Category: Physical Disability

Danni

International M.E. Awareness Day

Autism, Danni, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

So, I failed with the 30 Day Song Challenge. I’m currently not well, and have spent the last three days in bed (though I did manage to get a bath today, which helps make me feel a bit more human at least). I can’t sit up for more than a minute at a time right now without feeling really dizzy and faint, and having really bad pains in my back.

Anyway, it’s International M.E. Awareness Day today, which is part of M.E. Awareness week. Last night I recorded a video about it. How I am in the video is my normal “bad day”, if that makes any sense. It’s not the worst I’ve been, but I can be better.

Here is a blatantly stolen questionnaire (I got it from Pottering around with ME – Life According to Siz, but I have seen it on Facebook done by a few people as well.

Invisible Illness Questionnaire

1. The illness I live with is: ME/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome

2. I was diagnosed with it in: October 2010

3. But I have had symptoms since: September 2009 (or August 2009, if you include the Swine Flu I had first)

4. The biggest adjustment: Slowly going from someone who was fiercely independent, to having to accept help from Johan, and then from strangers.

5. Most people assume: That if I can do something once, I’ll be able to do it again or on another day. The illness is so variable that it’s hard for me to make plans, and I know that it can upset people when I say I can’t do something. Luckily, up to now most people have accepted I’m ill, which I know is difficult for other people with M.E.

6. The hardest part about mornings are: Actually waking up, and then staying awake for any length of time. I’m also often in a lot of pain first thing in the morning so I can’t judge if I’ll be able to get up that day. Having to get up when my carers arrive (if I can) is also difficult.

7. My Symptoms: Constant flu-like exhaustion, severe pain in my muscles and joints that are only partially helped by strong painkillers, constant headache and sore throat, muscle spasms- mostly in my hands and legs but also elsewhere, temporary paralysis in my legs and sometimes my arms (for a few hours), brain fog (short term memory problems, concentration issues, muddling words), muscle weakness that is so bad that I can’t walk or hold a pen, intolerance to light, noise and touch.

8. A gadget I couldn’t live without is: My computer, a laptop and HTC Desire. It means I can still do stuff when stuck in bed or my flat, and I can still attempt to study for my AS Level. Although not a gadget, my wheelchair is also brilliant as it means I can go out on good days.

9. The hardest part about nights are: Waking up multiple times from severe pain, and being too weak to be able to take any painkillers. Also needing the toilet, as I can’t get there.

10. Tablets a day:High dose (20,000 units) vitamin D for severe vitamin D deficiency three times a week, 50mg quetiapine and 50mg tramadol at night for my previous mental illness (which also help me sleep), 30-60mg nefopam up to three times a day for pain, 400mg ibuprofen up to three times a day for pain, 30mg lansoprazole every morning to protect my stomach from the ibuprofen.

11. Regarding alternative treatments: None so far. There are some I wouldn’t try, but I wouldn’t rule most out if I could access them and I thought they would help.

12. If I had to choose between an invisible illness or visible I would choose: Hard one 😛 I had an invisible disabilty anyway (autism/dyspraxia), so M.E. is actually slightly more visible, as I use a wheelchair. I’d go visible if I have to choose, as it is more obvious.

13. Regarding working and career: Not happening right now 😛 I attend college when I’m able to, doing an AS Level in Computing, which only works because I get a lot of support and understanding at college. I’m wanting to go to university to do Computing and Networking, and then become a network administrator, but it may be that I have to delay it. I also have a backup job option of being a computer programmer if I’m not well enough to do network administration, because I can do that from bed 😛

14. People would be surprised to know: Despite all the moaning and grumbling I do online, in real life I’m normally quite positive and happy 🙂 I also feel that being physically ill is a lot easier to deal with than being mentally ill (at least for me). The moaning and grumbling online is because I’m still not used to being this ill, and change is bad 😛

15. The hardest thing to accept about my new reality has been: That I need so much help with things that when Johan had to go into hospital, I had to go into a care home. Also, not being able to be intimate with Johan, as any touch is too painful.

