(Content warning – short reference to social care abuse)
Today is 2 years of being bedbound. I went to the GP to give a urine sample, came back, got in to bed and have been there since (unlessyou count being dragged in to the spare room to lie on that bed whilt the hospital bed was set up 2 weeks later, or the two times I fell on the floor before hte bed rail- but I don’t think that really counts). I’m utterly heartbroken that I am still here but trying so hard to be positive about how far I have come. Things that have changed:
– I can move more and turn over independently. I still have help during care tasks for energy management but if I need to turn over I almost always can straight away or at worst have to wait only a short while until I can
– Toileting makes me a lot less ill, in fact it usually just fits in to my routine. With the catheter I no longer have to spend hours in a soaked bed waiting for a carer (which was horrible), and I don’t have to wait in a lot of pain in retention either. (You can blame the wet beds largely on social services and their downright abusive cuts/refusal to prioritise me claiming I only needed the toilet 4 times a day)
– I am having a pain flare at the moment but over all it’s a lot better
– I can talk in more than a whisper and for much longer periods
– I can spend more time online.
– I can listen to music And watch things sometimes
– I can tolerate more light and am looking for ways to increase the light in my room further
– I can chat online
– I can use my hands to type, write short letters, and colour in.
– I can always feed myself
– I can eat. In the first few weeks the nausea made me lose weight quite quickly
– I no longer spend all day dry heaving
– My catheter no longer pseudo blocks due to bladder neck spasm
– I am no longer taken over by horrible spasms
– Loud sounds make me jump but they don’t make me feel like my heart is going to stop, beat out of my chest.
– I’m less touch and sound sensitive
– I can sit up half way with a back support for 40 minutes for lunch and at about 20 degrees for much of the time I’m not resting.
– I am no longer terrified about my situation, being left alone and emergencies such as a break in or fire. I think these are genuine things to fear but I am not constantly on edge and having bad dreams about it.
– In the first few weeks I had a horrible burning pain in all of my glands (including my chest) that would burn and feel like they were swelling until they rapidly feel like they had popped and then it would godown again. I haven’t had that in a long time.
– I have not experienced full paralysis in over a year.
– I have less episodes of tachycardia (although more recently)
– I can see people at all/with less payback.
– I have taken part in one music project, written a few poems, and started a blog
– Although managing my care is far from cost neutral, it has a much less detrimental affect on my health than previously.
There are probably many more but writing this has made me feel a lot better and more positive. There might be ups and downs,but I am moving forward for sure.