Mar 042014
 
Penguin and Penelope. Penny's wing is bandaged.

Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave πŸ™ I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed πŸ˜› Time to sleep now, and that’s good too.

 Posted by at 4:32 am
Feb 122014
 

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy πŸ™‚

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting πŸ™‚ For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird πŸ˜› I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can πŸ˜€

 Posted by at 8:53 pm
Jul 102013
 

So, for the past few months I’ve spent nearly every moment in bed. It doesn’t look like I’ll be leaving it any time soon so I’ve been working on ways to make it work better for me. These are what work for me- others may find it helps, or not.

  • Comfort is the top priority. Most clothes are not comfortable for lying in so don’t get worn. Some clothes are good though- t-shirts and leggings, shorts and skirts tend to work well for me. Pyjamas and night clothes are also good, and some of them can even pass as daywear (I have an awesome set of pyjamas that look like a long top and leggings but are amazingly comfortable). I find having a cardigan or zip up hoodie is good as it’s easier to put on or take off when cold than a jumper.
  • When I’m too ill for a proper bed bath, bath in bed wipes are often a pretty good substitute. These wipes are especially designed to be used for washing in bed. They’re bigger than baby wipes and can be microwaved to warm them up. As they don’t require extra water or drying afterwards, it takes a lot less spoons to be washed with them. I still like a proper bed bath when I feel up to it though.
  • There are various ways of dealing with hair. Dry shampoo works for a few days, but I find it doesn’t do a great job when it’s gotten really greasy. There is no rinse shampoo you can get (works best if you can sit upright for a couple of minutes) or even better, a shampoo cap that has the no rinse shampoo in it. The shampoo cap can be microwaved to warm it up (it makes it a lot nicer) and we’ve successfully used it with me lying down, kinda on my front and side.
  • For proper hair washing, an inflatable basin makes it a lot easier. If you struggle at all to hold your head up get one with an inbuilt cushion- in fact, do so anyway if you can as the extra cost is minimal and it makes it much easier and more comfortable. I find that kid’s 2 in 1 shampoo works for me, as the scent doesn’t bother me and it means I don’t need separate conditioner (so less spoons are needed) but use whatever shampoo works for you. I find that having a towel around my shoulders works to catch drips and makes it easy to be brought over my head to dry my hair afterwards. Also remember to put towels (or even a bin bag) under the basin so if it spills it doesn’t soak the bed. Also, make sure your carer doesn’t remove the bucket the basin drains into before it’s finished draining- we got a clean floor out of it but if you’ve got carpet it’ll be a bit soaked!
  • I ended up getting all my hair cut off after a really bad relapse as it was just too knotted to deal with and I wasn’t well enough to have it detangled, even by someone else. If you can have it brushed every few days, then having long hair in a plait or two in between is a good way to stop it knotting too badly. Scarves are really good for both tangle prevention for long hair and hiding greasiness for any length hair. I also have a turban that I can just pull on when I’m not feeling well but my hair feels wrong- eBay is a good place to get that sort of thing.
  • Cushions and pillows are essential for comfort. The best I’ve found for me is a U shaped body cushion. It’s absolutely huge, 12 feet long but it supports me on both sides and also makes it easier for Johan to position me. Before that I used lots of pillows and that worked a bit but tended to move. Some people like squishy cushions but most of them are too small to work for me most of the time. They’re great for holding something in place though.
  • An overbed table makes life much easier. I use mine for my computer monitor now but in the past it was used for my laptop, meals (when I could sit up) and other stuff. I now use my Trabasack for meals and things as I only have one overbed table but I’m considering getting a second one at some point for other stuff. Β They’re not that expensive for the basic ones, though if you’re weak you may need help with adjusting them. Those that are easier to adjust tend to be a lot more expensive, but may be worth it if you have the spare money and would be able to work them (I can’t).
  • If you’re living life completely in bed, then toileting will be done either by bedpan or incontinence pads. Sucks but unfortunately it’s something that just needs to be dealt with. If you’re well enough then having a commode next to the bed is a lot easier (as it’s more like using a toilet) but those who can’t sit up at all without fainting or falling off (like me) don’t have that option. There are different styles of bedpan so don’t be afraid to try different ones to find one that suits you. There are also urinals for both men and women that might work, though as I tend to poo without warning that wouldn’t have worked for me. When my incontinence got bad pads became easier, and can be changed pretty quickly once you and your carer know what they’re doing. Still hurts but I find them more comfortable than using the bedpan was. There are bed changing pads that will help in case of accidents or spills. Some can even be tucked in to stop them moving too much.
  • A sheepskin is wonderful for helping make a bed more comfortable and helping to prevent bedsores. In most places they’re rather expensive but Ikea does a decent one for Β£30. They’re pretty hard wearing but can’t really be cleaned that easily so bear that in mind. That said, mine has managed with just patch cleaning for several months now and though it’s looking raggedy it still helps.
  • If you’re well enough, a laptop, tablet or internet connected phone makes a massive difference. I find a 10 inch tablet and my gaming computer set up next to my bed (with the monitor on the overbed table) works best for me, but that may not be the case for others. I don’t have the fine motor control now to manage a phone and struggle with a smaller tablet but I know for others they’re often easier. A laptop is easier than a desktop computer and you can get special stands to put them in the best position for using lying down, but they’re not as powerful as a desktop computer for heavy gaming. I do know I’m lucky to be well enough to do gaming though πŸ™‚ I use my tablet mostly for Twitter, reading blogs and ebooks and browsing websites. I also use it as a communication device when I’m nonverbal.
  • A Hydrant is great for drinks in bed without having to worry too much about spilling and you can go for a bit longer between refills as they go up to 1 litre in size. The ends need changing every couple of months (of constant use) or they do start leaking, but they’re pretty cheap (buy in bulk to save on postage) and easy to fit when they need replacing. For hot drinks, I find a travel mug works best for me, with straws in the little hole for drinking. I also have an extra handle for when I’m strong enough to lift a cup to help keep it steady.
