Category: Penguins!

Danni

How I Cope With M.E.

Autism, College, Computers, Danni, Gaming, Important Stuff, Interface, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft

For M.E. Awareness week I am blogging about living with M.E. On Monday I wrote about what M.E. is, and yesterday I wrote about how it affects me. Today I’m writing about how I cope with severe M.E.

Due to the severity of my M.E, I’m unable to do many of the normal everyday stuff that other people do. This doesn’t mean that I spend all my time moaning about stuff though (I do a bit of that when things are bad, but I try to limit it). I’m very lucky that I don’t have depression alongside my M.E, (in fact, I recovered from 12 years of severe depression a few months into getting M.E, which is hard to understand but I have my theories) so the motivation to do things is intact. It’s just my body doesn’t let me do them.

As I spend a lot of time lying in bed, I need something to do while there. The answer for me is the tablet computer I mentioned yesterday- my ASUS Eee Pad Transformer. Her name is Cameron 🙂 She runs Android Ice Cream Sandwich 4.0.4 with a custom rom (that bit’s just because I’m a geek) and she basically keeps me sane. On Cameron I’m able to use Twitter (I like the Plume app- I’ve made it all colourful), keep up with emails, read blog posts and websites, play Draw Something (and get complimented on my drawings as I’ve got a 10″ screen which makes it easier than on a small phone), communicate with other people either online or when I can’t speak or it’s too exhausting, and when I’m well enough I can watch videos or television shows, read books or listen to music on it 🙂 I’m also using it with the keyboard dock to type this blog post (the keyboard dock makes it like a netbook).

Twitter is an awesome source of support for me. As tweets are 140 characters or less, they’re short enough for my brain to process. I’ve met so many wonderful, supportive people on there, both with and without disabilities, and it’s so helpful to be able to talk to people who are going through similar things to me. I’m very fond of virtual hugs and squishes, especially as I’m often too ill for real life ones. The Spoonies* especially are amazing, as they’re all ill themselves yet try to help other people as much as they can. We celebrate each other’s acheievements, help each other with problems, and just chat and share things between us. I also get most of my news through there (often shared by someone I follow). Quite a lot of my day is spent on Twitter as it doesn’t make me more ill, and it’s a very postive thing for me.

I follow quite a lot of different blogs in my Google Reader, and try to read all the posts that are there. This doesn’t mean I necessarily understand them, and some of the longer ones can be quite hard (which I feel a bit bad about as I’m guilty of that myself) but it helps me keep up with things and follow what people are doing. Since reading is the easiest way for me to take in information, I read blogs in a similar way to how people listen to podcasts (which is very difficult for me- some people find it easier than reading but I’m not one of them) so it’s another good way for me to pass the time and feel like I’m doing something, even if I’m unable to comment very much at all. I also follow some I can haz cheezburger? and comic feeds that are normally good 🙂

My faith is very important to me, though it’s personal so I don’t talk about it all that much (it’s not that I’m embarrassed, it’s just something I don’t feel I need to share constantly). I’m a Christian (Anglican- mostly Anglo-Catholic though I’m very much for gay marriage, gay and female clergy at every level, and other “liberal” stuff) and knowing God is always there for me and Jesus knows what suffering is like is a constant comfort. I pray a lot, sometimes in words, most of the time without, and though I can’t make it to church I know He understands 🙂

I used to spend a lot of time on the AYME (Association of Young people with M.E) member forums, though now it’s difficult for me to get on there much. When I can though the support is awesome, especially from the other SAMs (severely affected members). I also receive emails and the magazine from them, and can contact them (or Johan can contact them for me) if I have any questions or I need help regarding my M.E. As most of the members are of normal education age it was especially helpful when I was attending college, as there were other people going through similar things. Although I don’t agree with their stance on some things (I’m not going to go into that here) the support I’ve had as a member, especially from the other members, is excellent.

I try to remain as positive as I can (this does not mean you should tell me or any other ill person to be positive- that just makes the person feel lousy). Everything I’m able to do is something to celebrate, even little things like being able to roll over and being able to eat solid food 🙂 I am so grateful for everything I can do as I’m aware it could be so much worse. I limit the amount of bad news I read- I don’t avoid it entirely but as I can’t process things properly or do anything about it there’s no point me getting upset. I like trying to be as supportive of my friends as they are as me- not sure I manage that but I do like giving out squishes 🙂 I hope they improve, especially those who are more ill than I am. I surround myself with things that make me happy- I have Penguin and Katie (my teddy) in my bed with me at all times (Penguin is normally in constant contact with me), Erica is close by, I have a penguin on my wall and a purple penguin canvas next to my bed. When we get the room decorated and the blind up it’ll be even nicer in here for me 🙂 I know and like who I am and although I hate my M.E, I don’t hate myself.

