Category: Mental Health

Danni

Playing With Technology

Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft

I’m still not doing great. Still bedbound, still can’t be propped up, still ridiculously light and noise sensitive, needing sunglasses to use tablet and feeling incredibly ill if the lamp is turned on for more than a few seconds. Speech still hasn’t come back, making this the longest period of being non verbal that I can remember (before ME it usually lasted a few minutes to a few hours at most, and the more than a few minute episodes were extremely rare). Hardest is not being able to cope with Johan in the room with me for very long. I talk to him using Google Talk but even hand holds are limited.

It could be worse though. I can chew so can eat solid foods, and roll over independently. Both are exhausting so I have to be careful, but it means I can eat what I want within reason and adjust my own position when uncomfortable. And I can use my tablet, which means I’m able to communicate and have something to do, though I have to be careful with it as well as it’s so easy to overdo it.

Since I last blogged, I’ve been playing around with my tablet quite a bit. First of all I changed roms, from an Ice Cream Sandwich (4.0) one to a Jelly Bean (4.1) one. I think the last one was either Cyanogen Mod 10 or based on it, while this one is called Eos. The last time I tried upgrading to Jelly Bean I quickly reverted back due to the amount of bugs, but this time I’m very happy. It supports the same theme manager as Cyanogen Mod so I can use the same purple and black theme I had before (trying to find themes for tablets is frustrating) but to my delight this rom also allows me to change the status bar at the bottom from black to purple, something I’ve been wanting to do since I first got my tablet.

I’m liking Jelly Bean a lot. The more detailed notifications are awesome, and I’m still finding little improvements while playing with it. Some of them might be the rom rather than Jelly Bean itself, but still I’m enjoying it. I’m still getting occasional reboots and touchscreen issues, but I think those are more to do with how many times the tablet has been dropped than anything software related. I have insurance for accidental damage but it requires a phone call, changing all my details as I’ve moved and living without my tablet for a bit. I’m waiting until I’m out of this relapse before sending it for repair.

As well as updating my rom (well, Johan did the actual changing, I just did the backups, restoring and setting up) I’ve been playing around with apps on my tablet. First of all I got the My Little Pony game (also available on iOS). I was really enjoying it when I decided to change roms, and was even considering putting some real money into the game for some extras. I backed it up carefully, restored it back on the new rom and discovered it had reset the game, as the saves see based on the device ID. Gone were any thoughts of paying real money into the game, and I was considering just leaving it (it’s a clicking game like Farmville and similar on Facebook) when I discovered on Reddit it was possible to cheat and get lots of gems (the premium, pay for currency). Since gems would let me quickly catch up to where I was, and I had been enjoying the story even though the game wiping was bad and Gameloft massively overcharge for things bought with real money (it’s possible to get gems while playing, but it’s very slow and to get all the Mane 6 ponies would take 2 years, and a lot longer to complete the game’s storyline without paying) I decided to cheat. And it was fun and a great, very low spoon using distraction (not much movement, simple gameplay and very little thinking required).

I also swapped my main browser from ICS Browser+ to Chrome. There are some things that I preferred in ICS Browser+ and it was a bit faster loading most webpages, but Chrome helps by being more compatible with the sites I like to use, including my online banking one (I can actually log in now). Overall it’s a positive change, though if anyone knows how to access the history in Chrome for Android, please let me know. (Edit: found it. You type Chrome:history into the address bar and it’ll show it. I’ve now bookmarked it so I don’t lose it again.) I do like being able to access the websites I was using on my desktop and laptop very easily.

Today I decided to swap keyboards. I’d bought SlideIT for 10p last year, and since then I used it as my main keyboard. It is very pretty but unfortunately it no longer works as well as it did. Recent updates have made it pretty much unusable. My hands are very jerky at the moment and while previously it had been able to guess what I meant to type, recently it has been way out. On top of that, one of the recent updates broke the dictionary so it was no longer recognising common words. It could be fixed temporarily by resetting the dictionary but that meant losing all my custom words. It’s frustrating as I’d really liked it, and the themes are very pretty (there are several purple ones, plus Christmas ones and others I liked, and a theme editor) but as I use my tablet for communication when I can’t speak I need a reliable keyboard.

