24 Hours In My Life – BADD 2012

It’s Blogging Against Disablism Day today and I’ve been having trouble working out what to write for this piece. There are so many aspects of disablism I think the world needs making aware of and so many assumptions that need challenging I find myself unable to choose one and without the energy to write a 10,000 word essay on the subject.

Instead I’m going to blog 24 hours in my life in an attempt to give people a little bit of insight into a fairly average day in my life.

3am, 30th April
I’m awoken from a dream in an awful lot of pain. I check the time, reach for a handful of painkillers and lie as quietly as I can waiting for them to kick in. Eventually they do.

6.00
I wake up with the taste of vomit in my mouth, luckily I’ve not been sick. I then doze for a bit feeling exhausted after some very disturbed sleep.

9.00
I sulk because I need a wash but my partner has left for a doctors appointment before university. I have a bath board to help me get into the shower but I don’t think I can stand safely whilst in this kind of pain. I need support and I don’t have it. It isn’t my partners fault, he shouldn’t have to stop living to wash me. There should be help available from government but there isn’t because my needs are not high enough.

9.05
I start getting dressed. Bending & stretching hurts so much tears are pricking my eyes and I can’t find any warm looking clothes that will be comfortable over my slightly swollen & sore abdomen. I’m pretty convinced by now my bowel is obstructed and that’s what is causing today’s flare up. I try not to worry myself, this happens about once every week and it normally resolves itself pretty fast.

10.10
I finish getting dressed, taking a breaks to tweet about the news contributions based ESA is being removed from people after a year and how it increases disabled peoples dependency on carers (who are more often than not family, partners or friends and who are not paid or trained to help and as such are statistically the most likely to abuse the person they are caring for).

10.30
Time to go to psychotherapy to deal with the PTSD. I can’t walk 3m without tears but I have to somehow pull myself from the house to the taxi using only my crutches as I can’t physically navigate my wheelchair up the steps to the road on my own. The council won’t provide us with a wheelchair ramp because I’m not eligible for a NHS electric wheelchair (I would have to be completely unable to walk).

10.35
Taxi driver has noted the tears in my eyes and the crutches and asks “What’s wrong with your leg then?”. This happens pretty much every time I get a taxi alone. Sometimes I say “It’s personal” or “I’d rather not talk about it” but that can lead to the drivers getting pissy because I’m being rude (oh the hypocrisy). Today I don’t feel up to risking a confrontation by not answering so I explain I have damage inside my abdomen effecting both my organs and nerves. Today the driver nods and after getting a bit depressed on my behalf when I tell him there is no cure he gets on with driving. Often I get a lot of people trying to ‘help’ by suggesting I get a second opinion (I’ve had 4 so far), go private (like I can afford that), trying some kind of ‘alternative’ treatment (I’m not paying for a placebo at best) or they tell me inspiring tales because I need cheering up. Actually, all I want from them is a taxi ride with a bit of banter about the weather or local roadworks.

11.00
Psychotherapy starts. It’s personal and exhausting.

12.00
I order another taxi. This driver gets a call just after I get which lasts until in so this journey is blissfully question free until I have to ask him to pull over so I can throw up in a drain. The driver tells me off for being sick, I can’t be bothered to argue that it’s because my bowel isn’t moving properly so I nod along and am quite pleased when I get home.

12.20
I get home and I’m in agony. I need to get to bed but there is a flight of stairs in the way. I have to shuffle up them slowly on my bottom, crying with pain as I go. I look at the bathroom remembering how I still really need to wash but I know I can’t wash myself alone. It makes everything feel a bit worse. We asked for a stair lift to negate the stairs but we couldn’t get one because we are in a privately rented house, nor could we get a hoist for the bathroom.

12.35
I make it to my bed where I lie down and take some more pills then eat a sandwich my partner made me. I realise that I don’t have the spoons to manage the stairs again (the kitchen is downstairs, the bathroom and toilet is upstairs) so I settle in.

13.00
I faff on the internet and start writing this. I also listen to the phones ringing downstairs and realise I left my mobile as well as the house phone in the living room. There is no way I can get to them so I let them ring and hope it’s nothing important.

13.55
More pain and sickness, I feel a naff and I want to call someone but a) I can’t get to a phone and b) there isn’t anyone I could call about it. Plus it’s not like this is a rare occurrence. After a few years of this happening a “I’m in agony and I can’t stop being sick – no there is nothing anyone can do” call looses it’s effect. I deal with it by trying to keep myself distracted.

14.30
A ‘friend’ on FaceBook has a rant up about sick-note benefit scroungers and unemployed people that have children. I’m already low on spoons so I have a cry. People are being horrid about alleged neighbours who got a free car because they’re “a little depressed”. I state that is not how the system works and if they are eligible for Motability there will have been a good reason backed up with medical evidence (because getting DLA is a nightmare in itself) but I’m told I don’t live in the real world. I’m also hurt I would like children one day but because I can’t work I feel like everyone would hate me if I had one. I walk away from the debate feeling frustrated about the levels of ignorance and pernicious misconceptions surrounding disability benefits and human rights in general.

14.40
I blackout after going to the toilet.

14.45
I fall asleep.

15.25
I wake up from a nightmare my PTSD is flaring and I’m scared as well as not sure what’s going on. 

16.15
I’ve calmed down and I’m not 100% sure what I’ve been doing in the last hour. My partner comes home and keeps an eye on me whilst I deal with the pain.

16.40
Pain spikes A LOT. After some screaming and crying it dies down.

17.30
I’m tired but the pain has lessened and I feel like I’ve got a few spoons left. My partner helps me get ready to go visit some friends in the evening.

21.30
The evening has been dogged by pain and nausea but my painkillers are keeping it at a level I can manage. Eating has been really difficult but I’m extremely excited that I kept my dinner down.

23.00
I’m ready for bed and trying to get some sleep but it’s disturbed by pain and nausea.

00.12
I’m awake with pain and feeling pretty rubbish. I haven’t had a good nights sleep in a while and I’m hoping this won’t be another night. My painkillers aren’t stemming the pain and I’ve got one eye on the Oramorph just in case. Happily I manage to drift off after not too long and my day is over.

So that was a pretty average Monday. I’m sharing this (minus some of the more embarrassing parts of dealing with abdominal issues I don’t want to put up online, nor do I imagine you want to read about) to try and raise a little awareness.

My friends I saw in the evening probably have no idea about what happened during the day, they will have just seen me being a bit uncomfortable and chatting and laughing with them. Most don’t notice when I excuse myself to go to the toilet where I blackout or vomit or cry and scream silently, which is ok in some regards – I don’t want a fuss made normally – but it also masks my reality. It makes it look like my pain issues aren’t always around and aren’t all that disabling. It also hides the problems caused by a lot of damaged abdominal organs and the mental health issues stemming from the PTSD.

I guess what I’m trying to illustrate is that much of the really rubbish parts of chronic illness/disability get hidden behind closed doors. This post is a vague attempt to shine a light on that. People never get to see me when I’m bad because I don’t want them too. I won’t invite a friend to see me when I think I’m at risk of wetting the bed and I won’t go out if I don’t think I can manage the pain or my PTSD for the length of the trip.

Best of luck to all the other Bloggers taking part in Blogging Against Disablism Day 2012 x

2012

05/01

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