When I can do something, I take advantage of it (though I try not to overdo it as that leads to payback or relapse). Sitting at my computer and playing World of Warcraft (which I currently do about 2 or 3 times a week, though I’m trying to build that up) is a big thing for me, even if I’m not well enough to do progression raiding with my guild now (though when I’m having a good day I can sometimes do Looking For Raid as that’s easy). That’s the best distraction from the pain and how ill I am I’ve got, as I get into my character and what I’m doing so well. Sometimes we’re quite creative to let me do things- I originally discovered I could stay upright in my wheelchair to stay upright by tying a scarf around my chest, which meant that getting a torso harness allowed me to go out a few times. That was just amazing and the memories from then helped me stay positive during the relapse. My weekly wash is one of the best parts of the week, even though it is so exhausting and painful at the time and causes payback.

The main thing I do is listen to my body. I don’t concentrate so much on what or how many symptoms I have (though sometimes they’re pretty demanding for me to know they’re there ;), but more on how I’m feeling overall. I then judge if I feel up to doing something, and if I do I’ll do it. Sometimes I get this wrong and overdo it, but most of the time this works really well and it allowed me to build back up from the relapse in December, and it’s helping me recover from the relapse a few weeks ago. I don’t have structured rests breaks (trying to do that and track them was too exhausting), but most of the stuff I do is pretty low energy and I often just stare into space or just lie there with my eyes closed for 5-10 minutes, which seems to work just as well. Sometimes if I feel I need it I’ll either nap or lie with my eye mask on to rest completely. I sleep when I feel sleepy (which is slightly different to the exhaustion and fatigue I experience all the time) and do things when I feel able to do them. It means I’m not always awake at the same times each day, but trying to force a “normal” sleeping pattern just makes me worse.

On the more medical side, I take tramadol and ibuprofen for the pain, lansoprazole to protect my stomach from the ibuprofen (which also helps with my acid reflux and heartburn a bit), cyclizine to cope with nausea, Buccastem (buccal prochlorperazine) if I’m vomiting too much to take the cyclizine (which works better and for longer, but the Buccastem works long enough for me to take it) and I was meant to be taking vitamin D and calcium supplements but the form I was given (a powder to be mixed up as a drink) was intolerable so I need to ask the doctor for an alternative (when I was last tested for them my vitamin D levels were on the higher side of normal after intensive supplementation as I’d been severely deficient and my calcium levels were normal, so it’s not urgent but it’s to prevent any problems from occuring). These make life tolerable. Last year I was able to come off the psychiatric medication I’d been taking for severe depression (which had helped me a lot) without any relapse. That was a big achievement for me.

Every medical professional I’ve had dealings with since I’ve had M.E. has been very supportive. Some have been surprised at how severe my M.E. is (I then tell them that it can be a lot worse) but all have accepted it’s a physical illness and just want to help me be as well as possible and hopefully improve. This makes me exceptionally lucky, but being believed and knowing I have medical support there makes things so much easier to deal with. The main advice I’ve been given is to get lots of rest, and there has been no suggestion that I do exercise or get any counselling to think my way out of this, though I do see a psychologist and a physiotherapist (the CFS clinic people) to help with management. I did have to have depression ruled out as a cause but due to my history I understood why my consultant wanted to do that before confirming my diagnosis. My old GP recognised my M.E. and initially diagnosed me. My new GP hasn’t even met me yet but has already been very helpful with prescribing medication and contacting the CFS clinic to see how they can help more, and if I need one I can get a home visit (I don’t want to bother them if I don’t need to, and the things I need at the moment are minor so can either wait until I can get there or possibly be sorted through another appointment that Johan attends for me),

I get (or am in the process of getting) all the support I’m entitled to (at least as far as I know). My benefits are currently sorted, and although I’m yet to be transferred over to ESA I’m obviously ill enough and very easily meet the criteria to get into the support group, though I’m aware I may need to appeal for that. My main worry is the medical but I’m hoping my GP will support me for a home visit, and I already convinced one ATOS doctor for DLA. I’m also entitled to social care, around 15 hours a week, which should be in place again soon. That should help quite a bit. I also go into a care home three times a year for respite to give Johan a break, which helps him loads which in turn helps me. We’re also getting some people in (paid for from my DLA) to do some housework.

