"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
(I have permission from Johan to talk about his mental health on my blog.)
Today I’ve had an enjoyable day. Woke up this morning, got washed, dressed, and hair done (in a French plait :D) when lovely Icelandic carer came, then fell asleep again until this afternoon. This afternoon I went on my computer for a short while, and have been reading twitter and blogs while chatting to Johan about things. This evening we went to the MetroCentre, where I had makeup applied and then bought it all in Boots, followed by buying chocolates in Thorntons and going to Nandos for a lovely meal with Johan. We came home, and Johan gave me a lovely bed bath then a massage.
All that is very nice, and though I’ll pay for the day out in a day or two, it was worth it.
So what on earth does this have to do with World Mental Health Day?
I’m lucky- apart from some anxiety issues, I no longer have any severe mental health problems (I did have severe depression and also some psychotic features such as paranoia and hearing voices). I’ve been mentally stable for over 18 months, and stopped taking the last of my psychiatric medications about a week and a half ago. I had been suffering from depression for nearly 12 years before that, so I am extremely grateful to have reached this level of recovery. If it weren’t for the M.E. there is no reason why I wouldn’t be either at university or in a job right now.
Johan, on the other hand, is not so lucky. He’s currently suffering from bad depression. His brain is telling him nearly constantly to hurt himself. He is getting thoughts of suicide. His mood has dropped a lot, over the last fortnight and especially the last few days. Going out this evening and giving me a bed bath were distractions for him, but he was unable to enjoy them as he would have done if he was not depressed. He has asked me to stop him going into the kitchen and to stop him taking my medications as he’s worried that he will hurt himself. I am very worried about him.
Tomorrow we both have appointments with awesome GP, at about the same time. My appointment will be for discussing how I’m getting on with the tramadol (pretty well- it takes the edge of the pain most of the time) and probably talking about having to call an ambulance out on Saturday night (I’ve probably pulled a muscle in my chest, and it’s nowhere near as bad as it was). I’ll talk about that more in another blog post.
Johan’s appointment will be tell the doctor how Johan is getting on mood wise. He was started on sertraline a couple of weeks ago, when we told the doctor his anxiety was getting worse. Johan at the time wasn’t admitting that he was getting depressed again, so I didn’t mention it to the doctor. The medication takes a few weeks to get working, and it’s been making Johan very lethargic among other things, so we’ll be telling the doctor that. We’ll also have to tell the doctor about all the things I mentioned before. I’m hoping that awesome GP will be able to do something to help, though I’m not entirely sure what. Johan, as he’s depressed, is convinced he’s evil, he can’t be helped, and that he doesn’t deserve help. I am aware that this is depression talking, as I used to to think the same way. I do think he can be helped, and will be as supportive as I can be to try and get him that help. It may be that he will need a short stay in hospital, as I am unsure of our ability to keep him safe. Hopefully it won’t come to that.
So there we go. Today, on World Mental Health Day, I’ve been not doing anything to try and raise awareness, but more trying to cope with the mental health problems that have been hurting Johan, while at the same time have been grateful for how mine has improved.
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.
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.
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.
I have mentioned before that I am autistic. This is a part of who I am, the same way that being very pale, having blue eyes and liking shinies is a part of who I am. Today there is a “Communication Shutdown” day, where people taking part don’t use Facebook or Twitter for a day to try and understand the isolation and social difficulties that being autistic brings. The whole thing confuses me, as the social difficulties I have due to autism are much less apparent when I’m on the internet, and especially on social networking sites. I am not upset by the event, just think it’s missing the point a bit.
Before I discovered the internet (back in January 1997, so just around the massive boom in usage) I was very socially awkward, and found it very difficult to make friends. I spent most of my time reading, and playing in imaginary worlds in my head (mostly based off the books I’d been reading). By this point I was 10 years old, and had been aware that I was “different” for a couple of years… and so were everyone else in my class, which lead to bullying.