  • The best headphones I’ve found so far are the Sleepphones. They’re headphones designed to be worn in bed and I find they’re much more comfortable than standard ones, especially when I’m lying on my side. They are flat headphones in a fleece headband (looks a bit like a sweatband). It comes in different colours and sizes, including purple πŸ™‚ The extra small fits me but I do have an unusually small head. They’re not the cheapest in the world but I think they’re worth the Β£31 I paid for them. There are other similar ones but I’ve not tested them as these ones work for me.
  • If possible, have as much stuff in reach as you can. The less you need to call for someone to get stuff, the better. When I was in a single bed I had a small bookcase next to my bed that held quite a lot. Now I’m in a double bed and unless I’m having a very good day, I can only reach the stuff on the bed. I can have quite a lot on here though- my penguins, my tablet, snacks, maybe a magazine, my cushions and pillows, computer mouse (on a large book for a flat surface), my scarves and often random other stuff. If you can reach a bedside table, have what you need most frequently (or urgently) closest to you. I have a drawer in mine for storing snacks and another for medications, so when I’m well enough I can grab my own snacks (great at 4am when I don’t want to wake Johan if I can help it) and means my medication isn’t always on show (though Johan often forgets to put stuff back.
  • Bed socks are amazing. I find my feet get cold even while the rest of me is sweating and overheating, and proper bed socks are warm, comfortable and unlike normal socks, don’t dig in. When they’re not enough, I have slippers that have microwaveable inserts that warm my feet up even when they’re most icy. I also have a wheat bag I use near my feet when I’m not up to slippers and for when I go to sleep (I find my slippers feel wrong when I’m trying to sleep). I get mine from eBay.
  • My microwaveable penguins are awesome. Not only do they keep me company at all times, the heat also helps warm me up when my body temperature is all wonky and helps with pain. There have been many times when those penguins have kept me out of hospital. You don’t necessarily need penguins, but some form of wheat bag is a great help (I find the animals keep the heat longer- maybe it’s the fleece?).
  • Try and have the bedroom as pleasant as you can. I know some people need it as non stimulating as possible, but if you can have nice pictures and things you like where you can see them. I have my bed placed so when I’m well enough I can look out the window and watch the birds. At my old flat I used to watch the sunset (here there are buildings in the way that mean I can’t see them, but that is a benefit as my light sensitivity is worse and means it’s darker in here).
  • You can get remote controlled lights and electric switches. They mean a lot to me, as any control over my environment helps. My main light bulb is remote controlled (LED and colour changing, which I like a lot) and I have a different remote control for the sockets that my lamp and fairy lights are plugged into. That means I’m able to control my own light levels.
  • A fan helps a lot when it’s warm in summer. If it’s placed where you can’t quite reach it, you can have it plugged into one of the remote control sockets to be able to control it that way (though you won’t be able to change the speed, you could turn it on and off which is the important bit).
  • I have an eye mask that I don’t sleep without now. There are many different ones so hopefully there will be one that works for you. It lives on my bed so I’ve always got it to hand. I also have ear plugs and ear defenders. My ear defenders aren’t comfortable when I’m on my side but work well against machine noises (lawnmowers, vacuum cleaners, washing machines) and are easy to put on. Ear plugs are harder to put in but block more noise and are more comfortable when lying on my side. Combining the two means when I’m really noise sensitive I can get some peace.
  • Don’t forget to move while you’re in bed! The biggest risk is bed sores, and you really don’t want them. If you’re able to move yourself, do so as often as you can- I tend to wriggle around quite a lot while I’m awake. When I’m asleep, the pain from being in one position wakes me up every 60-90 minutes so unless I’m paralysed I roll over then. If you can’t roll over yourself, make sure someone changes your position every couple of hours. I’m hoping for a better bed and mattress so I get less pain soon, but in the meantime the waking up and wriggling works. I’ve only had (grade 1) bed sores when I’ve been paralysed and so unable to roll over or to let Johan know I can’t.
  • There are hobbies you can take part in while you’re in bed. My personal ones are currently reading, watching television shows on my computer and playing computer games (I’ve been doing pretty well recently with noise and light- it’s mostly movement and being upright that’s keeping me in bed, and a lack of hoist). When I’m less well looking at pictures (on my tablet or in magazines) has been good. Communicating with people via twitter on my tablet also helped keep me sane while I’ve been too ill for many visitors. For those who have hands that work, there are loads of crafts- knitting seems strangely popular, and many different types of art can be done with an overbed table or a tray.
  • A waterproof mattress protector is essential. You will spill something at some point and the last thing you want to do is soak the mattress. If you can cope with the noise, a duvet protector and pillow protectors can also help. I have spare pillows and duvets for when mine are wet as the crinkly noise is too much (I’ve just ordered a spare U shaped pillow as it’s now so essential to me) and while you can change bedding while you’re still in bed, changing or turning the mattress is pretty much impossible. My mattress protectors don’t make a sound and have a terry towelling top.
  • Have a way to contact whoever helps you. For me, I can use my tablet to message Johan, or if necessary send him a text message or call his phone (it’s connected to my phone via Bluetooth). When I’m on my computer we go on Google Hangout using webcams so we can see each other even if we can’t be in the same room. For absolute emergencies I have a care call system where I have a button to press that will go through to a call centre who can get the police or an ambulance if I’ve fallen or I need help. I don’t have the strength a lot of the time to press the button which is a problem, but the idea is sound (we pay for it along with our rent I think). Some people find that wireless doorbells work when their carer is in another room.
  • Try to remain positive. Living in bed is not the end of the world. It may not be what you choose but it doesn’t have to be completely negative. I find joy in many things while being in bed, and though I do want to get out and back into my wheelchair, it hasn’t been all bad. Bringing my computer in here so I could use it in bed was one of the best decisions we made.

