Month: November 2012

Danni

It’s the Little Things

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

There are lots of things that I want to do that my M.E prevents me from doing. I had to give up college (after getting an A the year before). Walking hasn’t happened for a long time. I want to go see Johan’s family in Yorkshire but I’m no way well enough to go that far. Going to see a film, or a play, or a comedian are all too much. The bigger things I can get over, but the littler things, they’re harder.

I really want to wash my hands in a sink. The last time I managed it was when I was in a disabled toilet, so probably August. I can’t get to the one in my bathroom. I’ve been using baby wipes, and although they’re okay in the short term I want to use soap, hot water and a towel.

I want to use a proper toilet. I can’t use ours as I fall off. Even using the commode is dangerous as I faint if I sit up too long, but it’s preferable to the alternative, which is using a bed pan. Using a toilet with a flush that doesn’t need cleaning as often would be wonderful.

I want a bath, or a shower. Baths are wonderful, they are relaxing and they are great for pain relief without drugs. I like adding bubbles. The last time I had a bath was January or February. We don’t have a bath in our new flat, but I can’t use the shower at the moment as we don’t have a shower seat. We tried using the bath lift instead but it didn’t work that great and  is too dangerous to repeat. That was a few months ago and was the last time I was able to have more than a wash in bed.

I want to go out. Before the last relapse I was managing to go out once a week, to the library or into Newcastle to look around the shops. I went on the bus and the Metro and it was awesome. I got to see the bridges over the Tyne, could people watch, and eat out. It was awesome. I’ve not been well enough since then, which was in August.

I want to wear jeans. Jeans go with pretty much everything, and they look good. I can wear trainers or high heels and they go. And the texture of them is completely unbearable, and the pockets and sticky out bits dig in when sitting in my wheelchair.

I want to see my friends. I’m too ill to go out to see them, and I’m also too ill to have them visit most of the time. Even when I’m well enough, most of them are too far away. In the last few months, the only people I’ve seen are Johan, my carers and my doctors.

I want to be able to watch TV shows again. I have loads of telly shows I like- Doctor Who, NCIS, House, Glee, Law and Order SVU. I’m behind on all of them, some of them now by two seasons, as I’m just not well enough to watch them. I can’t follow plots and I get very confuzzled. I can watch My Little Pony: Friendship is Magic, but that is with difficulty and I need to rest to recover afterwards.

I want to be able to go into the kitchen and choose something to eat for dinner. To go into the kitchen, I need to be well enough to get into my wheelchair, and Johan has to push me. That could be doable, but then I can’t see into the cupboards or the fridge or freezer because they’re too high or too low or I’m too reclined. The room isn’t really designed for a wheelchair user, and so I have to rely on Johan to tell me what we’ve got in to decide what to eat.

I want to be able to sit upright without fainting. That would mean so much to me. It would mean I could use a normal wheelchair, instead of needing a tilt in space one. Getting into the kitchen and looking for food would be at least partially doable. I’d probably be able to manage using the normal toilet. I might even be able to wash somewhere that isn’t my bed, like the bathroom. I could manage with a normal shower seat. I could probably even get dressed without lying down, which would make it a lot easier.

I want to have a day without any nausea. Asking for a day without pain is far too much, but having an entire day without nausea would mean I’d be able to eat better, and would be able to cope with everything more. I do have anti nausea tablets that work, but they also put me to sleep so I’m reluctant to take them when I can just about manage without.

I want to be able to have cereal with milk and eat it by myself. That would mean sitting up to eat it (I mostly eat in bed, propped up a little bit, because if I sit up even in my tilted and reclined wheelchair and try and chew at the same time it’s too much), being able to hold and use a spoon, and not spilling it everywhere. Though I can sometimes manage using a lightweight plastic spoon or fork for a few mouthfuls, my hand then starts spasming so I need Johan to help me finish. With cereal there’s so much to go wrong that I just eat it dry with my fingers, but it would be nice to manage it properly some time.

