Jan 182011

Last week, I pushed myself ridiculously hard in order to pass my AS Computing Comp 2 exam. I was in college Monday-Thursday, and in for far more hours than normal so I could revise. This was mostly because at the beginning of the week, I was only able to complete about 40% of a past paper, so needed to relearn most of the topics.

I managed the exam on Thursday, and I think I did well in it. I managed to answer all the questions and think I may have even got some marks on the essay-style question. My computing lecturer thinks I will get an A in it, and I think that’s a possibility. I even managed the computing lesson that evening, even though I’d had a very long day at the end of a long week.

I was expecting a bit of a relapse from this, and warned both Interface and my Computing lecturer that I may not be in on Monday (yesterday). What I wasn’t expecting was just how hard this relapse is hitting me. Yesterday, I was only able to sit up for about 50 minutes in total, split into a few periods of a few minutes each. Enough for me to get things done, and I lay in bed the rest of the time.

Today, I can’t sit up at all. I try, but I get really dizzy, my vision goes blurry and dark and I feel like I’m going to pass out, so I lie back down. This makes attempting to go to the toilet interesting, as I have to crawl there and lie down after a few seconds. When I get there and on the toilet, I’m having to sit as far forwards as I can without falling off. In total, the process for going to the toilet and then back into my bed is taking around 20 minutes, and then I’m even more exhausted than I was originally.

I’m also experiencing even more pain than normal (which considering I experience severe pain on a daily basis, is saying something), and other little weirdness like being too weak to hold my phone up and not tolerating Johan touching me at all. My temperature regulation is even worse than normal (it’s not that warm in here as the heating has been off, yet I’ve been sweating tons, and then I’ll get really really cold so I’m shivering under my duvet.

Despite feeling more ill than I’ve felt before, I’m in a super happy bouncy mood. My concentration isn’t that great, but it’s not as poor as it has been on other days, which I’m grateful for. Reading and things does make me more exhausted, but I’m managing it by having several 5-10 minute breaks in between stuff. My light sensitivity isn’t that bad, so I can tolerate the laptop (when I can cope with the weight on my legs or chest) and the light being on, though I have to close my eyes every so often. My sound sensitivity is worse, but not intolerable (though I may need to ask Johan to get my earplugs for me at some point).

Anyway, the result of this is that I can’t go to college, and I can’t do any work because I can’t sit at my computer. I’m hoping this is very temporary, and I’ll be more okay in a day or two. I can use the laptop to type for a few minutes at a time, and to browse for a bit longer. I’ve been writing this blog post since about 5.30pm, and I’m just about to finish it now, after 9pm. I’m going to go to sleep soon (I sent Johan out to meet Total Biscuit as I wanted to go but couldn’t) and will see how I am in the morning. If I’m no better, I’m going to ask Johan to contact my doctor to get reassurance that is just an M.E. relapse, and not anything more serious. Hopefully next time I blog it will be a bit happier.

 Posted by at 9:19 pm
Jan 162011
Danni and I at South Tyneside's autism unit (Inteface), December 2010.

Danni and I at South Tyneside's autism unit (Inteface), December 2010.

In 2008 I moved in with my close friend Danni Brennand. Between us we had diagnoses of myalgic encephalomyelitis (Danni), Asperger’s Syndrome (the pair of us), severe dyspraxia (me), and acute mental illness (Danni). I was fresh out of university and she had just escaped from a supported living unit for people with severe mental health problems, where she had lived for a year. Before that she had been stuck in a psychiatric hospital, as she had nowhere else to go. Together we decided that we would have our own flat, supporting each other with the things we found difficult.

At night before Danni went to bed I would sit with her to try and calm her anxiety. At that time she was feeling actively suicidal and struggling to cope with a combination of insomnia, exhaustion, and the inevitable nightmares that descended on her when sleep did come. She needed someone there with her. When she enrolled in a full-time life skills programme at a specialist unit, I travelled with her to be sure that she got there safely, as she found my presence reassuring and I was able to keep her safe when she had panic attacks.

I was in charge of the household shopping, as Danni’s mobility problems meant that she couldn’t get out of the flat much. She was in charge of organising me. (“Vicky! Remember to…”) She would write out a daily timetable for me on the living room whiteboard. I dealt with any phone calls that were necessary, as Danni can’t use the phone. Danni organised all the bills and calculated the household budget, as my short-term memory problems make it impossible for me to manage my own money.

