At the start of this year, I was admitted to hospital as an emergency.
The only time I’d been in hospital for anything other than having babies was when I had a tonsillectomy at seven years old.
I was scared about what was happening to me and to be honest my fear overcome my worry about what was going to happen at home. This lasted a couple of days as I lay there barely able to move having test after test and hooked up to a drip for my drugs.
When I started to improve a little that’s when I started worrying about home and missing everyone.
However, I was still really unwell and I decided that there was nothing I could do and they could cope on their own for a few days.
Those few days turned into weeks, but I was still unwell and they seemed to be coping well. I spent my time mostly in bed. They would get me out, shower me and make me sit in the chair next to my bed. After a couple of hours I would say I was hurting and ask to be put back into bed. There I would sleep, or read. Nothing more. I had blanked myself off from worrying about things I couldn’t change and focused on feeling better.
Each day was the same routine, I had breakfast brought to me at the same time, I had my shower at the same time, I had lunch and dinner and in the evening a cup of Horlicks and a biscuit. I didn’t have to move. No cooking, cleaning, bed making, washing up, laundry etc.etc. etc. Just me lying in bed, or sitting in my chair, reading whenever I felt like it.
In the evening more mobile patients would visit our ward and sit and chat. They may have been more mobile but their health was not so good. They had been through a lot and had a lot more to come. But still they visited and chatted and we laughed a lot too. I was lucky, I had hopes of getting better, I didn’t have anything life threatening and I didn’t need any operations. I was truly lucky and these amazing people showed me that.
Sometimes I’d have visitors come to chat which was nice. I’d say it broke the boredom but if I’m honest I didn’t really get bored. I don’t know if it was because I was so unwell but the rest and doing nothing was actually agreeable, not boring. I missed my kids but they didn’t seem to be missing me much. They had everything they needed.
When I was able to I googled my condition and tried to figure out how long it would take to recover. My consultant was saying I would get better and Google confirmed 2-8 weeks. It looked pretty good, I would be back to myself in a couple of weeks….but I wasn’t. Eight weeks seemed a long time to wait for recovery.
Then after two weeks my consultant decided I could go home. My feelings were so mixed up. I wasn’t mobile and I knew I wasn’t going to be able to do anything when I got home. I knew that things would have got bad in my absence, would the toilets have been cleaned, would the laundry be done, would the bedrooms be tidy. My other half is really good with looking after the kids and cooking, but his idea of housework is running the vacuum around the living room carpet and that’s it.
Even more worrying was…had the Christmas tree been taken down, it was mid January now!
My other feelings were excitement of being around my family again, being in my own home and my own bed. It had taken me a while to get used to the hospital bed but fiddling about with the controls I’d managed to stop slipping off the end.
My house was adapted for me before I got home, I had aids in the bathroom, around the toilet, in the bedroom, in the kitchen, a new banister on the stairs so we had one on each side and, of course, my walking aids. Apparently my condition did not warrent the hire of a hospital wheelchair despite my not being able to walk very far.
By the time I had to go home again I was feeling very mixed up. My family were coming to pick me up but I was sat there in my pyjamas, unable to reach my clothes or get dressed, unable to pack up my things, unable to walk basically. It drove me mad. I like to be in control. The tea trolly came around while I was waiting and I suddenly felt so sad, I wanted to stay in the hospital where I had no worries and everything was done for me. I couldn’t go home, I couldn’t do anything for myself.
I was also feeling really excited at seeing my family and going home.
I was also going to miss the friends I’d made on the ward.
I was also going to miss the lovely nurses.
I went home, it was painful. Painful in the chair to the car, painful in the car, really painful getting into the house without a wheelchair. I tried to keep smiling, I was going home, back to my family.
When I got home and sat down I cried. I couldn’t help it. I cried for lots of mixed up reasons.
I cried with relief at being home.
I cried because I’d missed my kids.
I cried because I was in so much pain.
I cried because it was obvious that the Christmas tree had been taken down in a hurry because I was coming home and that there were the kids Christmas presents all over the floor. Christmas had only just ended at home, despite everyone ending it nearly two weeks ago.
It was so hard being at home in the early days. I couldn’t do anything and had gone from the one who did everything for everyone to being the one that had to ask everyone else to do everything. I couldn’t wait to get better in eight weeks…well there was only six to go.
Then I started talking to other suffers and the truth dawned.
It seems that only a third of people with my condition, Transverse Myelitis, get better in eight weeks. Just one third. I was not one of them.
It’s now eight months later (nearly nine) and I’m a lot better but I’ve still not recovered. In fact I think at least fifty percent of my recovery is just me getting used to my body being so useless and getting on with it. The pain, I believe, hasn’t changed much at all, but I’ve gotten used to it so it doesn’t bother me so much.
I still miss being in hospital. Life is so hard, everything is so hard, even the simple things. I’d love to go back to just lying there and not worrying about anything. Is that bad? I don’t know why people hate hospitals so much, the truth is I quite like it.