I want to be able to take my medication by myself. At the moment Johan has to sort out and give me my medication. Due to the severity of my cognitive issues, it’s dangerous for me to manage it myself as I’d forget if I’ve taken it and might take too much (and since most of the time I have no idea what time it is even putting it in a box wouldn’t help). I struggle to hold the tablets or capsules and can only sometimes manage putting them in my mouth if Johan’s passed them to me. Other times he has to put them in my mouth for me because my hands are being too stupid or my vision is too blurred and I can’t figure out where my mouth is. Then I need help with the cup as it’s heavy. As for the liquid medication, there’s no way I’d be able to manage measuring and pouring it out safely.

I want a hot drink. A cup of tea or a hot chocolate would be lovely. Hot drinks are dangerous though- there’s a high risk of scalds. I do have a thermos I could try drinking from, but then the other problem is that Johan doesn’t feel able to make a hot chocolate or a cup of tea, so it just doesn’t happen. If I could get out then I’d be able to have one at a café or somewhere (like the one in the library).

As Johan pointed out when I told him what I was blogging about, most of these are big things to me as I can’t do them. To those without severe illness or disability though, these are quite small things. There are other things I could have added, like moving independently around the flat, and getting dressed by myself, but this list will do.

Some of these I may be able to do in the future. I’m hoping the OT will provide me with a suitable shower seat so that having a shower will be doable. I’m having an assessment for a power chair, and depending on how it works I might be able to go into the kitchen and even choose food. If my hands improve further then maybe I’ll get that bowl of cereal. I’m very grateful for all I am able to do- get out of bed occasionally, go on my computer, speak or type, get dressed some days, use my tablet to go on Twitter and communicate with the world. But sometimes it’s hard not to want to be able to do more.

Danni

Today

Autism, Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

(All times are approximate.)

9.30am- Woke up to the most horrendous metal on metal clanging noise. Body screaming at me, feeling extremely nauseous and deathly ill. Not the nicest way to wake up. Johan comes in, gives me painkillers and anti nausea tablet and heats up penguins for me. I put ear defenders and sunglasses on, Johan puts curtain up over blind to block out more light.

10.00am- Morning carer arrives. Feel far too ill to have any personal care done, there are no dishes and there’s no way I could cope with the washing machine. Carer tells me to feel better and signs the book and leaves. Not long after, drilling accompanies the metal clanging noises.

10.30am- Anti nausea tablet kicks in so I stop feeling like I’m going to throw up. Go on tablet with sunglasses on to distract myself from the noise and how ill I’m feeling. Go on twitter for a bit. Noise continues.

11.50am- The sedative effect of the anti nausea tablet kicks in. Swap sunglasses for eye mask, and fall asleep. Still drilling, banging and metal clanging noise.

Some time later- Wake up to pain from ear defenders (I sleep on my side and they’re not the most comfortable things to wear, though using my neck cushion around them helps). Notice noise has stopped so take them off. Fall asleep again.

At some point during this time Johan goes to Newcastle, buys Munchkin and some dice, and comes back again. I don’t notice as I’m asleep.

6pm- Wake up. Feel drugged up but not as ill. Johan comes into bedroom and is very excited about dice and Munchkin. Tells me he wants to play it with me some time. I agree. I go on tablet and go on Twitter again, with normal glasses as not as light sensitive any more. Johan gives me painkillers and heats up penguins for me.

7.00pm- Feel a bit peckish, so get some crackers from my snack drawer and Johan brings me some cheese. They are nommy.

7.30pm- Still feeling really drugged up and drowsy but pain is bearable. Decide to go into living room as don’t know if the morning will cause me to relapse and want to get stuff done. Johan helps me into my wheelchair, tilts it back,  sorts out my pillows, and pushes me into the living room. Go on computer and play games.

8.30pm- Evening carer arrives. Language processing is all used up from chatting to Johan earlier, but know that body is too delicate to manage any personal care. Johan takes book out for evening carer to sign. I’m in World of Warcraft and wanting to get my dailies done as I can do them almost on autopilot now.

11.10pm (now)- Still on computer, writing this blog post. I feel okayish so long as I don’t move. Ability to chat is broken, but can type randomly okay. Will be going back to bed at some point. Still feel very drugged up but could be worse. I’m hoping that we did enough this morning that I don’t relapse, as too much noise is my main relapse trigger. Won’t find out for a day or two, so am doing preparation work in case I do relapse.

And that is why I’ve not written a proper blog post today.

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.)