That’s some of the stuff I use to help with living life in bed. Below are links to some of the items I mentioned- some I won’t link as I either can’t remember where I got them or they are widely available and/or there are different types. Feel free to ask if I’ve missed one you want to know about.

http://www.completecareshop.co.uk/Β – Bed in bath wipes, shampoo caps, no rinse shampoo, hair washing basins, overbed tables, and other stuff. Tends to be well priced.

http://www.amazon.co.uk/gp/product/B00B02Z6EC/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1Β – U shaped cushion. Amazon also sell many other things I mentioned here- Sleepphones, radio controlled plug sockets and light bulbs, duo cup holder (extra handle for cups), eye masks, penguins, and other things.

http://www.hydrateforhealth.co.uk/the-hydrant.htmlΒ – The Hydrant (drinking bottle with tube).

 Posted by at 6:39 pm
Mar 202013
 

Last year we moved from a large private 2 bedroom maisonette to a smaller council 2 bedroom flat as an upstairs maisonette isn’t practical when you can’t walk. Our medical priority for a council place only applied to two bedroom flats or bungalows, as the council said we needed two bedrooms for medical reasons. One of those bedrooms has now been classed as spare, despite the same medical reasons applying. We would not have received medical priority (so wouldn’t have moved as quickly as we did) had we bid on any one bedroom place.

This is a quick comparison on how much the council and we would pay had we stayed in our maisonette (we had an epic landlord who didn’t raise the rent above the rate of local housing allowance we’d get) and what we’ll be paying in our current flat. Not included: value of free pizza received from old epic landlord.

Private Maisonette Council Flat
Rent per week Β£90 Β£72.87
One bedroom local housing allowance rate Β£91.15 N/A
Housing Benefit paid Β£90 Β£62.67
Total shortfall to make up Β£0 Β£10.20
Cost to council over 1 year Β£4680 Β£3258.84
Cost to us over 1 year Β£0 Β£530.40

I know we were very lucky to get a large 2 bedroom maisonette for the one bedroom local housing allowance rate, but we wouldn’t have been penalised for it. It costs the council more to pay the one bedroom rate for a private let than it does to pay the full rent for our two bedroom flat, yet the way the bedroom tax works it’s going to push some people into private housing (as there simply aren’t enough smaller council properties available). Ultimately, it’s not going to save anyone any money, it’ll just make the poor poorer.

We also need to pay Β£90 a year council tax when previously we’d had the full amount paid as we were considered to be on a low income. That means we’ve got to find an extra Β£620.40 this year- I can promise you our benefits haven’t increased by anywhere near that amount!

 Posted by at 8:33 pm
Jan 232013
 

I’m still stuck in bed. Sitting up isn’t working, moving is difficult and most of my symptoms (apart from light sensitivity) are still really bad. Because of this, we moved my desktop computer (called Matilda) into my bedroom temporarily so that I have a decent machine to use.

