Monday, 2 November 2015


Today is Colour the World Orange day, the international awareness day for CRPS (Complex Regional Pain Syndrome).  To try and increase understanding I'm stealing a format (and many of the questions from the invisible illness week "30 Things" meme.

CRPS is a chronic pain condition, there's no known mechanism for it yet but it is usually triggered by an injury. CRPS likely has a number of causes which almost certainly include neurological and autonomic elements. CRPS is characterised by severe pain, swelling, temperature changes, discolouration and motor dysfunction. for more information click here.

1. My CRPS affects: my whole body - it started in my right arm but then spread.
2. I was diagnosed with it in: late April 2007 after an accident at school
3. But I had symptoms since: I had some symptoms start which could have been CRPS in October 2006 - Officially though my CRPS started early April 2007.  I only had a 2 - 3 week wait for diagnosis, I know others who had to wait years.
4. The biggest adjustment I’ve had to make is: not doing everything! Pacing and prioritising is hard but if I don't then I end up being able to do very little at all.
5. Most people assume: That my pain is not that high because I'm not visibly distressed by it. My normal daily pain level usually hovers between a 7/10 and an 8/10. 
6. The hardest part about mornings are: The moment after I wake up and the pain hits me life a truck. I never get used to that.
7. My favorite medical TV show is: Casualty
8. A gadget I couldn’t live without is: My electric wheelchair - no contest. Closely followed by my inflatable bath lift.
9. The hardest part about nights are: not being able to sleep.
10. Each day I take 30 pills & vitamins plus other medications in liquid form. (No comments, please).
11. Regarding alternative treatments I: am willing to try most things. I have regular acupuncture, the scientific explanation says it works the same way as a TENs machine. Even if it's a placebo I don't care so long as it works. 
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career: I can't work or study at the moment. Hopefully I'll be well enough to go back to uni soon.
14. People would be surprised to know: the slightest touch to my body hurts, clothing hurts, hugs hurt, the wind on my skin hurts. You probably don't know because a) I'm not a big fan of going round naked and b) I like hugs. 
15. The hardest thing to accept about my new reality has been: that I can't just power through.
16. Something I never thought I could do with my illness that I did was: so many things. Right after diagnosis I would have said writing. Now I say go to uni,  
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is: swimming. It takes too much energy.
19. A surprising way CRPS effects me is: the amount of fatigue I have, it's not one of the headline symptoms in most people CRPS but for me it is as disruptive as the pain.
20. A new hobby I have taken up since my diagnosis is: paper crafts.
21. If I could have one day of feeling normal again I would: climb a mountain. Or dig the garden. Something physical anyway.
22. My illness has taught me: a lot about myself. I would never have known how resilient I am without it.
23. Want to know a secret? One thing people say that gets under my skin is: "it can't be that bad". If I'm telling you it's bad it's probably worse than you can imagine. I don't really talk about my normal level of bad.
24. But I love it when people: do little things to cheer me up. Send me a text or come over for tea/coffee. 
25. My favorite motto, scripture, quote that gets me through tough times is: 
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Colour The World Orange because: I'm part of an organisation called CRPS UK where we work to help to improve the lives of people with CRPS. Awareness and education is a big part of that.
30. The fact that you read this list makes me feel: happy that you've taken the time to learn.

Friday, 1 May 2015

Dear Mr Cameron, from someone who's life is no life at all. #BADD2015

Dear Mr Cameron,
Last night on question time you said "a life on benefits is no life at all". I am upset, now I know I'm not your target audience, I have no intention of voting conservative, but for you to disregard my life just like that is plain hurtful. I think I need to tell you a little about it.

This is what makes you say that my life "is no life at all":
2009: My first claim for benefits was at age 15 (three years after the onset of my disability), for DLA.  Had an ATOS assessment. I was turned down and was subsequently awarded it at appeal a few months later.
2010: At 16 had to reapply. Again I was turned down initially, I had an assessment with an ATOS doctor and was still turned down. At appeal 2 years after the original claim I was awarded DLA.
2011: In the mean time my condition changed so I put in a new claim, had an ATOS assessment and this time I received a small award straight away, I was entitled to more but to scared of losing what I had been awarded to appeal. At the appeal for the previous claim this was changed so I was awarded a higher amount.
2013: age 19 applied for ESA. No medical (that's rare), after more than 6 months waiting (for the uninitiated, a decision is supposed to be made in 12 weeks at the time 6 months was at the time around the average wait) I was placed in the support group (the higher rate where you are not expected to work or prepare for work).
2015: DLA claim due to end in the summer I applied for PIP in February. After a stressful assessment (though not as bad as the ATOS ones) in received the decision this week awarding me the highest rates of PIP.