I’ve swapped back to Swype. It’s still in beta and has to be downloaded from the website, but for my use it’s much more accurate and has much better word prediction. This entire blog post has been written with it, and as I’m not having to correct every other word it’s a lot faster and easier. It’s ugly compared to SlideIT- the prettiest theme is a light one with magenta highlighting and trace pattern, which is still kinda ugly, but it is so much easier to use. I’m still making a few mistakes as I’m used to SlideIT and it has different quirks, but I’m sure I’ll get used to it. I’m still annoyed that SlideIT has gone so downhill though.

On a more minor note, WordPress has released version 3.5 and I’m liking it. They’ve improved the dashboard for use with touchscreens, and it is so much better for it. I’d previously only been able to blog on my tablet in Chrome using the full screen mode as once I’d written more than the normal sized text box could hold it would start playing up, but that’s fixed now. Accessing menus is a lot easier, and I even found a tick box for snow built in 🙂 I’ve not even tried the new media upload section, which has apparently been completely revamped, but I’ll be trying that soon as I’m wanting to upload a photo later in my blog post.

I love technology. I’m so lucky to live in an age where I can stay in contact with the world from bed, while so ill. My tablet keeps me sane, and means I’m able to communicate and do what I can despite being very ill. I can read books (I read an awesome one called Realand the other day- I’m buying it for Sammie as it’s excellent and as it’s a children’s book was good for broken brains), I can talk to Johan and on Twitter, I can look at pictures of penguins and other stuff, I can do my Christmas shopping and help Johan with the finances.

There are times when I can’t use my tablet. Sometimes I’m paralysed or unable to move enough, or I’m too light sensitive to even look at the screen with my sunglasses on. For that reason we’ve started putting together a communication book for me that I can use when that’s the case. If I’m unable to look at it and indicate what I’m wanting to say myself, then Johan or someone else can read it out to me and I can indicate the correct response however I’m able. That might be through squeezing a hand, gesturing, blinking, or if I’m completely paralysed by breathing heavily. Our system is one for yes, two for no, three for I don’t know/maybe, four for something else. We’ll be including the instructions in it so if I’m I’m hospital or a care home again I’ll still be able to communicate. I got the idea from Mog’s talking book from Behind the Child. It’s a low tech solution but anything that enables communication is good. Johan is also trying to turn it into an Android app so that he has it always on his phone (in case we don’t have the paper version when we need it) but also so I can use it on my tablet when my cognitive abilities are too poor to manage typing, which also happens more frequently than is helpful.

If my speech doesn’t come back soon, or continues to be unreliable, I think we’ll be asking for a referral to a speech and language therapist. Our communication book will be good in the meantime though. I’m hoping they’ll be able to help me discover the best form of AAC for me, rather than me just guessing and cobbling together my own solutions (though I’m definitely grateful I can do that with Johan’s help). We also saw the dietician and she’s prescribing me some supplements as my food intake is so poor and my ability to manage solid food is unreliable. She’s also wanting to have the carers help with food preparation as some of the reason I’ve been eating so poorly the last year is Johan not always being able to feed me when I’m able to eat, due to his own disability and because of my sleep reversal. We’d been thinking about that anyway, so we’ll need to figure out how to ask social services for it. We need support to access support, which is kinda an issue.

Giles, looking like he's plotting
Giles, looking like he’s plotting

Unfortunately things haven’t been going brilliant for me. Last week my gorgeous cat Giles was put to sleep. Vicky and I had adopted him when we were living together, and though he’d stayed with Vicky rather than me (I was uncertain whether I’d be able to look after him properly and Johan has a very severe cat allergy and values breathing) I still loved him very much. He was an older cat when we got him, FIV positive so needed to be an indoor cat, but he was the right choice for us. He was a rather laid back cat, but he adored food, often finding ways to get extra feedings, including from our next door neighbours at times. He also wanted our human food, especially pizza. I won’t forget him waking me up at 5am demanding food by jumping on my bed and meowing.

In the last few years he’d had some health issues. Problems with his eyes meant he went blind, but he still enjoyed his food and showed he wanted to be around. Last week though he started having more issues, was in pain and no longer had the same interest in food. The kindest thing was to let him go, but it was hard for Vicky, her parents and for me. I’ve been pretty upset since, though trying not to make me any more ill.

