Last reply 1 year ago
fear of relapse….??

last 2/3 weeks ive experienced what seems to be the start of a REALPSE ive had really bad signs of numbess and weakness in my legs and spreading up my left side of the body so as soon as possible got to the a&e and adviced home treatment of steroids and contiuing with teriflumaide. however, ms nurse called for update and other then my energy levels up and down days, everything else is not quite the same, i try to stay postive on the outcome but one thing ive learnt its seems impossible to stay happy end of the day 🙁 the earliest appointment to see my neurologist is monday morning coming, christmas eve for new mri which is crazy considering i waited twice down a&e for over 10 hours, nevertheless i fear they have to change my drugs again and feel like going in circles dread that wait for the mri results all around this time of year just makes it feel worse but i carry on just wanted a few tips on how to stay postive? how to explain this clearer to my partner? what should i when i want to do things and carnt and telling people is so much harder when i cannot hide it?? getting so frascrated with myself and feel the guilt/ im sorry alll the time settling in my speech pattern and feel letting people down once again any advice much appericated!!!! larissa x x x

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1 year ago

Hi Larissa

A big virtual hug and I’m sorry you have another relapse. It sucks big time.

There are two things that I have promised myself to implement when my next relapse comes and I know it won’t be easy to stick to them for exactly the reasons you describe (letting people down etc.):

Press the pause button early and firmly, i.e. go off sick and don’t try to be a hero by pushing through work wise. Instead, go along with your body and accept that this is a relapse, your body tells you to stop and you need to heal.

As simple and as hard as accepting this is happening and it needs to be sat out.

Relatedly, people understand actions better than words. Our partners, family, friends and colleagues will never understand we are ill if we try to push through and are covering up the relapse. I grew up with sick parents and whenever my mum felt ill she’d get snappish and angry because she was overwhelmed and felt unsupported. But she didn’t stop and behave ill and for years nobody really understood she was feeling unwell.

Nobody will understand an invisible illness if our behaviour doesn’t match how we say we’re feeling. The two things above go hand in hand.

Consequently, take sick leave if you possibly can or ask work to allow for adjustments. If you’re not in employment maybe you can take ‘sick leave’ in other ways, e.g. sound the alarm so grannies get on granny duty with the kids or ask uni for deadline extensions on assignments, etc. And then: Sofa, tea, box set, etc. until you feel better.

Get better soon, the hardest bit for the above is accepting you are ill for now. Once you accept that this is what is happening and act accordingly, everyone else will be able to accept more easily, too. Added bonus (if there is such a thing with MS): You’ll probably be back on your feet more quickly instead of lingering in the lonely grey area.

Get well soon, poppy x

1 year ago

@larissajathomas , I can sense the desperation and frustration in your words.

You need to put yourself first at this time. So, rather than worrying about letting people down, do as @poppy12 says, put out the white flag, get your feet up and chill out.

This is a stressful time of year, with a lot of expectations. Just don’t beat yourself up and make things worse.

Just get your partner to hug you and not let go.

1 year ago

Hi @larissajathomas have you been for a urine test? Whenever I’m having or feel like I’m having a relapse my MS nurse always sends me for a test as urinary infections & MS don’t make c well. The guys have given really good advice above. It’s tough to stay positive when you’re relapsing especially as it’s a constant, in your face, reminder of having MS. That said the relapse won’t last forever & try to focus on the fact it’ll be over when it’s over & hopefully that won’t be too long. I hope you get well really, REALLY soon 😏


1 year ago

I’m so sorry you’re having a hard time. I’ve only ever had one relapse but I certainly remember feeling very hopeless. If there’s any way you could do something you really enjoy might help divert your attention, and certainly extra attention from you partner would be wonderful. If you have an animal, they can be a great diversion. (I used to have a cat I nicknamed “therapy cat” because he seemed to sense when I wqas upset or needed something uncomplicated as well as some loving attention.) Favorite movies? Basically anything you are able to do ti indulge yourself. I know powerless having a relapsemakes you feel, so I suggest any diversions you can fine. Also sending you a big hug anf I agree with the advice from [email protected] and [email protected] Good luck!

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