What it’s really like to have a MS relapse

MS relapses can be devastating, life-altering events which, depending on severity, can result in a sudden and rapid increase in disability.  One day you could be going about life as normal and the next your life as you knew it is over, confined to the past forever, never to be reclaimed.   

I know this all too well as it happened to me following a life-changing relapse around two and a half years ago which led to my diagnosis.  As a result of my body deciding to attack itself I became disabled, leading to medical retirement and a life of many limitations.

what it's really like to have a MS relapse

It’s important to remember though that not all relapses have the same outcome, they can often be much milder and leave you relatively symptom free.  Yet who can forget that the possibility of a more devastating attack is still always there?

The potential physical implications of relapses are very far reaching and it would be impossible for me to provide personal insight into them all here, although fatigue and brain fog are the most common and I have written about my own experiences of them in detail before.  

I do, however, believe there are many thoughts and feelings that we probably all share when consumed by the shock and injustice of a relapse and actually getting them out in the open can only be a good thing.  So be assured that you’re not alone in what you’re going through, your fears are real and valid and there are people out there who understand, including myself!

Thoughts and feelings you will probably have when going through a relapse

Fear and confusion

‘(Creeping realisation and sense of horror) is that my arm/leg/eyesight/speech/(insert body part/function here) I’m losing control of?’

‘How bad will it get?’

‘How will I manage or be able to look after myself/others?’

‘What does this mean for me now?’

‘What will be left of me once this is over/how much will I recover?’

‘How much more can I take/how do I keep going?’

‘How will this impact on my relationship with others/my job if I don’t recover?  Will I become less significant to them?’

Anger and frustration

‘Why me?’

‘What have I done to deserve this?’

‘Why can no one help?’

‘When will this be over/please make this stop’

‘How is it possible to feel this awful?’

Hope

‘Maybe it’s not really a relapse after all, no one can seem to tell me it definitely is’

‘Maybe it won’t be too bad and I’ll recover really quickly’

‘If I try harder to ignore it it might go away’

Isolation and feeling misunderstood

‘No one understands what I’m going through’

‘(When trying to put on a brave face) How can you not see how scared/ill I really am?’

‘I know you’re trying to help but your suggestions show just how little you understand’

‘Why are you not here for me when I need you the most?’

‘I’m relapsing but the world just keeps on turning, I’m not really significant am I?’

Fatigue and brain fog induced muddled thoughts

‘What was I saying/doing/thinking?’

‘What were you saying/what do you mean?’

‘I can’t remember if I did that or not’

‘How am I supposed to be responding/what is the appropriate word/thought for this situation?’

‘Was there something I needed to remember now/for later?’

Sadness and grief

‘I’ve lost my independence’

‘Why didn’t I appreciate everything that I had before?’

‘I’ll never be able to do (insert action/activity here) again’

‘I’m upsetting my close family and friends’

Gratitude

‘Thank goodness for my friends/family helping me to get through this, I don’t know how I’d manage without them’

‘Life can change so much in an instant, I’ll never take anything for granted’

‘I’m lucky, it could be worse’

Guilt

‘What have I done wrong, have I brought this on myself?’

‘Why didn’t I do more to prevent it?’

‘The fact I’m getting stressed/scared/anxious is making my relapse worse’

‘Other people are worse off than me, I shouldn’t be feeling sorry for myself’

During a relapse we have so many conflicting thoughts and feelings yet most people have no idea that we’re battling with them!  Please don’t feel like you’re alone in them or that they aren’t important; I challenge anyone to completely keep it together when they feel like their life is falling apart around them.  You are allowed to feel these emotions and facing your fears is tough.

I’m sure there are more thoughts and feelings that I’ve forgotten to include so please let me know if you can think of anything you’d like me to add.  I’d love for this article to be a really useful resource, to support as many people as possible as they endure something no one should ever have to.

My own experiences and emotions

Facing my fears

The terrible reality of having a MS relapse is very fresh in my mind and not just because of the horrific, life-altering, relapse-filled introduction I had in 2015.  

I’ve had a rather unwelcome reminder more recently which I was totally unprepared for mentally.  My Multiple Sclerosis had lulled me into a false sense of security, with everything reassuringly trundling along like normal, then suddenly scary stuff started to happen to my body out of nowhere and all the fears I’d worked so hard to push aside rapidly consumed my every thought.  