16. Something I never thought I could do with my illness that I did was: Recover from depression 😛 It’s probably not due to being ill (though the enforced rest helped), but I would have thought that the illness would help keep me depressed.

17. The commercials about my illness: Don’t exist. Which is wrong.

18. Something I really miss doing since I was diagnosed is: Reading long books in one sitting. Going out whenever I fancied it, rather than only when I’m well enough. Being able to meet up with friends. Being able to manage a full week at college. Being able to stay awake for more than a few hours at a time.

19. It was really hard to have to give up: Being independent.

20. A new hobby I have taken up since my diagnosis is: Napping during the day 😛 Seriously, I’ve not really taken up any new hobbies, but I appreciate the one I have continued with (playing World of Warcraft) a lot more.

21. If I could have one day of feeling normal again: I’d probably just go to college, without my wheelchair, and spend time with my friends there and go to all my lessons 🙂 Also spend time with Johan afterwards 😛

22. My illness has taught me: That good friends will stick with you no matter what, and there are plenty of people who are willing to help, even in small ways such as opening doors and things. There are also people who don’t like moving from the wheelchair bay on the bus, which can be frustrating.

23. Want to know a secret: To manage college, I’ve basically given up everything else. I don’t even play World of Warcraft that often any more. Also, my main rule for whether I’m well enough to go into college is can I keep my eyes open and sit up? If so, I go in. This is probably not doing my health much good, but so long as I can get through my exam it’ll be worth it.

24. But I love it when people: Offer to help, with specific things. Open questions are very difficult for me to deal with, so things like “do you need anything?” or “anything I can do?” makes me panic. Also, when friends understand if I don’t reply to messages, or don’t make contact that often.

25. My favourite motto, scripture, quote that gets me through tough times is: It’ll be okay in the end.

26. When someone is diagnosed I’d like to tell them: To listen to their bodies, accept help if it’s offered, and rest. Also, there are no guarantees with this illness, so don’t worry too much if you get worse- there’s a good chance you’ll get better as well. It’s also very individual- what happens to someone else may not happen to you- which includes treatments and things.

27. Something that has surprised me about living with an illness is: Just how variable it can be, even through the day. Also that even little things can cause a big relapse, and that you just have to go with it.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visited me in the care home 🙂 It made me feel much better. Also friends who are understanding and try and make things easier for me.

29. The fact that you read this list makes me feel: Happy that you’ve maybe learnt a little bit about this illness 🙂 Also amazed you’ve managed to read this far 😛

30. Something I want people to take away from this: M.E. is a real, physical illness. It can vary a lot- one day someone with it may seem perfectly fine, but underneath they may be struggling, and if they do too much they could end up unable to get out of bed. It’s also variable, so some people my have it mildly, whereas others may be so severely ill they have to stay in a darkened room, be tubefed, and cannot tolerate any noise, light or touch.

Chlay’s single, Silently (and other stuff): http://chlay.blogspot.com/
http://www.amazon.co.uk/gp/product/B003ES1PWM/ref=dm_dp_trk5
(Also available on iTunes)

AYME (where I’ve met many wonderful people): http://ayme.org.uk

Action for M.E.: http://www.actionforme.org.uk/

ME Association: http://www.meassociation.org.uk/

Danni

An (overdue) Update

Autism, College, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life

A lot has happened since my last update in February. The big thing is that Johan’s depression became really bad, which resulted in him having to go into hospital for a bit on 27th March. You can read more about that on his blog here. This was mainly because we still had no help from social services, and even though they’d been warned he was getting that ill they didn’t do anything.