When we got the internet, I went into my first chatrooms, and suddenly I’d found an easy way to communicate. Text has always been easier for me to understand than speech (I was able to read before I was 2, and was never without a book), and here was a way for me to be on a level playing field with everyone else. I made friends with people from all over the world, of all different ages, and I could share with them my experiences, and talk about whatever I wanted to, without the worry that I’d be misunderstood or that I’d misunderstand what they were saying. I also found other people with my interests (books, science and maths at that point) and being able to discuss them without making people bored was amazing.
A few years later, I’d created my first websites (personal ones, and ones on Star Trek) and even started my own blog. I had lots of friends online that I spoke to through emails, chatrooms and instant messaging programs. I even had romantic relationships, based on common interests such as Star Trek (a massive obsession for about a decade, and still a big interest). It didn’t matter that I was awkward in real life, here I was able to talk, and relate to other people without the barriers that real life communication poses.
When it was first suggested that I could be on the autistic spectrum, I didn’t really believe it. I knew I was dyspraxic, but I was not like my sister Becca or my childhood friend D at all (the only people I knew in real life on the spectrum). I turned to the internet, and read the blogs and websites by autistic people, and discovered those who thought in a similar way to me, who had similar difficulties in reading people and not knowing the hidden social rules, who did things I did like repeating words over and over just because it felt and sounded good. I came to accept it, and finally was diagnosed when I was 21.
There are many good things that have come out of my diagnosis, a lot of them related to the internet. I discovered Second Life via the Autistics.org website, and met my husband on there (so much for “autistic people can’t marry”). I’ve made a lot of friends, both autistic and non-autistic. When I’m so overloaded I can’t speak, I use instant messenger programs and email to communicate. I have friends who are non-verbal, who use social networking sites in the same way that others do, to talk to other people.
There is the mistaken belief by some that autistic people (especially non-verbal autistics) cannot communicate. Everyone can communicate. The internet allows a large set of autistics to show that they can communicate, and have something to say. There are some autistics who cannot communicate by internet or speech, or other conventional methods, but even they can communicate in some way, though it may be hard for those around them to understand. When we speak, we want to be listened to.
As for the YouTube video? Apart from it being an excellent example of how autistic people can communicate (Red Shirt Guy has Asperger’s Syndrome- response video with that mentioned here), when I watched this during Blizzcon I thought this was the best question during the Quests and Lore Q&A (the audience liked it too). He’s now going to be in World of Warcraft itself, as the Wildhammer Fact Checker. Win.
I will be blogging about normal stuff soon, but first a public service announcement.
My good friend Vicky is planning on swimming across Windermere to raise money for Mencap’s Getting it Right campaign. She’s mad, but this is a very important cause so I encourage you to donate at http://www.justgiving.com/gettingitright. As I am not feeling wordy here’s some stolen stuff about why you should give.
As a result of receiving unequal healthcare, people with a learning disability are dying when their lives could be saved.
The Death by indifference campaign began after six people with a learning disability died in NHS care. Their families were not getting answers about why their loved ones had died, or why they were treated so badly because they had a learning disability. They approached Mencap for help.
As a result of Death by indifference an independent inquiry was carried out, which makes strong recommendations for change to give people with a learning disability equal healthcare. The Health Ombudsman also reported on the six cases.
Mencap wanted a judicial review to challenge some of the ombudsman’s findings, but this was denied in the High Court in December 2009. However Mencap was granted a judicial review in the Court of Appeal on a narrower point of law in July 2010.
In her findings from the six Death by indifference cases, the ombudsman did not find ‘service failure’ when reasonable adjustments were not made as required by the Disability Discrimination Act. She still found that the doctors acted within a range of reasonable practice.
However, Mencap believes the ombudsman should have concluded there had been service failure.
The judicial review is based on a narrow but important point of law, so even if we win the judicial review the six original Death by Indifference cases will not be affected. However, it would have significant implications for the ombudsman when she makes decisions on future cases, involving healthcare professionals making reasonable adjustments to comply with the Disability Discrimination Act.
