My Story
*LONG WINDED POST IM AFRAID *
It's been 7 years since i was diagnosed with Fibromyalgia. I spent the first few months after that diagnosis on such strong painkillers, I was almost constantly nauseous and I struggled to get out of bed most days. I became depressed, because i felt like i couldnt do all the things i wanted to do anymore and being in bed all the time was going to be the new norm, but eventually with a lot of trial and error, changes in meds, learning my triggers etc, I found a way to manage.
I still had bad days and flare ups, but it wasn't as bed once I had learnt how to balance things.
December 2020, I was diagnosed with optic neuritis, I developed pain behind my eye a few days after a fall, and I though maybe it was because I had hit the floor with such force.. but it turned out it was unrelated. Over the next 2 weeks, I started to lose the vision in my left eye, first things were blurry and eventually all I could see from my left was a grey fog (i also ended up rocking an eye patch).. but eventually my vision started to come back. From start to finish, this lasted around a month. During this process I was sent for CT scans, blood tests, eye tests and MRI scans. Along with my optic neuritis, the MRI showed a lesion on my brain... This lead to a diagnosis of Clinically Isolated Syndrome. Next up was a lumbar puncture and biannual MRI scans to make sure I didn't develop anymore lesions.
I continued to have various symptoms, most of which I assumed was the fibromyalgia, so didn't really feel I needed to report them to my neuro team.
Then in June of 2023, I found out I was pregnant. It turned our to be one hell of a roller coaster ride. This also meant that my biannual MRI scans would have to wait until after baby arrived. In November, the midwife noticed my blood pressure had started to creep up. This resulted in multiple trips to the hospital, week long stays and a cocktail of tablets to try and keep it under control. This continued to be the case until December, on boxing day I was admitted to hospital again. This was when the doctors decided they would have to bring Maeve early, but they wanted to leave it for as long as possible to give her the best chance, so that meant me staying in hospital, for 24/7 monitoring. Then 6/1/24, the time came for Maeve to make her appearance 10 weeks early... we spent 32 days in NICU/SCBU before we came home. Maeve settled in well at home and she has continued to thrive since.
In February, it was time for another MRI... But I didn't receive the results till recently. Which leads me to now... The MRI showed I had developed more lesions, this was enough for the consultant to diagnose me with Multiple Sclerosis.
It's taken me a while to process. I have probably been through every emotion imaginable. I've laughed, I've cried, I've greaved for a life I felt was gone.. but now I have come to terms with it. I've realised MS isn't as scary as it sounds. I have options and a great team to support me with that.
Last week I talked through my options with the consultant, and yesterday I made a decision about my treatment. I am feeling positive about it and I am glad that we have the ball rolling.
Am I scared? Hell yes, coz I've still got a long way to go.. but I have a great support system and a loving fiancé who has been there for me every step of the way, so I know everything will be OK.
I’m sorry it has been such a hard road but it’s wonderful that you have your fiancé to support you & that baby Maeve is thriving. Wishing you everything good and sending best wishes
wishing you all the best!