a week into my routine. Earlier this year I closed my business (unsafe to walk around building sites…) and have been unemployed. Actually I have a 2nd interview for a home-based desk job later this week. It’s flexible and I’ll earn maybe 25% of previous peak earnings. At my age & savings, it gives me a long glide path into retirement.

Without wishing to delve into your finances, you may need to review and restructure, talk with family and employer. Also look at benefits such as PIP if you’re not getting it already. Forget Lifestyle: LIFE matters. Reading through your account, you’ve done an amazing job keeping things on an even keel for this long, so don’t be hard on yourself, don’t feel guilty.

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Hello sweetheart.
I know love…it really is the pits when MS takes over just about everything in your life.

I was the same as you…had what I thought was the perfect job. But my progression was quick…in a wheelchair within 2 years.

I’m sorry, but having been where you are now, I cant come up with a good answer for you.

Some MSers do find DMDs which stave off worsening symptoms and continue to work and have a life.

Sounds like it’s time for you to do some hard thinking and decide the way forward. Have you got PIP? You know you can get this whilst working?

If you do have to take early retirement, (I was 47 when I did it) do let your employers finish you to get the best payout.

Boudsx

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Hi, really sorry you are having a hard time, sorry can’t help with work but for your spasms do you take magnesium tablets or the spray, for me it really helps for spasms especially the spray,also since I went gluten free my fatigue is so much better but i don’t work! probably that’s why hope you find a way to make it easier stress is the worse thing for ms

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REALLY important point, this. Don’t quit, get invalided out.

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I involuntarily winced with recognition when you described how things are for you at work: there is nothing all that wrong with your communication skills, alas!

There are no easy answers here. My personal experience is that even with the most supportive employer in the world, there comes a time when you just run out of road. You’ve done your best they’ve done their best but there’s a job to be done and you can just no longer do it. These things don’t wait until it’s convenient until you can afford it: they just happen. If you find that you reach that point sometime soon it will not be your fault and you will find a way to cope. I am sorry that is very cold comfort.

One thing I would say is that a very effective disease modifying drug can really help. It is not unusual for RRMS to be particularly aggressive in the early years. If you are on one of the really powerful drugs that stops MS in its tracks for a bit (Tysabri for instance) that can make a real difference across a full range of functions, cognitive and physical. It won’t hold things back forever, but it can help a person stay afloat for a bit. If you are not yet on disease modifying therapy that is working for you, there might be some scope there to buy yourself a bit of time.

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Hi

Firstly, I think your post is perfectly well written :slight_smile:
Secondly, have you heard of Access to Work? It’s a DWP thing to help people with disabilities to stay in work, suggesting any adaptations or anything else that may help, and can even provide funding

Also, do you claim PIP? It sounds like you could be eligible. And if you do get it, you could be able to claim the disability element of Working Tax Credit. This means you could afford to reduce your hours.

Hope some of that helps

Dan

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@wellthisisfun Oh I can so relate to what you’re going through! Work was my life as well, until I reached a point where I just couldn’t function anymore. I would love to go back out to work tomorrow if I could, but realistically I don’t know if it’s possible.

What about asking if you could reduce to part time, would that be an option?

I hope you can find a solution that works for you.

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The only possible problem I can see with going part time depends on whether you’re in a final salary pension scheme. You could find it works against you. So I’d suggest if that’s the case you get some good (impartial) advice.

Sue

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I can’t really comment much on this, because the legal ramifications are so different in England than the US, but I do know that I made a major mistake in changing jobs several times in an attempt to find something that I could still do while not admitting that I had become disabled.

I believe that I made my overall health worse by pushing myself too long. And then I made the mistake of just quitting my last job. I should have finished using my available sick leave and then let them fire me so that I could collect Unemployment benefits. As it was, I became dependent on my meager savings heavily supplemented by my mother, and I’m still digging myself out of that hole.

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Different country, different rules, same shlt for the workers.

Such a shame for you NM. Similar things happen in the uk :uk: / :us:!!

The best thing is always to get advice from people / organisations who know the rules.

Sue

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Be wary, in the UK at least IHR is not guaranteed, employers have other options.