Because Johan went into hospital, social services had to start providing my care. The morning the nurses came out on the Monday (Colin stayed with me overnight on the Sunday, but had to leave for work at 6.30am) they realised I needed a lot more help than two visits daily would allow, as I need help with getting drinks, getting to the toilet, getting food and stuff, as well as things like washing and dressing. Because of this, it was decided I needed to go into a care home while Johan was in hospital. One was found that would take me, and then an ambulance came to take me there (social services suggested a taxi, until Louise (from college) told them I couldn’t walk and was in an upstairs flat, so would need help getting down the stairs). I managed to forget things as I normally do, but it was sorted in the end.

The care home itself was okay. It’s designed for people with physical and learning disabilities, and the other residents were nice. My room was okay, apart from being very brown (I don’t like brown that much) and the doors being too heavy for me to open. This meant that I couldn’t manage to take myself to the toilet after a while, as even though I could crawl there (until I got ill- more on that in a moment) I couldn’t open the door. There were other problems as well, that we’d not realised would happen. I can’t ask for things for myself and I can’t cope with open questions, such as “do you need anything?” (this is a communication problem caused by my autism). This caused problems. It became a big issue on the Friday when I couldn’t ask to get into pyjamas, so had to sleep in my day clothes, including my big hoodie (I can’t lift my arms above shoulder height, so need someone to help me with my top half of clothing).

By Saturday I was ill- I’d overdone it (crawling to the toilet, lifting my bottle of diet coke so I could have a drink, getting myself ready for college on Wednesday morning because the staff claimed I’d changed my mind about going, when I hadn’t, and things) and I couldn’t sit up unsupported or move much. I was in a lot of pain, and I became non-verbal, which is normal when I’m overloaded. The staff’s response was to keep asking me to talk to them. I couldn’t- I couldn’t remember how to speak, and my attempts to do so failed. They had been warned that this could happen, and it was on my care plan, but it must have been forgotten at the time. One of the care staff even touched my face (there was a big sign on the door telling them not to touch me without asking) which didn’t help, and caused me to panic.

Because of my inability to communicate, I went without a drink or going to the toilet for 19 hours. This was not good. I still have a mild UTI from this. When I finally was able to type on my phone, and get one of the care staff to look at it, I was able to tell them that I couldn’t speak, and that the pain was unbearable and I couldn’t take codeine (on the Monday I’d taken some and the abdominal spasms where horrendous even with the buscopan). They called the doctor out, and while I waited (it took him 6 hours to arrive) Johan came and saw me.

Johan was able to get me out of my hoodie (when I’m that ill, I alternate between sweating madly and feeling too hot, to being freezing, so wearing a big hoodie was not the best), get me a drink and somehow get me to the toilet. He was also able to tell the care staff that I needed more help than they were giving me. Louise also phoned the care home (we were in contact via email) and told them about how my autism affects me, and that they need to ask closed questions, such as “do you need a drink?” or “do you need the toilet?”. After she’d spoken to them, things improved a bit, but there were still times they only asked open questions and I couldn’t answer.

Luckily while Johan was there I slowly got the ability to speak back (being more comfortable and being able to talk with him using messenger helped) so when the doctor arrived a few hours later I was able to explain to him that the pain was unbearable and I was too scared to take codeine because of the abdominal spasms being nearly as bad. He gave me a prescription for nefopam, which I’d never heard of before. The care home promised I’d be able to get it in the morning (it was quite late at this point).

Sunday I was still in a lot of pain, and still unable to get out of bed except to go to the toilet, but at least I was now able to drink. My visit that day also cheered me up a bit, which helped. Unfortunately, the chemist the care home uses decided to not be open that day because of a wedding, and hadn’t told them so I wasn’t able to get any painkillers that day at all. I survived though.

On Monday I finally got my painkillers, and they helped a lot. This meant that by the evening I was feeling much better, was able to sit up, and finally got a bath so felt a lot more human (I’d meant to have one on the Friday, but it didn’t happen). Tuesday I was able to go back to college, but by this point the stress from the weekend, on top of the anxiety caused by not knowing if my needs were going to be met meant my mental health had started to get worse, and I started having my first thoughts about suicide in a year. By Friday’s meeting with my social worker and the home care staff (I had been reassessed during this time- the previous assessments weren’t good enough for the physical disabilities team) I was desperate to get home, so when they said that the home care would only be another 10 days, Johan agreed that it would be better for both of us for me to be home. I’ve been back a week and my mental health has gone back to being mostly stable, so I guess it was just the stress.