I had been trying to use my laptop (Annika) but as she’s over 5 1/2 years old and a bit broken, it was rather frustrating and meant I couldn’t do as much as I wanted to. Playing games wasn’t working as the lag was making my motion sickness really bad. Reading stuff was easier on my tablet, and typing was an issue as the wireless keyboard I used with it was too lightweight so kept moving when on me and I couldn’t be propped up enough to use the laptop keyboard comfortably.

I know the most likely reason I’m not improving like I’d normally do. Our upstairs neighbours are still causing a lot of noise every other night which makes me more ill. I have managed to send an email to the housing officer but have yet to have a response. Writing that email made me feel terrible though, and it’s not the only communication thing I have to do (I can write blog posts as they’re just a brain dump- emails need to be properly written and that requires more brain power than I really have).

I have not seen my GP yet. Johan tried to phone her before Christmas but we never got a call back, and he’s been too anxious to try again. I really need to speak to her as the dietician prescribed supplements and I need stronger painkillers (we’ve had to resort to doubling my tramadol when it’s unbearable, as it’s less risky than going to hospital for morphine). I also really need to get my bladder issues sorted, as while I don’t mind wearing incontinence pads for now, I don’t want to need them for too long if I don’t need to. They have made a massive difference though, and I’m less sore than I was using the bedpan.

The care agency is still messing us around. I need to complain but I haven’t got the energy. What we need is support with communication and appointments- someone to help us with sorting paperwork (now I’m no longer well enough to do it), telephoning people, helping us write emails, making appointments, informing people of our needs (I have an ultrasound next month and they say to phone them if you might need help getting on the bed- we need to let them know that and that I’ve got a big wheelchair as the waiting room is really small). I asked and asked for help finding someone but we got nowhere, and now I’m too ill to do it. I knew this situation would occur but that doesn’t matter to anyone like social services.

We’ve had some good news. Scottish Power asked for our meter readings, and though it took Johan a while to actually get them (anxiety and forgetting) once we gave them they have reduced our direct debit as we’re well in credit and it was set too high. It was already quite a bit lower than at our old place so this flat must be better insulated and stuff. That’s an extra Β£25 a month which will come in handy. We’re also getting two cold weather payments as it’s been so cold (and I’ve had to ask Johan to turn the heating up as my nose was getting cold- indoors in bed). I’ve decided to use them for bedding as I’ve seen some awesome rainbow ones online that are the type I’ve been looking for for years, and since I spend so much time in bed it will help.

Having Matilda in here is helping me so much. We have my big monitor on my overbed table, my mouse on a pillow and book on the bed and my keyboard propped up on me with penguin pillow. I need to work out the best way to have the keyboard as my tummy gets a bit sore with it poking me in my tummy, but it’s loads better than the laptop. I managed to play a bit of World of Warcraft and SimCity Social earlier, which was made possible by it not being as jerky. It also means I can get on Facebook properly again, and I’ve loads of things to respond to from the last couple of months that I’ll try and get through in the next week or so. I’m hoping to start building up my ability to watch videos and things- probably start with short YouTube videos then go from there. I’m going to have to be careful not to overdo it, but it’s massively improved my mood.

I think the hypersomnia may be calming down a bit. My sleeping pattern is completely off again because of it (hence me writing this at twenty to six in the morning) but I’m trying not to worry too much about that. It will fix itself at some point. Right now I’m just sleeping when I need to sleep, and being awake when I can. I’m still not eating enough, but managed a couple of meals of actual food (rather than just yoghurt and milkshake) and though it’s exhausting and I can’t do it everyday yet I’m hoping to build that back up too. It’s frustrating as if we didn’t have the neighbours causing so much noise I’d probably be doing better like I was the last few times I relapsed. At least I’m not right at the bottom.

We’ve had snow. Lots of it. Johan went out a couple of times but I think he doesn’t want to go too far while it’s bad. I’ve been impressed by the Sainsbury’s delivery guy for not being that late despite getting stuck somewhere else (we got a phone call telling us he’d be late, something we were expecting anyway). I’ve seen photos and when it was snowing heavily one evening Johan pulled the blind up so I could watch it properly. That was awesome, as it was lit up by the street lamps so not too bright but it was beautiful falling.

Johan is not doing great, though it could be worse. His anxiety is really bad (which is why he can’t contact the GP or anyone else) and his brain has been mean to him at times. I wish it was as easy to fix as my bad night was- we fixed mine by giving me a double dose of tramadol as it was all pain related. He’s had a few projects though which I think have helped a bit. He’s built a media centre server out of spare parts we had laying around (he bought a new case and CPU cooler from the local computer shop but that was it). He managed to get his broken monitor working again. Since he brought my computer in here and I can only have one monitor for now, he’s borrowing my desk and my other monitor and now has a four monitor setup, and I think he’s plugged into the telly as well. Things like that seem to help, even if only for the short term.

