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Transverse Myelitis: Lily's story
Life changed when I was 31 years old.
I had been feeling unwell for a few days and thought I was coming down with 'flu, but my GP was convinced it was just a chest infection, gave me a prescription for antibiotics and told me to drink flat coke which I did for a week, though I only remember the first three days of that week.
Admission to hospital
The days leading up to and the week after my admission to hospital are really just glimpses into what was going on. I couldn’t speak, see, walk or sit up. I just slept a lot and still remember very little. Obviously my initial diagnosis was way off the mark but thanks to my husband I ended up in hospital, it’s sad to say that he had tell the Doctor he would be needing his own ambulance if I wasn’t sorted out. He was told by the A & E Doctor that had I been left any longer my chances would have been small.On admission to hospital I was immediately catheterised, as I had not passed anything since the day before, and given an enema. I can't remember how long it had been since I'd opened my bowels. I had a lumbar puncture and was transferred to the Neurology ward in another hospital where I had an MRI and CT scan and another lumbar puncture. I was put on steroids and anti-virals and lots and lots of laxatives even though there really was no need.
Diagnosis
Diagnosis took some time. I was tested for Legionnaires, Guillain Barre Syndrome and Meningitis but eventually I was diagnosed with Encephalitis and Transverse Myelitis, caused by Influenza B.I had no control over my bladder and bowels and I was paralysed from the waist down, which meant for the most part I was trapped in my bed and had to be hoisted everywhere, and I was depressed. I had to be fed through a tube as I couldn’t eat but my eyesight, speech and writing were slowly improving. The staff there were fantastic.
After a month I was moved back to the original hospital as it was closer to home and it was decided that I just needed intensive physiotherapy but I developed a full leg deep vein thrombosis (DVT) and the physio was put back another couple of weeks. Strangely the DVT scared me more than anything else I’d gone through. I’d been having Heparin injections but they hadn’t done enough.
Three months after my admission I was assessed to see if I could go home, I was so worried that the Occupational Therapist would say no, I had to get out of hospital, I was at snapping point.
Discharge from hospital
I was discharged and had only one visit from the District Nurse who told me that despite the fact I was going to the loo every twenty minutes or so, not easy with a transfer board, I’d be OK, just a bit of catheter trauma.
I was so naïve, I wasn’t told anything when I left hospital and I had no support except from my fantastic husband and my wonderful Mum who is sadly is no longer here.
It was only when I confronted my Neurologist, a month after being discharged from hospital, about my bladder issues did I get to see a Urologist and I demanded to see a Colorectal Surgeon to sort out my bowels after a few very public accidents. The Neurologist seemed surprised I had not been referred before, but I had no idea what was going on, and who was supposed to refer me if not him? I suppose I could have asked my GP but I didn't know what to ask. I didn't know if the problems I was having were problems I was supposed to have.
I still have to intermittently self catheterise and manually evacuate my bowels, but it beats being housebound.
I take antispasmodics for my bladder, Loperamide and a prophylactic dose of antibiotics and am currently waiting to have Botox injections as I find the side effects from the antispasmodics difficult to cope with.
Thirteen years on
It’s been 13 years since my diagnosis and I can honestly say I feel that I have had to fight for just about everything.
I don’t want to be negative; dealing with problems as they arise myself and only visiting my GP as a last resort and made me feel more in control of my life - after all, no-one knows how you feel better than you.
I am luckier than most in that I’m mobile and can work but every day seems a struggle, but the good days are the very best days.
My advice to anyone who is diagnosed is to ask questions if you are able to, I wish I had. There is really no excuse for not keeping patients informed, it's vital; however it didn't appear to be a priority or at least it wasn't in my case. The not knowing causes anxiety and depression which only makes things worse, so ask as many questions as you can, then you can at least prepare yourself and your family for whatever happens when you get home.
Get hold of any available help if you need it; ask your GP what's available to you; if you need care, even in the short term, ask for it. And of course there are brilliant sites like this!
Further information
If you have any questions about transverse myelitis or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.
You may also find these links useful:
