"How are you today, are you feeling any better?"It was nice that people cared and I often replied something vague but positive.
"I'm not feeling as bad as I was, thanks for asking"Lately, not many people ask. Well, it's been eight weeks, surely I must be better by now?
When I was in hospital and told what was wrong with I googled it as soon as I could. Lying on my back with only one arm working and on my mobile which was deciding to give up on me, one week before the end of my contract.
Transverse meaning the direction, in this case across the spine.
Myelitis meaning the effect on the myelin which is is the coating of the spinal cord.
My nerves are damaged.
I carried on to read that recovery could be two to eight weeks. I was horrified, how could I be like this for two weeks let alone eight.
I later learnt that recovery could be up to years, and maybe never at all. Patients fall into three categories, some recover, some recover partially, some don't recover at all.
It's rare, so rare that there really are no positive answers. I've spoken with other people with the condition in the UK and USA. Stories are all different. Those that say they have recovered completely always have a 'but.'
"I'm completely recovered and back at work, I can drive, run and ride a bicycle...but if I get a water infection/cold/stomach bug all my TM symptoms come back."It's scary for someone with Transverse Myelitis.
So, how am I at eight weeks post attack?
It's hard to explain. I try to think of how I've improved, or got better and I can't.
I was worse in the beginning, or at least I though I was.
If I'm truly honest, I think I've just got used to the symptoms.
I'm used to not being able to fall asleep at night. I increased my medication twice to help me sleep but it's not working again and I don't want to be dependent on drugs for sleep.
I'm used to waking up in pain. I don't lie there not wanting to get out of bed anymore, I grab my painkillers and just get on with it.
I'm used to taking forever to get dressed/shower/take care of myself. It's not got any quicker but at least I'm doing it myself.
I'm used to walking with my frame or crutches, I know I can take a few steps without them too. I can do it, but it still hurts, it still takes more concentration to move my limbs than it did before. My feet still feel strange and I can't feel the floor properly. My hips don't feel like they are part of my body and refuse to work with me.
I'm used to the pins and needles and I never thought I'd say that.
I'm used to the banding, when my skin feels like it's trying to strangle me, or like I'm wrapped in a huge snake getting tighter and tighter.
I'm used to the pain in my back, my legs, my feet. I take my painkillers but nothing seems to take it away.
Am I getting better?
No, I don't think I am, I'm just getting used to being ill.
Also, I have new symptoms. I get neuralgia in my face, sometimes so bad I'd say it was worse than a migraine.
My ankles have disappeared and been replaced with cankles and I've only ever had them before while heavily pregnant.
My skin is dry like sandpaper no matter how much I moisturise it. My legs peel like they are sunburnt.
Tomorrow I begin neuro physio therapy. I really hope that I will be able to find my body again because this one doesn't feel like me. I have big hopes because hope is all I have.
I want to be able to walk without any aids, I want to be able to go outside by myself, I want to be able to drive again.
I want to be able to have my kids sit on my lap again.
But most of all, I want to be me again.