My friends have been amazing. Some of them don’t understand M.E. itself (I’m happy to answer any questions they have or direct them to information if they’re interested but don’t want to force it on people who may not want or may struggle to understand) but they’ve all been very supportive and stood by me when I got more ill. They understand that contact may be sporadic as chatting to people is exhausting but when I’m able to they’re just the same as ever 🙂 I’m unable to use Facebook much at the moment as it’s too confusing and exhausting so I don’t keep in touch as often as I like, but I like to see what they’re up to when I can and celebrate with them. I’ve already mentioned the Spoonies and my other friends on Twitter who are a great source of support, and as well as Twitter and Facebook I’ve also made new friends through AYME.

South Tyneside College helping me as much as they did and trying everything they could to help me achieve what I did and to try and help me continue was brilliant. I am sad that I just got too ill to finish my A Level, but I did get my A in AS Computing and I learnt lots at Interface (the autism unit) as well. A special mention goes to Simin, my Computing lecturer, the staff and students at Interface, and especially to Louise, who was my key worker/personal tutor the entire time I was there, and did everything she could to help me, not only with my autism but also with my depression and anxiety and then with my M.E. I don’t think I’d be coping anywhere near as well as I am without what I learnt at Interface and without the support that Louise gave me.

The main person who helps me cope with everything though is Johan. He is my husband and my main carer, and for both he’s been as supportive as he could be. He does everything for me that I can’t do, and helps me with everything that I need help with, and he doesn’t complain and acts like it’s no big deal (except when I’ve woken him up, but that’s understandable :P). He struggles with some bits (the carer and cleaners will help a lot with that) and needs a break when he can get one, but he rarely complains and just get on with it. Without him, I’d be in a care home (which would be worse for me, especially long term). I love him so much and he helps me deal with life so well, and I’m so much happier being with him. I know he feels the same 🙂 He often doesn’t realise just how much he does for me, but he’s giving me the best life I can possibly have with this illness and I’m extremely grateful for that. He is awesome 🙂

I was hoping initially that this post would be shorter than yesterday’s, but it’s turned out longer. I think I like that my coping post is longer than the post talking about how I’m suffering 🙂

*For the Spoon Theory, see butyoudontlooksick.com. It’s a very good, simple way to describe living with a chronic illness, especially one that can fluctuate like M.E or Lupus (which the author has) does. Some of us who use it call ourselves Spoonies.

Danni

1 Penguin, 2 Penguins, 3 Penguins, 4, Purple Penguins, Sparkly Penguins, Flappy Penguins, More.

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

Title has nothing to do with anything other than my love for penguins.

My sleep is still all over the place, but I’m mostly in hypersomnia mode. Having long naps on top of long sleeps. This is good as it is what my body needs to do to get over the relapse- every sleep is another step towards being just that bit better.

I am frustrated as pain levels are still higher than normal so I’m still taking double tramadol. The double tramadol is working fine so I should be happy about that, but it’s just a reminder that I’m still doing worse than I was a few weeks ago. Also when I take two tramadol I feel all woozy and dopey and sleepy, which doesn’t happen when I only have one, so there is that to think about as well. My current pain levels though require it.

Johan is regularly brushing my hair for me. This is nice and good- something simple that makes my life more pleasant and also lets me be close to him. It’s also letting me practice sitting up unsupported- my back muscles are very weak so sitting on the bed with Johan behind me is a safe way for me to do so without worrying I’m going to collapse and hurt myself. Luckily I’ve not even come close yet 🙂

Yesterday I managed my computer for a bit (probably too long) and went into World of Warcraft and did all the orphan quests on Danni. I now have all the pets (including the new ones from last year) and some pet biscuits from the Northrend one 🙂 If I get the chance I’d like to do them on Tiarna as well (which will be quicker as she’s a Mage) but it’s not essential. I also did our monthly budget for May so I know where we stand money-wise. Things are a little tighter than I’d like this month (a few one-off things that are coming out) but we still have enough slack in the budget for anything I’ve forgotten or any emergencies and stuff- which is good as I have a feeling the World of Warcraft subscriptions may be coming out. I will have to check now 😛

Just checked my account- mine is coming out 22nd May and I think Johan’s is only a couple of weeks after, so I will need to add them to the budget. Not a problem though as I can afford them, but I won’t be buying the Collector’s Edition of Diablo 3. That is a shame, but I’m getting it for free with the WoW Annual Pass so it will only be the extras I’ll miss out on (I can technically still afford it but I’d rather keep the money for emergencies).

Also yesterday I bought a new pair of trousers. Since I lost loads of weight the only trousers I’ve been wearing are leggings (and a pair of too-short tracksuit bottoms inside), and the ones in my size that I’d bought by mistake ages ago are too scratchy for me to wear now (touch sensitivity is worse with the M.E so I can’t tolerate many textures, including jeans). The new trousers are a linen/cotton blend, which I normally tolerate rather well, and are purple 😀 They’re in the long size which is important as I have silly long legs (36″ inside leg when standing) and trousers appear even shorter when sitting down. I may show some sock but that’s okay as I have some really cool ones- rainbow ones or purple ones or penguin ones 😀 It will be nice to wear a pair of trousers again, as although I love my leggings and skirts sometimes I want to wear something different.