I have never worked. Benefits have been my only income, I don't expect that to change soon. I am one of those people who you said have "no life at all" . Based just on my income, on the information attached to my national insurance number, you have written me off. You have reduced me simply to the source of my income.  According to you I am nothing else my life has no other qualities, my life is not a life.
What my NI number can't tell you is what it's happening outside of my bank account.

In no particular order:
I am a university student (a politics student no less)
I am an activist
I am a Christian
I am disabled
I am a leftie
I am a volunteer
I am a democratically elected officer at my student union
I am a tweeter
I am a reader
I am a hugger
I am a listener
I am a thinker
I am a problem solver
I am a friend
I am a little sister
I am a big sister
I am a daughter
I love pretty things, flowers and glitter
I am a people person
I am an animal person
I am a letter writer
I love to cook
I sleep a lot (and I mean a lot)
I like to see other people happy, I try to make it happen
I need help to do, be and enjoy all of those things
I am a recipient of social care

Mr Cameron my life(which is not a life) is wonderful and varied and full. My life (which is not a life) is hard and complicated and needs a lot of planning. My life (which is not a life) is beautiful, and fun and exciting and boring. My life (which is not a life) is exhausting and colourful and full of love. My life (which is not a life) is a lot of things but I can assure you it is definitely a life. It is a life worthy of respect, a life that ought to be viewed as a whole not reduced to where I get my money from.

By characterising me as having no life at all you have written me off and those like me off as not worthy of your attention as voters, just as an object of scorn. You have used me as an example of the perils of social security, you have invited people to look at me and condemn my life (which is not a life), you have opened me up to ridicule and abuse. Sure there's always the get out clause "I didn't mean you, I meant all those other people" but how many of those other people are like me?* You don't know, the media don't know the public don't know because you don't care have decided that the only important information about us is the our status as claimants. For you people are either shirkers or strivers there is no in between and there is no possibility that people can be complex. People are one or the other, that's it.

Someone might start their adult life (which is not a life) on benefits by claiming carers allowance at age 16, they're not able to claim it under 16 regardless of the level of their caring responsibility.

Someone might start their adult life (which is not a life) on benefits by claiming tax credits because their pay is ridiculously low.
Someone might start their adult life (which is not a life) on benefits by claiming job seekers allowance because despite leaving school with okay qualifications they cannot find a job easily.Someone might start their adult life (which is not a life) on benefits for any other number of perfectly valid reasons.
For me and many others the reason I depend on benefits in order to live my life 
(which is not a life) is disability.
Guess what, all these lives are complex and messy and beautiful and hard. Their lives are all lives. You do not get to dictate who has a "life". That is not okay. You cannot say who's life is worthwhile and who's life is not. To do so is dangerously close to saying something else, it almost sounds like you're talking about who should get to live.

In truth though my life (which is not a life) could be taken as a social security success story. Social security benefits have meant I can make a contribution to society as my impairment and the disabling barriers of society will allow, without worrying about whether I can afford to eat.
Someone Who's Life is No Life at All
Someone Who's Life is a Life and Worthy of Respect as Such.

*That's no judgment on the people who aren't like me, just a response to the comment I always get when I raise this issue.

This post was written for Blogging Against Disablism Day 2015 #badd2015 more BADD posts  can be found here.
I had planned to post a blog on housing but right now this is more important.
[The Blogging Against Disablism Day graphic, depicting a colorful grid, with each square showing a different colored stick figure person, like the ones for the restroom signs.  Some of the stick figures have mobility aids, and one of them is just a handicapped symbol.  At the top it says "Blogging Against Disablism"]

Sunday, 12 April 2015

Decisions and priorities.

This week I made a decision. It wasn't a nice, easy, fluffy, reassuring decisions. Although when someone says "I made a decision" very rarely is it an easy decision to make. No, the statement of having made a decision usually means there was careful deliberation, careful thought and it wasn't an easy decision that could be jumped into quickly without much thought.
The sort of decision which require you to say that you have made a decision are never easy.