A few days ago I also got news that Glamourpuss (RL name Trevor), one of my guild friends in World of Warcraft, had lost his fight with cancer. Although we weren’t best friends, I’d spent many a time playing and chatting with him, and it’s hard to believe he won’t be logging in again. He was an awesome member of the guild, and I know I’m not going to be the only one who misses him.

I’ve also not been coping very well with this relapse. The pain has been unbearable for weeks and it’s only because I know hospital will make me worse overall that I’ve not gone in for painkillers. I even spent some time thinking of if I could get something from the local drug dealer as I was feeling that desperate. I’m not going down the illegal drug route (I’m bedbound, unable to speak, and the only person I know who does drugs is the guy upstairs and I’ve only heard him talking about cocaine, which isn’t going to help. Also I don’t want to be funding crime and would rather get my drugs from a source that’s reliable, but I sympathise a lot with those who go down that route) but it’s scary that I was considering it. Johan and I have come up with a plan. My GP is next in on Tuesday, and he’ll speak with her then to see if she can help. If I need it sorting earlier, we’ll contact another GP at the surgery or out of hours and get help that way. A+E isn’t an option as I’m too ill to get there and cope with the lights, sounds and things. Knowing it’s going to be sorted is making it easier to cope with, though it’s still hard.

We’ve bought a small Christmas tree for my room. It’s purple tinsel, and we’re going to put it on a box in the corner so I can see it. It’ll take a few days but it’s something to look forward to. Johan also got some decorations for my room. I’ve been having some of the chocolates from my advent calendar, though not every day due to feeling too ill and forgetting. It has penguins on it and my name. Johan also got mince pies and other goodies from French Oven, one of our favourite shops in Grainger market. People have also been far too nice to me and have been sending me cards, presents and linking me to pictures of penguins, which has cheered me up a lot while I’ve been feeling so poorly. I’m very lucky to have Johan and my friends.

I still have Christmas shopping to do. I’ve got to get presents for Sammie for Christmas and her birthday, and get some goodies in so we have a nice Christmas. Johan was feeling overwhelmed by the thought of having to cook Christmas dinner so I’ve told him we’re having a takeaway that day. It can be our tradition 🙂 I’ve bought a present for my Spoonie Secret Santa recipient but need to get it wrapped and posted next week (I think I’ll need Johan to help there). I was wanting to get and send presents and cards to my friends and those who have been so nice to me, but I’m too ill to do so. As we’re waiting to hear about my DLA (runs out next month, got confirmation they’ve received the form but nothing else) we can’t go too mad but I have planned to make sure we can eat and pay bills for a bit if needed. I’m not allowed to worry about it until after Christmas unless they ask me to have a medical beforehand.

This blog post ended up a lot longer than I was expecting, and took a couple of days to write. I’m not used to stopping in the middle of blog posts to sleep and rest 😛 It’s been a tough week and I’m still very poorly, but I”ve got my friends, my family, penguins and God to keep me going. It helps.

Danni

I Am Worthy

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

When I was depressed I felt worthless. All the insults and mockery I’d got as a kid from bullies (both children and adults) I believed. When I was at my most mentally ill, I genuinely believed that I was the most evil person in the world, and that everything that was wrong with the world was my fault. No-one was able to convince me otherwise at the time, though my friends and Johan did try.

It has taken me a long time to regain belief in myself. It’s still a bit shaky- when I’m having a bad day the old thoughts and beliefs come back into my head, and it’s hard to remember that they’re not necessarily true, even if they were said by people I respected or loved. With help though, it is getting easier, even on the bad days.

I want to understand everything. As a kid I used to read encyclopaedias, trying to learn everything about everything. As I’m autistic, I have to learn about social interactions and customs through mimicry or study as none of it comes naturally to me. Because I put so much effort into trying to understand, I value what I’ve learnt much more than I think I would have if it had been easy.