Johan is going to London to see John and Hank Green (vlogbrothers) very soon. He’s planning on going to Leeds afterwards to see his parents as he’s not seen them for far too long. Vicky is coming to stay with me while he’s gone, which is good as she’s had some experience in personal care (including bathing me when I was severely depressed) and is not someone who makes me worse. My main issue is going to be remembering not to talk to her too much as it’s tiring and accidentally spending all night chatting has happened before.

Overall I’m not as bad as I could be, thanks to ear plugs, ear defenders, and Johan. I’m frustrated that any attempt to increase my pillows fails so getting out of bed isn’t going to happen for a bit (which means the ultrasound that’s meant to happen next month is probably going to be interesting, though I’m determined to make it if I can as I need my biliary system checking). If I’m careful I can play some games, read some blogs and children’s books, and sometimes eat solid food that needs chewing. I still can’t listen to music with lyrics or anything too complicated but I’m hoping that’ll improve soon. I have loads of TV programmes to catch up with when I’m able to watch them πŸ™‚

My penguins keep me going. Johan plays with them for me when I’m not doing great and it helps a lot. Penelope is definitely the head of the family. Penguin still loves flying and trying to get his own way (and often failing). Poseidon wants to learn about everything, and has started using Twitter. Purple Penguin is just happy about everything, and often goes exploring (usually under the bed). Po and Purple Penguin went out with Johan and got to experience snow. Po decided it was too cold (he is a baby emperor penguin and they normally stay on daddy’s feet at his age, though as it’s warm in my flat he can explore more) and Purple Penguin thought it was brilliant. I am glad they went out in it even if I couldn’t.

 Posted by at 6:24 am
Jan 142013
 

Thanks to my ME and the brain fog and cognitive issues that come with it, I have a few issues with language that I never used to have. I forget words, muddle them up, say the wrong thing. I get a dyslexia like problem where words get jumbled up on the page and so I misread them, so my understanding of them isn’t great. It happens both with written and verbal communication, reading and writing, speaking and listening. Sometimes this is funny, sometimes it’s embarrassing, most of the time it’s frustrating.

Autism also brings its own language stuff to the table. I still take things literally when initially hearing them, though I can now “translate” most common figurative phrases into their actual meaning. I struggle to adapt what people have said to make it fit my personal situation (that caused more of a problem at college than it does now). Sarcasm is often a struggle- I sometimes understand it, and can even use it, but other times I take what is said seriously. As is often the case with autism, my ability to process language is variable day to day (or hour to hour). ME just makes things all the harder.

I love language. I like to play with it, changing words into forms that sound nice and feel nice to say, repeating words I like over and over (bananas!). Johan and I can judge each other’s moods based on how we’re using language. When I was younger I was called a walking dictionary due to my like of using new words I’d discovered that most people didn’t seem to understand and knowing the meanings of loads of unusual words, but now I stick with a vocabulary that is mostly understood by those who I want to communicate with.

How language is used interests me. As my main source of information at the moment is Twitter, I see most things in bite sized chunks (very good for a foggy brain). Some of what I see I agree with, some of it I don’t. I wanted to write a bit about it now. (I’m sorry if this isn’t very clear or coherent, I’m still waiting for a good day to happen and wanted to write it now.)

The main use of language is communication. For me, the meaning and intent of the communication is the most important thing, as although language can be beautiful in itself, it’s the communication that makes itself useful. I mostly don’t worry about the actual words used so long as the meaning gets across. There are exceptions to this. I don’t like the use of language that is used offensively to imply a group of people are inferior to others in some way (racists insults, the r-word, things like that). I do like people to determine their own language to describe themselves, even claiming back words that were previously used offensively (crip and mentalist are two that are used quite a bit by those I follow on Twitter). What I dislike most though is the use of language to exclude people.

There are a few areas where language is being discussed in the communities I’m part of. In the autism community, there’s the removal of the diagnosis of Asperger’s Syndrome from the DSM 5. I consider all those diagnosed with Asperger’s to be autistic (as it’s classified as an autism spectrum condition, and where the line is drawn between Asperger’s and autism seems to depend more on who diagnoses you than your actual pattern of skills and difficulties). There are some who disagree with this. I don’t like the term Aspie for myself, but don’t get upset when others use it. My personal preference is to be described as autistic- I believe that fits me best, as a distinction made based on my language abilities as a toddler doesn’t exactly have much bearing on my abilities as an adult. I get slightly irritated when someone describes me as having Asperger’s Syndrome (as that’s not how I describe myself) and quite a bit more irritated when someone describes Johan as having Asperger’s (as that’s not even his diagnosis) but I’m mostly irritated at those who think that having Asperger’s is better than having autism (or better than being neurotypical, or neurodivergent in other ways), as I believe that’s wrong (everyone is equal to me).