The decision I made this week was the sort of decision which leaves you feeling raw, like someone has furiously rubbing away at your insides with sandpaper. It was the sort of decision which leaves you exhausted, mentally and physically. The sort of decision which leaves year mind full, your heart heavy and your eyes wet. The sort of decision that leaves you with a hole in your gut, ready to be filled up with something but exactly what you're not sure.

What was the decision? That I can't go on as I am. That I am not willing to further sacrifice my physical and mental health in order to pursue higher education. Why is it such a big issue? Isn't it a fairly logical sensible decision? Maybe but to explain why it was so hard I need to take you back a little way to 2010.

In September 2010 I started a full time photography BTEC level 3 (for people out of the UK this is a vocational qualification considered roughly equivalent to A level exams taken at age 18). When I say full time what I mean is 3 full days per week in college, plus an hour or so travelling each way. I enjoyed it, I was doing well. But by October half term, having done 6 weeks at college, I was completely exhausted. I rested on my weeks holiday and not a lot changed, I was still exhausted and I still wanted to do my course. Being the stubborn person that I am I went back after the holiday, the travel plus the activity required in the course, plus some other big stresses meant that by November my health had completely crashed. I couldn't stand for more than a few seconds, I couldn't get upstairs to bed, pain levels skyrocketed and I couldn't cope with anything except minimal levels of light and sound. I got my first wheelchair. My immune system was shot and that winter I got virus after virus culminating in appendicitis in February and an infection in the surgical wound. The college did all they could to support me but I just wasn't well enough to go back and do the hours I would need to get the work done. I finally dropped out (after a very low attendance rate) in March.

I ignored what my body was telling me and things just got worse and worse. It took me two years to even get close to where I was in the Summer of 2010. It's a pattern that has repeated too, I ignore what my body is doing because I'm prioritising education and my health crashes. I lose function, I get more pain, I'm more anxious, I get more viruses the whole lot. Even if I'm just ignoring it for a short time like an exam period (see hospital stays summer 2011 and summer 2012). I'm not willing to go back there again if I can avoid it.

Right now I see a lot of the same patterns and symptoms occurring as happened in 2010. I'm gradually getting more and more exhausted; I'm having trouble with light, noise and people; I'm putting a load of pressure on myself; I'm falling behind in work; I'm losing some physical function; I'm getting really anxious and I'm putting education before my health. It is not okay for this to carry on and something has to change.

The problem is that when I'm at uni I need to do three sets of things. 1) Daily living tasks, which includes directing carers; it is a lot harder to do this at uni than it is to do it at home. 2) Academic work: reading, writing essays, attending lectures and tutorials etc. And 3) Do enough Social Stuff to keep anxiety and depression to a minimum. But I can't do all of them, it just hasn't worked - using every scrap of energy I've got I can maybe do half of what I need to do in each task (or one really well, half of another and none of the other one). I've had lots of support from all sorts of people and I've kept trudging onward, doing pretty well academically but not really looking after myself. This takes it's toll, when I don't look after myself I get more exhausted and more anxious so I can't think clearly and have difficulty attending lectures. I put all my energy into doing the academic work and I end up not being able to do the academic work. It's been a hard decision to make because I love uni and love what I get to do when I'm there and I know that prioritising my health will mean all of that is going to change.

Exactly what the outcome of this decision will be I'm not sure, I need to speak to my university support team to see what they can do to help me. At the moment it looks like the best case scenario is that I sit my exams later in the summer, stay mostly at my parents home and finish my first year just a little later than everyone else. I have no idea how possible this will be, whether it's logistically possible or whether I will have the energy to put in the work that I need to.
There are a whole host of other options too and the disability team may have ideas I've not even thought about.

So I don't really know what will happen. Right now I'm finding things to soothe my soul, to relax my body and unwrap my mind from the panic that has been buzzing about for some time. Having made the decision that I'm going to proritise my health and my enjoyment of life has freed me a little. I feel freer to breathe and freer to do what I both want and am able to do. I still feel raw and a little churned up inside but it feels better than before. And it feels an awful lot better than the prospect of carrying on as I was, of keeping bullheadedly ploughing on doing what I am "supposed" to be doing. It feels so much better than the prospect of crashing so hard I end up in hospital again or in a state where I'm not able to do any of the things I love.

It's not easy, it goes against my instincts, but it is much better this way.