I was told I was intelligent, but lazy. I didn’t believe the intelligent bit as I felt stupid, as that’s how I was made to feel every time I misunderstood something or said or did the wrong thing. I didn’t think I was lazy as I was trying so hard to do what I needed to do, but I must have been because I struggled to get homework in, my legs got really tired and ached if I walked long distances, and I couldn’t write fast enough. Along with other insults, put downs and constantly changing expectations that go along with living in an abusive household it wasn’t that difficult to see why I developed depression, which I was more likely to get anyway because of my (at the time undiagnosed) autism that were causing my other issues.

Now, I know I am worthy. I am worthy of love, of protection, of support. My worth has nothing to do with what I can or can’t do, it’s because I am a person and every individual is worthy. The current government may say I’m a useless scrounger who should probably be dead because I can’t work, but I know that it’s not true, and I have Johan and my friends who believe in me. I’m lucky to have this ability to learn easily that some people call intelligence, and I want to use it in ways that can help others if I can. But that still has no say in my worth. I’m worthy just because I am me, and there is no other Danni who is like me, or will be again.

We should help those who need help, because they are humans and that is what they deserve. Someone who can’t work due to disability or illness is not worth less than someone who puts in 50 hour weeks, as a person’s worth isn’t based on what they do, it’s because of who they are. Even the severely disabled, that may struggle to communicate in ways that those around them can understand, are worth loving and being supported, as they are humans and they bring themselves to the world.

I’m very lucky to have Johan and friends who love me, who like me for who I am. I might be odd, do some things that people consider strange, might be severely disabled and need help in every area of life, but there are people who love and care for me and want me to have as good a life as possible. I want the same for everyone else, and I love Johan and my friends back just as much. I may be terrible at initiating and keeping in contact with people, but I try and I think my friends understand. If there’s a way I can help my friends, I want to do it as they deserve help just as I do.

I want to live in a society where people get help based on need, not money. Where supporting those who need help is done happily as that’s what a good society does, and that help is provided in such a way to ensure that every person can contribute as they are able. And that may not be financial contribution through having a job- it might be through the arts, through friendship, even making someone laugh by getting up to mischief. Unfortunately at the moment the UK is going in the opposite direction, as money is more important than supporting those who need it. I know I am worth supporting, but it seems not everyone agrees.

 

Danni

Johan’s Isolation

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

With his permission (and at his request) I’m posting about Johan today.

Johan is my husband. We met in Second Life, introduced by a mutual friend, and we met in real life during a Plurk/Second Life meetup in London. At the time, everyone there (except Johan) could tell that we really liked each other and were going to get together. I asked him out in the Science Museum in London when we met up again (he was there to see Eddie Izzard, and I went there as he was) and we became a couple. Luckily for me, he’d been wanting to ask me out but was too scared to. I wasn’t wanting a relationship at first, having just come out of a long term one with Sammie’s father, but I liked Johan too much to pass him up. As we’re both autistic, it was probably the most awkward event ever, but it turned out great 🙂 (By the way, Johan is the name he used in Second Life. His real name is John, but even his family are okay with me calling him Johan.)

Johan moved in with me during the summer of 2009, as I needed someone to live with me as I can’t manage living alone (my friend Vicky had lived with me up to then, but had moved to be closer to her job) and although he wouldn’t admit it at the time, he couldn’t manage living alone either. He understood that I needed help and care, but at the time it was for mental health reasons. He’d previously been at Hull university, and decided to take some time out of uni to get settled living with me (I was at college) and was going to go back the next year, as at the time I needed more care at night than during the day. Unfortunately I then went and got M.E, my needs changed and he’s not been able to get back to uni.

So we fell in love, Johan moved in, we got engaged (my brother Martin asked us when we were getting married when we were eating in Wetherspoons, and we mutually agreed that getting married was a good idea as it was obvious to both of us that we wanted to spend the rest of our lives together), then we got married. During this time my mental health improved but my physical health got worse. Johan’s caring role had to change as my health did. Lack of help (despite asking for it and warning social services and the mental health team that it was coming) meant that in early 2011 Johan had a breakdown, I went into care home, got neglected, but then we finally got carers to help out (which eventually became more of a problem than they were helping, but then we moved again and it’s going a bit better this time, for now).

