Stage 1- In the pre-diagnosis phase, I was having relapses but didn't know what they were. My first one happened when I was 22; I was sent home from the Eye and Ear Hospital with some pills and an unclear prognosis. Post-pregnancy was a very difficult experience, I was absolutely exhausted. Having to stop working full-time was really upsetting too. I had been taking naps in my car during lunch and knew something was very wrong. I couldn't explain my uncharacteristic behaviour and letting people down was also tough. I also felt judged.
Stage 2- Fast forward to diagnosis (not really that fast because it took 14 years!). Aged 36 I was hospitalised because I lost power down the right-hand side of my body. My first MRI showed up multiple lesions. I was discharged after a week. Steroids helped the physical side. Mentally, I was still in shock and sinking in lava, my world collapsed. The kindness I was shown over this time helped me to safety. I will always remember these people.
Now we’re at Stage 3- I have experienced several relapses but have only been hospitalised once. Ironically, according to my MRI, no new activity occurred in my brain during this pseudo relapse. That's not what it felt like!
Enter ‘faking-well’ days and people telling me that I am playing the ‘MS Card’ (whatever). I had the relief of having a diagnosis but gained an unspoken fear of relapsing and being an MS moan.
Something that is rarely written about is how we might get ‘MS ghosted’. It happened to me after I was diagnosed; it seemed that some people just did not want to know about my relapses. Maybe my relapses bore them or it makes them uncomfortable, I don't know. What I do know is that it burns! My husband's family never mention my MS. I think that you have to accept these things and move on. If someone I know is acting out of character, I will ask them discretely if they are doing
okay. It's better than judging people and making unfair assumptions. At least I know I’ve tried to be there for them.
Thank you to MS Ireland for publishing this content on MS Relapses. I hope that it will help people better understand relapses and know what to expect. I still have ‘relapse anxiety’ when I have a lot on. I rarely admit to this as I fear exclusion, judgement, and prejudice. I keep a bag packed in case I need to stay in hospital and worry that my kids and cats will be looked after. Having an MS tribe and support network really helps. They just ‘get it’.
Read our information on relapses here
MS & Me blogger Willeke Van Eeckhoutte shares her relapse experiences here