My Diagnosis and Story So Far
I’m completely new to this! Many years I’ve read blogs and forums for many many things and I’ve always envied the people behind stories, but parts of me think, “How can these people want to share their stories so openly?” But now I understand why, and I am now indeed one of those people who thinks, “Right! Get your story heard because if you don’t open up, you’ll blow up!”
So here goes…
Me in a nutshell
I’m 24, and a mother to 3 beautiful boys – my eldest is 6, my middle boy is 2, and my baby just 5 months old! I have a wonderful partner Andy and an incredible family! I lived a wonderful normal life full of ups, downs… everything a normal young mum goes through!
I’ve always worked in the healthcare sector, dipping my toes in many jobs within the NHS and I adored my latest job as a laboratory tech at a wonderful major trauma hospital planning to start my biomedical scientist degree!
So that’s me in a nutshell. Here goes…
Intense pins and needles
We went to a brilliant Halloween day out as a family. I’ve always been so festive and loved all the run up through autumn to Christmas and it’s always been so important to me to make these occasions special for my boys! We had a brilliant day, but I remember it being extremely cold! When we got home I had the most intense pins and needles in my feet but I put it down to the weather! As the days went on the numbness rose into my knees and into my thighs! So I thought maybe it’s time to get it checked out at my local a&e.
Guillain Barre syndrome
Whilst I was there it was clear to the doctor examining me my legs were significantly weak and I needed to be admitted for further tests!
It was all such a rush and as the day went on the numbness was spreading higher and higher! Within hours I could no longer walk! Straight away the neurologist presumed a condition called Guillain Barre syndrome, an illness that usually stems from a recent bug or infection! I had a lumbar puncture and it came back confirming GBS. My oxygen levels started to drop and my heart rate started to race! I was sent straight to the intensive care unit in preparation for intubation! But thankfully my symptoms stopped there! They didn’t get worse or better! And this led the Drs to second guess GBS! My reflexes were heightened rather than being non existent! But without another diagnosis the Drs proceeded to treat me for GBS with a treatment called immunoglobulins!
After 5 days in the intensive care unit, they decided it was time for an MRI! What an awful experience! Laying for 45 minutes on my back on a hard board with a pounding headache, unable to move with loud bangings all around me!
An hour after I arrived back onto the unit, they came to tell me I could now go to a general ward and I thought BRILLIANT!!! I was so excited and although the wonderful nurses on ICU allowed my children to visit I could not wait to go to a general ward and think about going home!
But that’s when my world came crashing down.
Something wrong with my brain
The following morning on the stroke ward, the stroke consultant came to see me. I asked him about my MRI results and his exact words were, “You don’t have a brain tumor, and you haven’t had a stroke. You don’t have GBS, but there are changes to your brain.” I was so so terrified as he stopped there and told me no more, as he said it wasn’t his speciality and the neurologist would see me shortly!
I entered the ward thinking, “BRILLIANT I can start to think about going home,” and woke up the following morning to the news I had something wrong with my brain!!! My emotions were everywhere!
But thankfully, the neurologist came within the hour and was followed into the room by a fellow doctor and a nurse. I knew instantly… it’s bad news.
I could not believe it. My world spun for a moment and I didn’t know what to say, what to ask? Who to call?!
A few physiotherapy visits and I was allowed home… But I left in a wheelchair, and arrived to a home that wasn’t my home anymore in the sense my once cozy living room had a huge hospital bed sitting in there, a commode, a stand aid. I was heartbroken.
And I still am.
Grieving for the old me
I’m not sure where I’m going with my MS future, but so far I’ve found it so hard to find out any positives.
I’m 24 and currently in a wheelchair. This isn’t the life I wanted. I want to run around with my children. I want to walk down the aisle with my partner. I want to walk down the beach when I retire.
But I guess MS is just that… A life of uncertainty. An absolute d%*k of a disease that makes me want to scream on a daily basis.
And most of all, I’m grieving for the old me. My old relationship. The way I used to “mum.”