Well, I got a blog. It’s about time, really, as I have certainly spent a lot of time griping about this and that, so I might as well do it properly.
A bit about me.
I’m Carolyn. I am disabled. I had Hodgkin’s Lymphoma which was successfully treated with chemotherapy. Unfortunately I had a reaction to some of the drugs which started to cause damage to my nervous system.
Once I was in remission from the cancer the neuropathy was supposed to get better. Unfortunately it didn’t. It got much worse. Eventually tests showed that in addition to the damage caused by the vinca-alkoloids in the chemotherapy, I had effectively ‘run out’ of vitamin B12 causing permanent nerve damage and cognitive damage. By that time I was unable to stand up.
So now I have permanent Peripheral Neuropathy with issues with my balance, co-ordination, memory, concentration and terrible, unpredictable, fatigue which hits like a wrecking ball without notice and can be so extreme it leaves me feeling physically sick. I suffer from horrible nerve pains – a bit like getting toothache in any random part of the body. It took quite a lot of B12 injections (these are really painful) and four years of physio to get me to the point I am at now. I walk with crutches and often use a wheelchair. I am on large doses of numerous drugs to combat the pain and other issues. I get muscle spasms and twitches, shaking and falls, and other less pleasant problems which no-one wants to read about.
Mainly as a result of my restricted life and associated issues, I also suffer from bad depression which, as anyone who has had it will understand, also does its best to ruin things on a regular basis.
I also have a lung disease called Bronchiectasis, which means my lungs don’t empty themselves on their own and fluid builds up in them. If I can’t empty them the fluid gets infected. I have emergency antibiotics to hand to take at the first sign of infection. Otherwise I end up in hospital. Sometimes I cough so much I get hypoxia, or something called ‘cough syncopy’ where I pass out. The lung disease is thought to be possibly linked to the damage caused by the chemo and B12 deficiency. Or to the fact that lymph-nodes behind my sternum are still scarred from the cancer. Or both, or neither. I’m told it’s often not possible to pinpoint a cause for the disease. Repeated infections cause further damage to the lungs, and so on. The disease progresses differently in everyone, but the long-term prognosis is never very good. Without appropriate antibiotics the projected life-span of someone with Bronchiectasis was between three and five years. These days the antibiotics can keep us going far longer, but for those with the worst damage, a lung transplant is the only option.
http://patient.info/doctor/bronchiectasis-pro
I spend at least ten minutes several times a day on clearing exercises. These can be using a flutter device to cause backpressure in the lungs and force stuff out, ‘percussive’ clearance (being bashed on the back by my partner) and gravitational drainage.
My carer is my partner, Allan. He looks after me and gives me the necessary regular beatings to loosen the stuff in my lungs. He pushes me round in my wheelchair. He regularly picks me up when I end up on the floor. He reminds me to take my medication, stops me from doing stupid things that could hurt me, takes me to my many, many doctor and hospital appointments and makes me lots of cups of pathetically weak tea.
He does this all day every day for very little money, without a holiday or a break and generally without complaint (about me anyway). Without him I would find life near impossible.
Allan will be posting on here too, but don’t worry, we’ll sign them at the end so you know who’s talking.
almostlivinglikeanormalperson 