Diagnosis: Acute Disseminated Encephalomyelitis
In August 2014, I was 34 years old and away for a weekend in Somerset, UK with my two sons, a friend and her daughter. A very simple walk in the countryside was the event that changed my life forever. On our walk, I sustained a tick bite. I hadn’t noticed it at the time but saw the bite mark and felt the itching later that evening. The next day, I developed a headache, but I didn’t think anything of it. The day after, the headache was worsening and no medications I took alleviated the pain. The following day, we drove home. I don’t remember that drive at all, but my eldest son tells me I spent the whole journey shouting and swearing at him and my younger son. This was completely out of character for me! By the time we reached home, I had to go straight to bed and call my mum round to watch the kids. When she arrived, I was asleep. She tried to wake me later that evening to see what the kids should be having for dinner. She couldn’t rouse me. When I did start to wake up finally, she said I was slurring my speech and she couldn’t understand what I was trying to say. She called the local general practitioner (GP) surgery, and my doctor rushed round to my house within 15 minutes and then called the ambulance. She told my mother that she thought it seemed like I had meningitis, but for some reason my symptoms weren’t adding up. She needed to get me to the accident and emergency department (A&E) urgently.
Within ten minutes, I was taken in an ambulance to Hospital. Soon after arriving, I stopped being able to breathe for myself and I was put onto a respirator. I was taken for an MRI that evening. I was incorrectly diagnosed with Viral Encephalitis. Although all my three lumbar punctures proved negative for HSV, they still insisted to my family that’s what had caused my Encephalitis. My friend who’d been away with me for the weekend told them I’d been bitten by a tick, but they said it was unrelated. That was a shame as that’s what turned out, in the end, to have instigated my ADEM attack.
I was comatose for three weeks. I then was completely paralysed when I woke up. It was then they realised I had spinal cord involvement, and I had a spinal MRI which confirmed a diagnosis of ADEM. That was on day 28 of my admission.
They then started IV steroids, and I gradually regained movement and feeling over the next six months, four of which was as an inpatient. I’ve had lots of physical rehabilitation but am still left with significant disabilities and a lot of residual effects of the lesions in the brain and spine and the myelin damage I sustained. I can’t do anything quickly. I can’t run or jump. I can only walk short distances and rely on crutches and a wheelchair as my balance is significantly impaired, as is my memory and many other things. The list is very long!
The best thing I’ve found since this illness is now I have the ability to help others. My research of alternative medicines and treatments has allowed myself and many of the friends I’ve made with brain injuries to get off of the vast array of prescription medications we used to take. I feel like the knowledge I’ve gained is really helping others. I’ve even been able to help others with applications for Personal Independence Payment (PIP) and Disability Living Allowance (DLA). It gives my life some meaning again.
I’ve now learnt to manage my fatigue very well, and I’m able to make others aware of the allowances they should be making for me. I’ve found my voice. I’m starting to feel empowered again. Being involved with various organisations such as the Transverse Myelitis Society here in the UK and also Headway (a UK-based brain injury charity), has given me a new purpose. It’s given me a bit of life back again. I get involved again. I socialise again in groups of people who understand me and my situation. It’s very comforting to know you’re not alone.
If I can give any advice to people who are newly diagnosed or family members and friends of those with a diagnosis? Get out there. Get online. Do research. Reach out to organisations that can help and provide advice and information on how you can tackle the issues you’re facing.
The Encephalitis Society, The Brain and Spine Foundation, The Siegel Rare Neuroimmune Association and Society…they’re all there waiting to help and support you through it all. Also, social media, like Facebook groups and YouTube videos, were a blessing to me. A world is waiting that understands you. You’re NOT alone!
Louise has recently been made Chair of the Transverse Myelitis Society Dorset Support Group!
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