In the ME community, it’s the name itself that’s the main issue. There isn’t a universally agreed name for the illness, which sucks. My diagnosis was originally given as myalgic encephalomyelitis, but has also been described as chronic fatigue syndrome. In quite a lot of places the two terms are put together. Some doctors use myalgic encephalopathy. It has loads of other names too. Some people dislike it being called ME as it’s not obviously accurate. Quite a lot of people dislike the term chronic fatigue syndrome because it trivialises a serious debilitating illness and makes it sound not that bad. My view is I prefer ME as it is taken more seriously by doctors and is closer to describing the condition, but I really don’t have the energy to get into massive arguments about the name as I’m too busy trying to live with and try and get better from it. I meet pretty much every set of criteria for ME or CFS I’ve seen, and I know some of the issue is that some people are diagnosed with CFS who don’t have the same illness as those with ME (some of whom may have other, possibly more treatable conditions) and that’s been used to promote treatments that are harmful.

Although the name is important (as it does affect attitudes), some people seem to believe it’s the most important issue, and if you don’t agree with them you’re not good enough. I’ve seen comments along the lines of all those diagnosed with CFS aren’t as ill as those with ME (which one you get diagnosed with is more to do with who does the diagnosing) and that if you combine the two (as I do sometimes to be inclusive to those with either diagnosis) it’s the worst thing ever. It’s draining. I’m far more interested in effective treatments and a cure, as having a name that everyone agrees with, though good, wouldn’t do much to take away the pain, weakness, muscle spasms, jerkiness and other horrible symptoms I have. Using the name to exclude people from the community and possible sources of support is really sucky.

In the general disability community, there are other language discussions that come up. A big one is about person first language. That’s where you consciously say a person with <autism/deafness/etc.> rather than an <autistic/deaf/etc.> person. The claim is that it puts the person before the disability. I’ve mostly heard this from non-disabled people, but I’m sure there are disabled people (or people with disabilities) who believe this. For me, I believe this is very individual. I consider being autistic (and being disabled) part of my identity. I’ve always been autistic, and as it is a difference in my neurology it affects how I perceive the world. For this reason I normally call myself autistic, the same way I’d say I’m tall. I’m not strict with it though, and will sometimes say I have autism if it fits better with what I’m saying (just like I can say I’m blue-eyed or I have blue eyes, and both are accurate). I’ve been yelled at (by someone without a disability) for calling myself autistic before, and feel that was very much wrong as it’s my identity and they were trying to force their beliefs on me in an area which directly affects me.

I feel different regarding the ME. As it’s an illness that causes disability, rather than just a disability like autism is, I don’t see it as part of my identity. So I pretty much always say I have ME. Others will probably disagree and may see their illness as part of their identity, and that is their right and I will respect that, and will try to remember what language they prefer (and hopefully they’ll take my disability into account and be forgiving if I mess up sometimes). I know people who feel strongly both ways on person first language and other issues, but so long as everyone is respectful and agrees that what is right for an individual is determined by that individual, then all is good.

The biggest reason for wanting to write this blog post (though I’d been wanting to talk about all the above for a while) is because of some recent conversations I’ve been seeing on Twitter. Most of these are in more general equality communities (feminists and such) rather than specifically disability related, but disability politics and language is obviously involved in it. It’s regarding using language as a tool to exclude people from a community, and ultimately from equality.

The first way I’ve seen it happen is by using language that is offensive towards a group of people, while claiming to be for equality for all. I’m not going to go into any specific examples but feminists who use language that insults transpeople is an example. Now I believe that intention is a big part of communication, and this may occur accidentally. If it was unintentional, I believe the best thing to do (when it’s pointed out to you) is apologise, and try not to repeat the same mistake. Those you insulted may be angry, but I believe most people have good intentions and if you can do your best to learn from it, then it should calm down. Of course, this may also be done intentionally, because unfortunately some people don’t believe everyone is equal and some people believe that if you’re attacked the best thing to do is to attack others, in which case you’ll have a very angry group of people and hopefully the law can step in if it goes too far. I also believe you should challenge the opinion, not the person. Responding to hate with hate just makes more hate.

Now I’ll admit here that I don’t fully understand the concept of privilege as used by those in the feminist/equality community. I know that as a white, literate, disabled female in the UK I have privilege due to my skin colour, literacy, and living in a “developed” country with a welfare system, but men and those without disabilities have privilege above me cos I’m a disabled woman. I’m guessing it’s more complicated than that but I’ve yet to find an easy to understand explanation (I especially don’t understand how my privilege works regarding my sexuality, as I’m bisexual but most people assume I’m heterosexual).