I was faced with the question ‘am I having a relapse?’ although I really didn’t want to find out the answer, as though not admitting it was a possibility would somehow alter the reality of my situation!

It all began one evening around a week and a half ago.  My left arm started to feel tingly and hollow, like someone had given me a dead arm.  I often experience unusual nerve sensations which are usually short lived so I didn’t think anything of it at first until the next day when my arm still felt strange.  Since then my arms have alternated between feeling as heavy as concrete or as light as a feather, I’ve lost some of my fine motor skills and my handwriting has become more laboured.  Nerves have felt tingly or numb and cold or hot, as though my arms are covered in sunburn, all whilst battling crippling fatigue and a brain which feels like it’s taken a real battering.

Feeling confused

I’ve gone to bed every night wondering if the full extent of the relapse is yet to hit and how disabled I’m going to wake up in the morning, while not being entirely sure if I am actually having a relapse!

Confusion is definitely a huge part of what it’s really like to have a MS relapse!  Finding answers is hard as relapses can be so different.  Some of the best advice I’ve found though is from the MS Trust, the information they provide is probably the clearest you are going to get.

As luck would have it, I had a routine MRI last week which should highlight any new activity so my MS nurse has put a rush on the results and then we can take it from there if it turns out I am relapsing right now (I probably have 3 days of intravenous steroids to look forward to which are vile) .  I’ll keep you updated.

I wish anyone who has to get through the fear and uncertainty of a relapse all the very best and please remember you are not alone.  Feel free to email or message me on social media any time and I will be there as someone who truly understands!

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10 thoughts on “What it’s really like to have a MS relapse”

  • Hello Natalie,
    Very glad to hear that your MRI results are stable, wishing you better days ahead with your symptoms. I’ve only seen this article today, whilst I’m currently waiting for my own current relapse symptoms to subside. I haven’t been able to get out and about much with this one, which coincidentally enough began on the date you posted this article It’s always comforting to know you’re not the only one thinking and feeling the same. I can definitely relate to the above! It takes a fair amount of courage to open up about such experiences, and to share them with others. Looking forward to reading your future articles! Take care and all the best Xx

    • Thank you so much for getting in touch Sarah. I really hope your current relapse symptoms improve soon and it feels good knowing that sharing my experiences has helped you to feel less alone with yours.

  • Hi Natalie. How are you feeling now?
    Your questions in this post are as if you have extracted them from my mind.
    Shall I see you Monday? Speak then, gabs x

    • Hi Gabrielle, thanks for stopping by. I’m feeling a lot better now thank you and my MRI shows no relapse. At least I’m not the only one thinking so many jumbled thoughts! I hope you’ve had a good month? I’ll be in on Monday, it comes around so quickly doesn’t it? x

  • It’s great you’re sharing what you’re going through so other people with MS know they’re not alone and people without MS understand a little bit about what having MS and relapses are like. I can understand how the fear of a relapse coming is almost as bad as the relapse itself. Hopefully you get good news from the MRI!

    • Thanks Sarah! I just got my results back and my MRI is stable so that’s good news at least. My suspected relapse wasn’t a relapse and I’m so relieved 🙂

  • So sorry you’re suffering at the minute Natalie. The thoughts and feelings you share here are so true, and really capture how you feel when going through a relapse, or even a bad spell with your symptoms. It can feel really scary. I’ve definitely felt all of these things and sometimes it does feel strange how our emotions can be so conflicting as we try to battle through. I’ll keep my fingers crossed your results come back ok and wishing you better days ahead xx

  • This is such an eye-opening post for someone like me who doesn’t have MS, but who can still also ‘get’ some aspects of a relapse, some of the symptoms, some of the emotions. But to have all of that together with the uncertainty of knowing whether it’s a full relapse must be, well pretty damn traumatic to go through. You have shown such courage and strength in putting all of this together, especially right now. This will bring a lot of hope and comfort to other MS sufferers, so you should be very proud.

    Wishing you all the very best for your results (and the yucky IV steroids if it’s found they’re needed). I’ll be thinking of you. Please keep us updated if/when you can. I really do hope things are brighter for you soon, you are going through so much 🙁

    Please, please take care of yourself.  ♥
    Caz xx

    • Aw thank you Caz I appreciate it so much. Doing what I can when I’m not resting by distracting myself with my blog is really helping to keep me sane right now! I really hope that sharing my experiences helps other MS sufferers feel supported and better understood during a really difficult time in their lives. I’ll definitely keep you updated with how I get on! xx

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