I cooked for us two or three times a week. Danni was too ill to stand at the stove, but she has better than safety awareness than I have. “Vicky?” she called in cautiously one day. “Is the flat meant to be full of smoke?” With her to open jars and tins for me, to make sure I switched the oven off, to stop me if I did anything too hazardous, and to check the expiry dates on food (once I made a stir-fry with rotten vegetables, dreamily handing a plate of stinking green-yellowish gunge to Danni without registering anything unusual) we remained reasonably well fed. We did rely heavily on ready-prepared foods, as my co-ordination and memory skills mean that daily cooking is not practical – it’s much more time-consuming than it would be for someone without my conditions, and I have a very limited repertoire of meals that I can make. I have specialist kitchen equipment that makes things a bit easier, and with Danni’s support my skills began to improve.

Sometimes our problems areas clashed. In March 2009 Danni had to go into hospital in a hurry. I visited her every day, and every day she asked me to bring in some clean knickers. That request was repeated with increasing desperation as the week went on, but the knickers themselves never materialised.

“Danni, I’ve been organising some support for when you come out. I’ve contacted social services about our – “

“Have you brought me my knickers?!”

“N – no, but I have brought you this statue of Our Lady of Mount Carmel to keep by your bedside, look.”

Despite these minor hiccups, we worked well together as a team. Two disabled women enabling one another to live independently. My old neurologist told my parents that independent living was something I could never manage. She was wrong.

Disability Living Allowance (both Danni and I receive it) helped us more than I can ever say. It’s not a fantastic amount of money: contrary to the myths that abound in the Daily Mail comments section, you can’t use it to go cruising in the Bahamas. But you can use it to buy the squeezy Branston pickle bottles that you can actually open, as opposed to the cheaper jars that you can’t. If your disability means that you can’t drive, you can use DLA to pay for taxis home from work when you finish at 10:30pm and the buses have stopped running. (Yes, I had a job – we disabled types quite often have jobs, you know.) You can use it to pay for all the things you lose as a result of your memory impairments and all the things you break as a result of your physical co-ordination problems. DLA is too small a sum to cover all of this, of course, but it does help a lot. And if you ever have to take a week’s unpaid leave from work because one of your closest friends has had an emergency admission to hospital and you need to be there for her, you can rest assured that you’ve got enough to pay the bills.

And the government ought to be resting assured that it won’t have to foot a care home bill or even fund a support worker, as the two of you are doing such a good job of looking after yourselves. But it isn’t. It’s trying to take away the small allowance that the pair of you use to live independently together. Meanwhile, the Prime Minister is outlining his vision for a ‘Big Society’ where everybody steps in generously to help one another, as though this is some radical new concept that is at odds with the benefit system.

It’s hardly radical. As a member of the disabled community, I have been privileged to meet many generous-hearted people who are going out of their way to assist one another. Some live in mutually supportive arrangements such as the one I had with Danni. Others spend a lot of their time raising money for disability charities or advocating on behalf of disabled friends who struggle to get their needs met. Now that DLA and other benefits are under threat, I have been moved to tears (literally) by the number of disabled people who have stepped forward to offer money and other forms of practical support to those in the community who lose benefits that they will struggle to cope without. And the funny thing is that none of these people are fabulously rich. If anything, they’re quite hard up. But that doesn’t stop them caring. Go here and see for yourself: http://philgroom.wordpress.com/2011/01/16/5-quid-for-life-in-search-of-a-campaign-name/

Meanwhile, the politicians who support the benefit reforms seem intent on portraying them as workshy cheats. They may deny it, but when they devote such relentless energy to ‘reforming’ a benefit that is already notoriously difficult to claim and has only a 0.5% fraud rate, you have to wonder what their motivation is. In declaring that they plan to cut down DLA claims by 25%, they aren’t thinking about the people who make up that figure at all. If they do think of us at all, perhaps they just see easy targets. Clearly they haven’t met Danni when she is in a bad mood.

The purpose of One Month Before Heartbreak is to illustrate that the figures have faces. If you are affected by DLA reform, or benefit changes more generally, please write about it. Submit it to the government’s consultation. Make it public. Share your strength.

I think that is what the focus should be here – strength. I could have written about so many other things, including the huge difficulty I had in claiming DLA in the first place; how awkward the system is for people with my problems to understand, let alone navigate successfully; the lies and bad treatment I got from the DWP; the intimidating nature of the medical assessment process; and the effect this had on my health. I didn’t. I wrote about me and my good friend, because ultimately this is what matters the most – the people involved.

 Posted by at 10:00 pm
Jan 162011

Before you read my post, I want you to read this.

Back? Okay.

I am disabled. I have always had some form of disability. I was born autistic, with difficulties in communication and interacting with the world, a world that’s not really designed for people who think and see things like I do. I developed mental health problems when I was about 12. When I was 18, I had my first stay in a psychiatric ward. While there, I was told I should claim DLA, as my mental health problems were so severe I needed a lot of help just to live. I was one of the lucky ones- I applied and was awarded Higher Care and Lower Mobility on my first try. This means that the assessors agreed that I needed a lot of help during the day, at night, and when I went out.