That brings me on to the second way I’ve seen language used to exclude people. I’ve seen some people in the feminist/equality community use lots of jargon and terminology, and if you don’t understand it then you aren’t a proper feminist and you can’t be a good ally or whatever. That attitude excludes a lot of people. For me, it scares me from even getting involved in any conversations as I’m so terrified I might make a mistake and someone will get angry at me (and I’m not the only one who feels that way). It excludes those who for whatever reason don’t have the level of education needed to understand those terms. It excludes those with learning disabilities. There will be others as well. This is especially upsetting for me when it happens regarding disability issues as so many in the community have difficulty in using standard language to communicate to begin with. The insistence that everyone uses the same jargon (with the assumption that everyone has the ability to understand and use it) is very scary for someone with mild language and cognitive difficulties and anxiety. There are also those who play the “I have it worse than you” card, often without knowing the full situation of the other party, and believe they can never understand if they’ve not experienced the exact same difficulties. I believe that everyone is equal and want to help make the world safe and happy for everyone, no matter what differences or similarities they have, but I’m scared to do much as I’m afraid of being attacked by those who say they have the same aims as me.

I wish I knew a solution to this. There are things that could improve matters. Making information about feminism and other equality subjects more accessible for those with learning disabilities by using plain language and easy to read formats would help a little bit. Understanding and tolerance go a long way. Learning the best way to deal with bullies, fun suckers and trolls (who exist in every community, unfortunately) would help for some situations but I’m guessing that often depends on the situation.

On a personal level, I’m just going to do my best to treat everyone like a human being who deserves equality. I’ll make mistakes, but I hope to learn from them. Some of those lessons may be embarrassing and/or painful, but I hope in the long run they’ll make me a better person. No matter what, I have as much right to be here as any other person on this planet.

 

 Posted by at 12:13 am
Dec 042012
 

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.

 

 Posted by at 4:03 am
Dec 042012
 

So I failed NaBloPoMo. Since it was due to a relapse, I’m a bit sad but not massively upset. I would have liked to have completed it but never mind. What I am going to do is try and get back into blogging regularly again, as I enjoy it and apparently people like reading what I have to say πŸ™‚

Blogging is an interesting thing for me. It’s the only form of writing that I like doing. When I’m able to talk about the stuff in my head, the words just come tumbling out of my head through my fingers and appear on the screen in a way that normally makes sense. Once I get started, it’s hard for me to stop until I’m finished, which is why so many of my blog posts end up so long. I’m not very good at writing essays or fiction, but blog posts I really enjoy.

I’m doing a little bit better than I was. I’m able to chew and roll over independently again, though I have to be careful how much I do it as yesterday I overdid it. I’m still lying in the dark in the quiet, and need sunglasses on to manage my tablet, but it could be worse. The pain is still really bad and I probably could use some morphine but since even having the kitchen light on with my door open sets my body into spasm going into hospital is probably not the best idea.

I’m in full sleep reversal, which is annoying. As I’m very jerky right now trying to sleep is hard, as my arms and legs keep moving without my permission. In the mornings I normally zonk from exhaustion an hour or two before the carer arrives, which is annoying as I want to have a wash and things. The good news is my favourite carer (also known as awesome morning carer, though she occasionally does evenings) is back after being gone for an operation and then her body deciding to be mean to her while her immune system was compromised. She is doing better now though which is the good thing.

Favourite carer is the only one I currently trust to wash me when I’m this ill. She requires a lot less instructing than the others, and she’s been working with me for a while so knows me very well. I think it helps that she has a disabled brother who has some care needs not too dissimilar from mine so she knows what to do already. I’m a bit different from the normal frail old people the agency normally helps so most of the other carers don’t know what to do with me. One of the other carers was told not to turn the electric toothbrush on at the beginning of the relapse, but did it anyway causing me a lot of pain that was unnecessary. I know those sort of mistakes are a lot less likely with favourite carer. Now I just need to be awake when she arrives so I can have my wash :-p

Favourite carer also brought me some penguin gloves her daughter picked up from Primark for me (I’ve given the money back) πŸ˜€ They are fingerless with the mitten pull over thing, which are awesome and exactly what I wanted. They even have purple stripes on them. They go very well with my penguin hat so I’m going to have a virtual trip in the snow when I’m next awake during the day. It has been snowing here but I’ve only seen it on a photo Johan showed me.

The title of this blog post is referring to one of my more annoying ME symptoms- tachycardia. I’ve noticed that since getting more ill in general, my heart does more of what I call funky dances, which is my way of describing it not acting normally. The most usual is the tachycardia, but I also get missed beats, extra beats, irregular heartbeat, a really slow heart beat. I don’t think any of these except the tachycardia have shown up when I’ve been tested, but apart from the really fast heart beat they tend to only last between a few seconds and a few minutes, and not occur that frequently. Still, they’re all annoying, and I’m pretty sure a resting heartbeat (by that I mean lying in bed not doing anything but breathing, as anything else is exertion to me) of over 120 beats per minute isn’t entirely normal. It goes up a lot when I do anything. Maybe that’s partly why I have a complete intolerance to being upright?