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I think your post was well said and spot on. I totally agree with you about trying to conserve enrgy etc. My MS has really stepped up a gear and I have been off sick 3 times this year, something totally unusual for me, the only other time I was absent was when I had breast cancer.
I do understand that the council may come to have a look at me and that is fine as I have nothing to hide.
This time has been the scariest, 3 Thursdays ago came home from work with a slight sore throat, went off to bed and during the night needed the loo but my right leg just woul not work. I had a bad fall, hubby got me sorted and the next day GP/ MS nurse were brilliant, chest infectionand antibiotics for the next 2 weeks but at the weekend I ended up in hospital as my infection markers were too high and temp even with paracetamol was 38.5.
Sorry for the rabble but I really am feeling a lot stronger with the antibiotics finishing today and really thought I would attempt work next week however my MS nurse said absolutely not, she says it was and possibly still a severe
chest infection and would not advise work for a few weeks.
I totally undeerstand if the council need to let me go but I hope against all hope this does not happen and that I will be fit enough for work.
MS really is a bu…
I hope things settle and know that there will be a way to resolve things.
All the best
Maryx

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I honestly thought it was me writing this post! I work in communications, have a young family and feel that my energy for family fun time has gone on work!

I’ve recently been off work for a couple of months with my MS, one of the issuing being brain fog! I couldn’t remember anything or think for myself! I had an occupational health review who recommended 5/10 minute break per hour. My consultant has also upped my gabapentin which helps with the legs in an evening/night time (I only take it in the evening as I didn’t want to feel groggy in the day)

I’ve just been to see a neuro physio for help with one of my legs and I’ve also been referred to an Neuropsychologist who will do some tests to see which parts of my brain are working more than others so I can play to my strengths rather than my weaknesses. I’m told the wait list is long, and I’ve only been out on it recently but maybe see if your consultant would be willing to refer you too?

Sending hugs, I get what your going through. Xxx

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A week on from your original post, are you feeling any differently? It can make the world of difference just to open up to folks about your predicament. Have you stopped apologising for being ill? That sense of guilt and foreboding is so draining and you’re better than that, you really are!

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I am getting there now, the infection is certainly going actually probably gone I think.
I was due my tysabri on Monday but because I was still on antibiotics and a bit chesty the doctor put it off until tomorrow as my antibiotics finished last night.
There is a definite wee change in me so I will see how work is when I go back but really hope to continue doing my hours just now.
Thanks again for always being there.
Mary x

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Hey I really feel you! I have just quit a job I started in November. I used to be a PA for 10 years and was diagnosed in June 2020 and I was finding I was having to gradually decrease what I did in my role.

I left my job as secretary in november and started the new one which was administration. However it turns out there are about a million systems and a huge range of different types of work, of which is just no good for my cog fog! I had a mental breakdown on Monday and again today. It was the last straw when my new boss asked me to make up 23 minutes for my neuro physio appointment that ran over this morning :frowning:

I just feel so unsupported and actually terrified to tell them when I have appointments etc so i just decided my health is just not up to it right now.

I hope since you have posted this you have had some good advice and a good think about what you want to do. Love and light x

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Sorry to hear that, but I think you are probably better off out of the current place. A company with a poor attitude like that will just damage your health. There are good ones out there so hopefully you will find one of those in due course, with the type of work that keeps you interested but not over-pressured, and at a pace that suits your health.

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Hello Robson

Welcome to the forum. So sorry you’re facing such a lousy working environment. It’s horrible when you reach a point with MS where you need to make adjustments to your working life. Then to find you now have an unsupportive and unsympathetic employer is the pits.

Did you declare your MS before you started your new job? If not, you probably don’t have a leg to stand on (sorry that sounds wrong when we’re talking about MS!) If you did make it clear before starting that you have MS, your employer should make adjustments for you.

Perhaps you could get some employment advice from the CAB? I’d suggest your employers HR department, but you should keep in mind that you’re a new employee and the HR team will perhaps be protecting the company rather than you!

Obviously this may have come too late as you’ve probably already told your new employer to (metaphorically at least) ‘stick their lousy job’, but perhaps you’ll be happier without them and the job.

Sue

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Hi Robson, what a rotten employer you have.

Feel for you.

Boudsxx

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