The good news is that the home carers start on Monday 😀 I’m getting 12 hours a week from them, some in the morning, some in the evening. They’ll help me with getting up in the mornings, getting ready for bed at night, baths three times a week, and also help with doing some basic housework on days I’m not having a bath. This should take a lot of the stress off Johan (who is doing a lot better), which should help a lot.

Okay, what else has happened? I have seen the M.E. specialist, who wants to make sure my tiredness and stuff is not caused by depression (erm, apart from the blip caused by the stress of being in the care home, I’ve not been depressed for a year) or being autistic (even with the explanation I was given about it being caused by overload, I’m not convinced it can cause such exhaustion that you can’t walk). Hopefully once that’s happened, and the M.E. is confirmed again, I should get some coping strategies and things to help. I know that M.E. can’t be cured, but I’ll accept any help at the moment I can, as my functioning is really poor.

I also got my exam result from my AS Computing. I got an A 😀 This is awesome. My predicted grade for the next exam is either an A or a B, depending on what sort of day I’m having. I’ve been enjoying the programming part of the course, even though Visual Basic.net is a bit weird in how it does things. I’m still slightly behind, as I’ve missed a lot of lessons because of being too ill to get in, but I’ll be able to catch up as it’s the Easter holidays now.

Interface has been good. I’m now running an Internet club for the other students, doing stuff like how to send emails, how to behave appropriately on different parts of the internet, how to keep yourself safe and things. I’m hoping it’ll go well.

Tomorrow I’m going to a friend’s wedding. Yay! This will be the first wedding I’ve ever been to as a guest, so it’s very exciting. I may blog about it afterwards 🙂

On my functioning- well, I can stand up for a few seconds on a good day (yay!) but there are so many things I can’t do or need help with. I can’t walk at all, I can’t lift anything heavy so need someone else to pour my drinks, I knock things over all the time (the M.E. has made my dyspraxia much worse). I need someone to brush my teeth, wash/brush my hair, help me with the top half of my clothing. I need my food cut up for me as I can’t do it myself, and often have to eat with my hands because holding a fork or spoon causes my hand to shake uncontrollably. I can self propel my wheelchair for a few seconds, but it’s normally just enough to get around the toilet or get through doors if needed, and if I try to do too much I end up stuck in bed. I can type, but writing is nearly impossible. This is all on good days- on bad days I can’t get out of bed, can’t sit unsupported, and sometimes need Johan to feed me or hold my cup to my mouth. I hate being so dependant on other people, but I’m starting to get used to it.

Okay, I think this blog post is long enough now, but I may do that 30 day song challenge thing I’ve seen on other blogs, starting tomorrow. No promises, though 😛

Danni

Crawling Penguins

College, Computers, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life, World of Warcraft

I’ve had an interesting time. I saw my GP. He persuaded me to try codeine again, at a higher dose. It worked… for the first 90 minutes. Then I had the most horrendous stomach cramps- worse than the pain I was already in. So I stopped taking it. A week later, I ended up in A+E because the pain was unbearable. The morphine I was given also gave me stomach cramps. Because the doctor was able to ask what they were like while I was there, I was able to describe that they were like spasms (I have very poor body awareness and also a bad short/medium term memory, so after they’ve finished I can’t remember what they’re like). She had a think, gave me buscopan and it worked! No more stomach cramps. She also gave me tramadol to last a week (well, until the next morning with a prescription for the week) to last until I saw my GP.