There’s been some news about autism recently. There was a conference thingie in the US Congress or something (my memory is really bad at the moment, sorry) and from what I can gather from Twitter and blog posts most of it was going on about how autism was a massive burden and things like that, and only two people (who were autistic) said anything differently. I’ve made it quite clear that I don’t want a cure for autism, and I can’t see how one can occur without completely changing the person due to the way it influences every part of the autistic’s life, but what I do want and support is education and support so that every autistic person can live as best a life they can. I know that the autism specific education I got at Interface was invaluable to me, and although I’ll never manage life completely independently it did help me see that I can achieve if I have the right support.

The other big news is that the DSM 5 has been approved and that Asperger’s Syndrome is being removed and everyone is being put under Autism Spectrum Disorder. I don’t actually mind the removal of Asperger’s Syndrome- whether you got diagnosed with that or autism mostly depended on who was doing the diagnosis, and the only major difference between the two was the lack of language delay, which becomes a bit irrelevant in later life. I do know the only reason I got the Asperger’s diagnosis was because I spoke on time. My main worry is that people who need a diagnosis for support may no longer get one as they might not meet the new criteria completely despite having problems requiring help, but that’s to be seen.

I’ve been describing myself as Autistic rather than Aspie almost from when I was diagnosed (my diagnosis is Autistic Spectrum Disorder, specifically Asperger’s Syndrome so I was kinda diagnosed with both anyway), after talking to people with both diagnoses and seeing that there wasn’t that big a difference. I know that there are some people (especially parents) who will say that I’m not like their kid, but although I don’t have a learning disability along with autism, I do still have a lot of difficulties. I’m quite frequently non-verbal (at the moment I’ve been unable to speak for over a week). I have meltdowns. I self harm, including head banging. I used to flap, rock, and stim in other ways, until my ME got to the point where it’s no longer physically possible. I have obsessions. I’m over sensitive to noise, light, smells, touch, and taste, and that was the case before I got ME (though the ME has made it worse). I have a sensory need to have something in my mouth, so when I’m at home I have two dummies- one to suck on, the other to feel and sniff (I’ve spoken to one other autistic person who had a similar need, which made me feel a lot better about it as psychiatrists had made me feel really bad about it). So long as it’s not harming anybody, I don’t see why I should give it up, nor do I agree with having to appear as neurotypical as possible in public (which is exhausting and I can only manage for a short period of time anyway).

Johan shares some of my difficulties, and we both need support. Part of the reason my DLA form took so long to do was because neither of us were able to contact the right people to help us, due to our difficulties in communication (we both get exceptionally anxious and panicky when we have to try and communicate with someone we don’t know at all or very well, even by email which is our easiest method). Johan’s difficulties in executive functioning means that neither of us eat as well as we should (and my ME makes that harder). I’ve been asking for help with sorting out making appointments, contacting people and stuff for over two years, and I’m willing to pay for it, but we’ve not got anywhere and because of the difficulties that mean we need that support we’ve not been able to chase it up.

There are autistics who can manage completely independently. There are those who need 24 hour support. Johan and I are in the middle- we can help each other quite a bit, but even if I weren’t ill with ME we’d still need support with communication as we both struggle with that to the point where it can be harmful. Of course my ME makes things a lot more difficult, but I’m lucky because my autism makes some aspects of it easier to deal with, like only being able to keep in contact with people online and stuff as I normally found that easier anyway (though I do enjoy seeing my friends in real life). Also Johan is able to understand when loud noises and things are painful because he experiences it as well.

That ended up being quite a bit longer than I was expecting. The other things I wanted to mention were I’ve been shortlisted in the Autism Spectrum Disorder category for the This World in Mentalists awards, which I wasn’t expecting as this isn’t specifically an autism blog, though the subject comes up with me being autistic and all :-p Thank you to those who nominated me, it was very kind of you πŸ™‚

There are two blog posts I think are important to read about the realities of ME. Mine is severe but normally isn’t as bad as it can get, and these blog posts made me very grateful for what I can do. The first is from No Poster Girl, who has improved a bit but has written a blog post about energy use that is especially good for those who want to know what ME is like – A Thousand Things.

The second is by Jenny, who is currently living with very severe ME that makes my relapses look like a picnic. She’s written about how she’s still fighting after 8 years, despite doctors and others treating her badly (unfortunately very common in ME, partially due to Simon Wessley who pushes the ME is all psychosocial view) – When it hasn’t been your day, your week, your month or even your 8 years. I really hope that Jenny gets the chance to improve soon, as she deserves it.

 Posted by at 3:13 am
Nov 172012
 

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 πŸ™‚ )

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 Β 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 πŸ™‚

(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.)

 Posted by at 9:19 pm
Nov 162012
 

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.)

 Posted by at 7:27 pm