With Johan moving up here, he had very few friends in the area. Initially Colin spent quite a bit of time at ours, which meant Johan had someone to play video games with and chat about men’s stuff, but now Colin is married with children and we’ve moved quite far away. I’m happy talking to my friends on Twitter and Facebook when I’m well enough to, but for Johan that kind of interaction isn’t enough. I’m also more outgoing of the two of us so make friends a bit easier (we think it’s probably because I’m a girl :P).

The isolation is getting to him. He likes going to the Linux User Group when he can, and the people there are really friendly, but none of them he’s become the kind of friend he’s wanting (to play video games with and go out with when he can). He goes to the Autism North East social events, but he got involved with the committee side very quickly and again, hasn’t met anyone that quite clicks with him, even though most people there are friendly and pleasant. It doesn’t help that he’s rather shy, and his autism makes socialising and making friends really difficult. University would be great for him, but at the moment we don’t have the right support for me. Most of his close friends are elsewhere in the country, so he rarely gets to see him.

I don’t know how to help him. I’m not sure where geeky late teens/early twenties men who like computers and video games hang out. His limited time because of looking after me doesn’t help much, as I can’t be left alone for long (I’d like to change my respite to something that would fix this, but that’s quite low on the list of priorities right now). Ideally his friends would be in our local area, so they could hang at each other’s houses and he’d be close enough to get home if I need him if he wasn’t here, and they’d be able to come here.

Any suggestions? He does like his Twitter and Facebook friends, and those he met at school and university and elsewhere, but none of them live here so he can’t pop over. A teleporter would solve all these problems (and more) but they don’t exist yet. He doesn’t drive and so he’s limited to the Newcastle/Gateshead area. He enjoyed Newcastle Barcraft, but that’s not happened for a while, so anything like that would be a good starting point. He’s also terrible at keeping in contact with people when he has met them, so that needs to be taken into account (I try bugging him but it doesn’t work very well 😛 ). One note- he doesn’t want to play Call of Duty 😛

Danni

The Differences Between Depression and M.E

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

I have experience of both severe depression, and severe M.E. For a period of time, my depression and the beginning of my M.E overlapped, so it was hard to tell them apart until the depression lifted. There are a lot of similarities between the two conditions, but there are also differences. These are purely the ones I’ve experienced- other people are different, have different symptoms and experiences. Both conditions are serious and require help. (For those who are interested, I’d pick severe M.E over severe depression if I have to have either. My quality of life is much better, even though I can do less. Other people may think differently, and some people have both conditions at the same time.)

When I had severe depression, I was tired all the time. Getting out of bed was difficult. Walking to the shop seemed impossible. Getting washed and dressed frequently didn’t happen. Eating only happened if someone else reminded me. I ached all over. I didn’t want to do things. I had thoughts (and voices) telling me what an evil, despicable less-than-human being I was and that I should just kill myself as the world would be better off without me. Sometimes I acted on those thoughts. I frequently spent days in bed, not doing anything. I couldn’t care about anything, especially not myself. The things I used to enjoy (even penguins) didn’t make me happy any more.

It took a long time for me to get the correct treatment for my depression. I was depressed from age 12 to nearly 24, so almost 12 years (at the time, half my life). I had multiple stays in the local psychiatric unit, most of which were helpful. I tried lots of different medications, and discovered that not only was I very sensitive to them but most of them didn’t work the way they were meant to. I had psychiatrists that tried to fit me into boxes that weren’t right, and then would try and squish my experiences into that box. Luckily, I got diagnosed with autism (which explained most of my difficulties from childhood) and then got a psychiatrist who listened to me properly, and we worked together to work out the right medication for me, which ended up being 50mg trazadone and 50mg quetiapine. Both of those are low doses (see oversensitivity) but it worked both against the depression, and to me more importantly, against the voices I was hearing that were making my life a misery. I did have a couple of bad episodes even on that medication, but with help from my psychiatrist, Johan, my friends and my own discovering of who I was and how I could help myself, we got through it.