My GP took me off the tramadol and put me back on the codeine, with the buscopan. It works, but it turns out not all the tummy troubles were spasms- I still get a really sore, uncomfortable abdomen with the codeine, but without the spasms I’m not rolling around in agony. I’m taking it because my experiment of not taking it failed, but I’m not happy as tramadol didn’t cause the same problems, and worked better. I am aware that the tramadol shouldn’t really be taken with the other medication I’m on though as it can cause fits, so I’m being a good girl (mostly).

Seeing the doctor also made me a lot more ill. He had me trying to stand up and trying to walk, which exhausted me so much, I’ve been bedbound pretty much all the time since then. Yeah, thanks. I’m currently refusing to go back there, as it’s not worth making myself more ill over it. I need more codeine though, as I only had 2 weeks worth from the first time, so I need to figure out a way of getting a prescription without getting out of bed or using the phone. I suspect I may be writing a letter, then asking Johan to take it down there.

I did manage to get out of bed long enough to go to college last Monday, but I couldn’t concentrate and I really wasn’t well enough to be there, as now I can’t even sit up unsupported for a few minutes. I’ve fallen really behind on Computing, especially since my brain is really foggy. It is half term next week though, so I’m hoping to be able to catch up a bit. I also need to do a bit of catching up with Interface work, but that’s not quite as difficult so shouldn’t take too long, though if it’s worksheets I’ll need a scribe as I can’t hold a pen for much longer than to sign my signature.

Some good news though- my laptop has been repaired, and now works mostly okay. It needs a new battery (not covered by insurance) but it lasts long enough, and since I don’t move around much I can keep it plugged in. It also means that when my concentration comes back I can do some Computing work in bed, as the laptop has Windows on it and runs well enough for VB.Net. I can also play World of Warcraft on it. It’s not good enough for instances or raids, but it’s okay for chatting and dailies. It’s also lighter and cooler than Johan’s laptop, so better for me in bed. I’m really happy to have it back.

In World of Warcraft, I’ve completed my first level 85 normal dungeon! Possibly not the biggest achievement, but it felt good and went well. I could tell how healing has changed, and how I need to adapt for when I get to heroics and raids. I also went to ICC and did a ton of hardmodes, and achievements. It was a lot of fun, as with being all level 85 it didn’t require much concentration, and I already knew most of the fights. I’m hoping to be able to do the rest of it with the same group.

My mood has been a bit up and down, mostly because of pain and being fed up of being stuck in bed. Overall it’s good, I just get a bit sad or upset when I can’t do something, like sit up. Johan’s been pretty ill though- he had a breakdown, and his anxiety and depression got really bad, and he couldn’t speak. He’s back on medication to help with anxiety, and has been referred to the CMHT to get help overall. We know the main cause is being under so much stress from looking after me, but he needs a bit of help to get through this patch.

We finally got our Social Services assessments. The conclusion is I should be entitled to quite a bit of help with personal care, and hopefully Johan can get some respite. Eventually, I’ll probably get a personal assistant, who may be able to help me with getting to and from college. That would be awesome. We also have forms to fill in to move house, on medical needs. I need a property which has level or ramped access, an adapted bathroom, and that is generally wheelchair accessible, since it doesn’t look like I’ll be walking any time soon. When we have moved, I’ll be getting an electric wheelchair if my appeal for higher rate mobility is successful, which would be awesome, as it would give me so much independence.

I’m trying to think of things that I can do in bed, that won’t make me any more ill. I really need to spend less time on my laptop, and I can’t concentrate well enough to read, so I’m thinking of maybe getting some crafty stuff like beads to work with for when I’m not napping. I’m hoping that I’ll be able to get up and maybe go out soon. I’m on day four of not biting my nails, so I’m hoping to get some nail varnish and things to make them pretty 🙂

I’ll try not to take so long over my next blog post 😛

Danni

Where Danni is a Silly Sausage.

College, Computing, Danni, Physical Disability, Real Life

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.

Danni

On Disability and DLA (One Month Before Heartbreak)

Autism, Danni, Important Stuff, Mental Health, Physical Disability, Real Life

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.