When I say I was lucky, I mean it. Getting that rate of DLA meant I was automatically considered too ill to work, which meant that I could claim Income Support for incapacity purposes (I was ineligible for Incapacity Benefit as it was then because I’d not made any national insurance contributions) without having to go for medicals. Getting it on my first try meant I didn’t have to try and navigate the appeals system, which I was too ill to try and do. It meant that my partner could claim Carer’s Allowance, which meant he didn’t have to try and work and look after me full time.

The money from DLA pays for me to live as normal a life as possible. The mobility component pays most of the cost of my husband’s travel pass, as I cannot travel independently. The care component has paid for my wheelchair, for other items to help me with my disability. It has paid for ready meals and takeaways so when I was living alone I was able to eat everyday. It has paid for extra clothing when I’ve had weight gain due to medication. It paid for a clothes dryer which meant until my recent relapse, I could still do the washing. It pays for my internet connection so even when I’ve been very ill, I’ve been able to communicate. It pays for my travel costs to attend a college 20 miles away, one where I get specialist support that has enabled me to continue with my education. It has also enabled me to have enough money to pay for my interests, which went a long way in helping me come out of my nearly 12 year long depression.

In addition, Income Support is a passport benefit. It means that my council tax and rent are paid for me (I’m on Local Housing Allowance, which enables me to live in my flat). It pays for my prescriptions, which while I was trying out lots of different medications to try and help me would have been very expensive. The main thing though is that while I am ill, I don’t have to think about working, and nor does the person looking after me (a full time job that currently involves 6+ hours of travelling four days a week, on top of everything else).

I was hoping that once my mental health improved, I would no longer need DLA at the rate I was getting it. I will probably always be eligible for and need some DLA- even when completely well, my communication difficulties and lack of safety while outside caused by being autistic would mean I’d always need some support. Unfortunately, after getting the flu in August 2009 I continued to be physically ill, and I was diagnosed with M.E. a few months ago. The caring duties of my husband now include pushing me to college (as I am unable to walk for more than a minute, or self propel my wheelchair for much longer), physically helping me with tasks such as washing and dressing, making sure I eat even when I feel too ill to do so, and taking over all household tasks as I’m physically unable to do. I also need near constant companionship, because although I’m no longer depressed my brain is still quite capable of turning into a scared, shaky rat thinking that everything is out to get me and I need reassurance that it isn’t the case.

Do I want to work? Yes, very much so. I still look at job adverts in areas that I would be good at, if only I were well enough. I imagine applying for those jobs, being able to earn a wage, to stop being reliant on other people. I dream of being able to walk into an office, being able to manage a full workday, being productive. That’s all not possible at the moment. I manage college part time with frequent rest breaks and with an appalling attendance record. My lecturers are understanding if I cannot get into college that week- an employer wouldn’t be. I also have to rely on support staff while in college to push me to my lessons, to take me to get my lunch, to help me get to the toilet. The reason I continue to go to college is to get me the qualifications I need to eventually be able to work in an area that interests me, as most jobs for those without qualifications aren’t suitable due to things that go with being autistic, such as being sensitive to noise.

Take away my DLA, and I will no longer be able to attend college, or to buy the extra items that being disabled I need, including things like my wheelchair. Take away my Income Support, and I will no longer be able to live in my flat, to take my medication, to eat, to manage anything. I’ll be homeless while unable to walk, while unable to communicate effectively, while unable to care for myself. Force my husband to work, and my illness will get worse (as it did while he was ill). I’ve not been suicidal now for several months, but being dead is probably preferable than trying to live without the support, both financial and practical, that I currently get.

I apologise for the muddled-upness of this blog post. I used all my writing spoons on my exam on Thursday.

For Johan’s blog post on this subject, please see Why We Can’t Grin and Bear It Anymore.

For other blog posts in this blog swarm, please see One Month Before Heartbreak.

Please feel free to link and share this blog post. I’m releasing it under an Attribution-Share Alike licence.

Creative Commons License
On Disability and DLA (One Month Before Heartbreak) by Danni Brennand is licensed under a Creative Commons Attribution-ShareAlike 2.0 UK: England & Wales License.
Based on a work at dannilion.com.

 Posted by at 2:29 pm
Jan 072011

(Spot the WoW reference :P)

Yesterday I was really proud of how much I’d been able to do the last week- making microwave meals for both me and Johan, looking after Johan, keeping the kitchen clean (including washing dishes everyday). I even managed to do a past paper and some revision yesterday (which has shown me the areas I still need to revise).

Today: crash. My body is letting me know in every way it can that I’ve been pushing myself way too hard, and I have full blehness. I got up after 11 1/2 hours uninterrupted sleep (very unusual), sat at my computer, opened my post, and had to go straight back to bed. I alternated between reading and dozing in bed, before finally getting the energy to sit in my computer chair for a bit.