At the end of my last episode of depression, it cleared up completely. I started feeling properly happy again. I started caring about things. I wanted to live (previously, during the better stages that I thought at the time were not depression, I was ambivalent about death. I now know I was still depressed, just less so). The future started looking a lot brighter. But my ability to do things was decreasing. My legs were giving up on me when walking or attempting stairs. I was sleeping lots. If I went out, I’d feel horrendous for several days afterwards, and would have to stay in bed. I was having really bad pains in my arms and legs, that were nothing like the aches and pains I’d previously had, so I went to see the doctor, and eventually (after a diversion caused by a low thyroid test that on repeat came back normal) I was diagnosed with M.E. By that point I was needing a wheelchair for all but the shortest distances, and by January I could no longer walk at all.

Looking back, I could see when it started. I got swine flu in August 2009, and after that struggled physically more than I had before. When I attempted college in September, I was having to sit down when I got to the top of the stairs. I was really struggling to wake up in time to get there in the mornings. The exhaustion wasn’t being improved by activity. The pains in my arms and legs started. I had originally put all this down to depression, which is why I didn’t see a doctor until it had lifted.

So what are the differences? These are the main ones I’ve noticed.

  • In depression, I feel exhausted all the time, but going out and doing things will make me feel better (or at least not any worse). I wouldn’t be any worse a couple of days later. With M.E, doing stuff will make me worse, but it sometimes takes a couple of days to feel the full effect.
  • In depression, I had aches and pains constantly, but they were bearable (they just didn’t help with my mood at all). Exercise would make it feel a bit better. With M.E, the pain I get in my arms and legs especially (but also the rest of my body) is excruciating at times, and exercise makes it worse.
  • In depression, even though getting out of bed and doing things was an enormous challenge, when I did it my body would work, though very slowly. With M.E, my body just completely gives up if I try to do more than I’m capable of, and I get a lot of extra symptoms (some of which are scary, like my heart racing, chest pain and fainting).
  • Depression, by definition, comes with a low mood over an extended period of time. In M.E, I get all sorts of (normal) moods, and generally I’m quite happy these days (though I have down days, it’s nowhere near what I was like with depression.)
  • With depression, I was suicidal most of the time. The best I ever got was not caring if I died or not. With M.E, I’m never suicidal unless the pain is unbearable, and then once the pain is treated I no longer want to die (the suicidal feelings are purely about stopping the pain).
  • With depression, I heard voices telling me how evil I was and that I had to kill myself. With M.E, I’ve only hallucinated when I’ve been in extreme amounts of pain or had morphine (and the morphine ones are quite pleasant 🙂 )

The emotional pain that comes with depression is worse than pretty much anything I’ve experienced. There’s no quick treatment, and my quality of life was exceptionally poor. Though I was sometimes able to give an outward impression of being okay, inside I was suffering greatly. My M.E has been a lot less invisible, probably because I was getting worse so quickly and needed mobility aids (first crutches, then a wheelchair) and because I often look ill. In both cases, you wouldn’t see me at my worst because I’d be in bed, but the reasons are different.

I still have anxiety and panic attacks, though less panic attacks since I’m unable to get into as many situations that trigger them (travelling on the bus by myself was the worst- now I rarely go on a bus and when I do Johan goes with me as he’s pushing my wheelchair). It’s not fun, and I’m still looking for ways to deal with it, though some of it is related to being autistic (especially my extreme dislike of change). With depression I had a lot of paranoia and things that made it worse.

Both illnesses are serious. Both have a stigma against them. My belief that M.E isn’t psychological (though it definitely has psychological components, like most chronic illnesses) isn’t due to not wanting the stigma of mental illness, because I’ve had one. Between the two, for me the depression is worse. Although my quality of life is severely affected by having M.E, I have the will to do things (even if not the ability) and I’m able to be happy. With depression I didn’t have that. I’m more scared of getting depressed again than of my M.E getting worse (and  I’m not saying that lightly, having experienced very severe M.E).

M.E can cause depression, as it restricts life a lot, even at the milder end (those with mild M.E often have to give up hobbies or a social life to manage work or education). I’m lucky that I don’t have depression now, and I think a lot of that is due to my support network of Johan and friends (most of whom I’ve only ever spoken to online). I’m pretty sure if I didn’t have the internet then things would be different. I have heard some people say that if someone with severe M.E doesn’t have depression there must be something wrong with their head, but I don’t believe that as some people with severe M.E (including myself) are able to avoid it. Those with depression certainly aren’t failures, and it’s not their fault, it’s probably just a difference in circumstances.

I hope that more effective treatments for both conditions will be developed so that eventually no-one has to experience either. I have friends with depression (and other mental illnesses), with M.E, with both and some with other conditions (and even some with none at all!) and I love them all. You can’t pull yourself out of either, just like you can’t walk a broken leg better. Hopefully they’ll be taken seriously soon.

All of this has been my own views and experiences. I might have made mistakes or omissions due to brain fog or lack of knowledge. If I’m wrong or you think differently, feel free to correct me 🙂

(By the way, autism isn’t an illness. It’s a neurological difference and disability, but it doesn’t make the autistic person ill. Hearing it described as one annoys me.)

Danni

I Love The NHS

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

I love our NHS. Having a national health service that provides services based on need, rather than ability to pay is one of the things that makes the UK a great country. I know that if I need to see a doctor, a nurse, a specialist, or go into hospital I don’t have to worry about the cost. Some people have to pay set charges for prescriptions and dental care, but because I’m on a low income benefit (and can’t get out by myself) I don’t even have to pay for them.

The NHS is not perfect. Waiting times can be a bit long, there aren’t enough nurses in hospitals, some of the targets and paperwork mean that the professionals can’t do their jobs as effectively. Some places are just not up to a reasonable standard and need to improve. Individual doctors or other professionals may not be good enough, or have other problems. My solution to that would be to spend more money in the areas that matter and listen to the doctors, nurses and other healthcare professionals on what changes are needed, and make the sure the money is there. The government’s solution is to privatise it, bit by bit.

I’ve mostly had very good experiences in the NHS. My current GP is excellent, and although she may not know exactly how to help me (she’s admitted she knows very little about ME, especially severe ME) she’s willing to learn. She asks me what I would like her to do, and is quite happy to arrange anything that is reasonable (contacting my specialist, referral to an OT and a dietician). Most of my previous GPs have been excellent as well, which I’m very grateful for.

Most nurses have also done their best for me, and have been helpful and caring while providing whatever treatment I’ve needed. They may not always get it right, but nearly all of them try. The same with other healthcare professionals- most really want to help me, treat me well and care. My specialists have always been good at their jobs, and I’ve been reassured that they can help me, even with something as complex as ME.

I’m going to especially mention ambulance people here (I get confuzzled by the different types). Every single ambulance person, without fail, has been brilliant. They’ve always done their best to make sure I’m comfortable, helped me whenever I’ve needed them, and reassured me on many occasions that I’d done the right thing having them come out. I know they do a really hard job and yet they still care, can joke with me and treat me like a human being.

I’m not the easiest patient to treat. My autism makes communicating difficult, and can make it hard for me to give the information that is needed to help me. I often have symptoms that I can’t always pin down. I don’t react to pain or other things the way that people expect. I have often had strange reactions to medication, sometimes after taking them for a while. ME is a complicated illness with lots of different symptoms are varying severity and also makes the communication difficulties I already had worse. Nearly all the professionals I’ve dealt with have tried to work around these, and still treated me like any other patient.

I have had some bad experiences, and some professionals that haven’t acted as they should have. There have been some events that just shouldn’t have occurred. However, this is not a failing of the NHS as a whole. Mental health services in particular need to improve. This isn’t justification for privatisation however.

I’m scared for the future. Right now, I know that if I need to see my GP, she’ll come to my home if I need her to and she’ll do her best. If I need to go into hospital, I can do so and if needed a brilliant ambulance service will take me there. I don’t have to worry about my ability to pay at all. With the NHS being slowly privatised, that may not be the case in the future. The NHS needs more money, not cuts. It shouldn’t be run as a business.

I’m lucky. The NHS has saved my life and the people working within it that treat me are doing their best to help me be as well as is possible. I’m not sure that will be the case in the future.

 

(Health update- I ate a yoghurt and a banana at bit earlier as the hunger was getting to me, and I felt dizzy and weak from low blood sugar. I got severe indigestion and nausea, but no gallstone like pain. That was still the case after having some Revels as well. I think my body is trolling me. I’m hoping that the gallstone like pain has gone completely now, but will see how things are tomorrow as I’ve had an anti nausea tablet and it’s making me very sleepy.)