Luckily, I’m now feeling a bit better. At least I don’t feel like I’m going to faint every time I stand up, and can remain standing for more than a couple of seconds. I’m still feeling really weak and ill, more than normal, but I’m sure it will get better so long as I rest properly.

My exam is on Thursday. Not being able to get into college this week because of Johan’s flu means I’m feeling very unprepared. For various reasons revising at home is difficult, so most of my revision will have to take place at college. Does anyone know any online sites for revising for AS Computing, specifically the Comp 2 exam? My past paper shows that my main issue is wording- I know the material, I just don’t use the right words which would lose me marks. That’s something to be grateful for at least, as it means if I can get all the terminology into my head I should get a decent grade.

 Posted by at 11:57 pm
Jan 032011

Stolen from Useless CPN, Serial Insomniac and Not A Nursing Student Blog. (I read a lot of blogs who read each other… which is how I found most of them.)

Anyway, 2010 in 40 questions 🙂

1. What did you do in 2010 that you’d never done before?
Get married 😀

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I may have set some, but I couldn’t find them so have no idea if I kept them. Probably not. I have made some new ones- they’re in a recent post 🙂

3. Did anyone close to you give birth?

4. Did anyone close to you die?
Someone who I wasn’t exactly close to, but I liked and admired, did.

5. What countries did you visit?

6. What would you like to have in 2011 that you lacked in 2010?
Energy, and the ability to walk relatively distances again.

7. What dates from 2010 will remain etched upon your memory, and why?
13th August. I got married 🙂

8. What was your biggest achievement of the year?
Finally getting properly over the 12 years of depression.

9. What was your biggest failure?
Not keeping in contact with Sammie.

10. Did you suffer illness or injury?
I already had M.E., but I was only diagnosed in October and it got a lot worse, and my part time wheelchair use became near full time wheelchair use.

11. What was the best thing someone bought you?
My wedding ring (Johan bought me it :))

12. Whose behaviour merited celebration?
Johan’s, for being being so patient and understanding through everything this year.

13. Whose behaviour made you appalled and/or depressed?

14. Where did most of your money go?
Living costs, wedding and holidays/honeymoon.

15. What did you get really, really, really excited about?
Getting married!

16. What songs will always remind of 2010?
Fireflies by Owl City, most of the Glee songs 🙂

17. Compared to this time last year, are you:
a) happier or sadder?
b) fatter or skinnier?
I think I’m about the same, though I’ve lost and gained about a stone through the year (my weight, it be the fluctuating).
c) richer or poorer?
About the same.

18. What do you wish you’d done more of?
Housework (even though it was being ill that stopped me).

19. What do you wish you’d done less of?
Overdoing it when I got that cold a couple of months ago, because it triggered a big relapse.

20. How do you plan to spend Christmas?
I spent it with Johan 🙂

21. Did you fall in love in 2010?
No, because I was already in love 😛

22. How many one night stands?
None 😛

23. What was your favourite TV programme?
Doctor Who!

24. Do you hate anyone now that you didn’t hate this time last year?
Nah. I don’t hate anyone. I strongly dislike some people (or their actions, to be more accurate) though.

25. What was the best book you read?
I can’t remember any of the books I’ve read in 2010 (that sucks).

26. What was your greatest musical discovery?
Brett Domino 🙂

27. What did you want and get?
Married 😀

28. What did you want and not get?
A new television 😛

29. What was your favourite film of this year?

30. What did you do on your birthday?
I feel terrible about this, but I can’t actually remember.

31. What one thing would have made your year immeasurably more satisfying?
Being able to enjoy being mentally much more healthy, instead of getting physically worse. Oh, and being able to remember things 🙂

32. How would you describe your personal fashion concept in 2010?
Erm… purple?

33. What kept you sane?
Quetiapine, trazodone and chocolate.

34. Which celebrity/public figure did you fancy the most?
Summer Glau

35. What political issue stirred you the most?
The changes in the benefits system.

36. Who do you miss?
Quite a few people.

37. Who was the best new person you met?
There’s a few 🙂

38. What was the best thing you ate?
Eton Mess in a restaurant in the MetroCentre. It was amazing.

39. Tell us a valuable life lesson you learned in 2010?
Life is worth living, even if you can’t see it.

40. Quote a song lyric that sums up your year:
This was a triumph. I’m making a note here: HUGE SUCCESS. 🙂

 Posted by at 11:35 pm
Jan 012011

I hope 2011 is a wonderful year to you all 🙂

I spent the last few hours of 2010 trying to clean the kitchen (I succeeded) and listening to Total Biscuit’s Blue Plz. Johan’s still got the flu, and it looks like my nephew Martin also has it. He had to go to hospital today he was that ill. I hope they both get better soon.

 Posted by at 12:24 am