Apart from that I’ve mostly just been on the internet. A little bit of Twitter, catching up on blog posts in my reader, and in a bit I’m going to read more of the Blogging Against Disablism Day posts. I’ve also had lots of cuddles and handholds with Johan (I can cuddle a bit again! Yay!) which is really nice.

As I spend so much time lying down, I do a lot of thinking. Some of this isn’t important, some of it is stuff like ideas for future blog posts (I have lots of ideas, just not the spoons to write them yet as they need a bit of research), and some of it is reflecting on things I read. For Blogging Against Disablism Day Ballastexistenz wrote two blog posts about caregiver abuse, which made me think a lot. I’ve been lucky to only be on the receiving end of the milder types of abuse (mostly neglect and refusal to take my wants and needs into consideration) though obviously that’s bad enough. The main thing I’ve been thinking about though was about the power imbalance between the carer and the person being cared for.

What is interesting is that I don’t feel there’s much of a imbalance in power between me and Johan. Yes, he’s physically a lot more capable than me and if he wanted he could use that against me, but when it comes to everyday life I feel equal to him. Some of this is because I do as much as I can- I manage most of the finances (Johan discusses them with me, and we come to decisions together most of the time, but the money goes into my account and I sort out where it’s going each month), I normally do most of the shopping order, and I keep track of what needs to be done and when. The other reason is that I know that Johan won’t ever deliberately harm me (I know he’s capable of it, but I also know he’d never forgive himself if he were too- he’s terrified of hurting me and I have to reassure him he won’t a lot of the time) so I feel safe with him. This means that it’s easier to accept him doing things for me, including very personal tasks involving washing and stuff. He always takes what I want into consideration, and I also care for him while he cares for me, in that I help him with the things he struggles with and try and help him with his mental health. I’d love to be able to do more, but with my M.E this bad that’s not possible at the moment. We also both spend about half the day telling and showing each other how much we love each other, which is always a plus 🙂

I think that’s one of the advantages of both of us being autistic. We’re very open and honest with each other, and we’ll talk about things (even if Johan does have to remind me not to talk too long as it makes me ill). If anything were to bother me with how he’s looking after me (or anything else, for that matter) I can and do talk to him about it, and if he’s able to change things he will. It’s the same for him- he’ll tell me if I’m doing something that bothers him, and if I can I’ll try and change it so it doesn’t anymore 🙂 I also have friends I can talk to if I ever want to talk to someone else about things, and I’m trying to encourage Johan to find his own support to help him cope with things (probably with the Carer’s Association, as it’s close by now). We both acknowledge that we need time alone sometimes, and even if it can’t happen physically then we can manage it by being in separate rooms and doing different things. As Johan respects my needs, I try to respect his as well. It’s also why respite and breaks are so important- it gives Johan a chance to charge his batteries, and it can help me as well.

I want to go to Edinburgh on holiday this year. Johan is also happy with this idea, so long as I’m well enough (I’m not currently, but I’m hopeful I will be in a few months). It’s harder to do a cheap break away now that I can’t walk at all so everything needs to be wheelchair accessible and things, but I’m very good at finding cheap train fares and cheap places to stay (I normally find Johan’s, and my siblings tend to come to me as well) so I’m sure we can manage it even on a tight budget. The main reason I want to go to Edinburgh is the penguins- there are so many at the zoo and it’s perfect for Danni’s. I also want Johan to do something he enjoys while we are there- not sure exactly what but I’m sure he’ll be able to find something (there’s a really cool museum we went to last time that may be good to go to again if I’m well enough). If I’m not well enough for it this year then there’s always next year.

The other places I want to go are London to the Mad Up in June (although that’s not looking very likely at this stage for me, Johan might be able to make it again though) and Leeds to see Johan’s family. I’m sure someone will look at this and think that we get far too much in disability benefits, yet most of it is because of money management and the fact we live very cheaply. Neither of us drink most than very occasionally, neither of us smoke, when I am well enough to go out we tend to go to rather cheap places and the only nights out Johan does are Barcraft, which since he doesn’t drink much works out very cheaply. I’ve said before that I feel rich on the amount of money we get in, though when compared to what we’d get if both of us were working it’s not very much at all.

Of course being stuck in bed most of the time means that now I have most of the equipment and things I need there’s less for me to spend my DLA on (other than the things like extra heating and a higher food bill as what I’m able to eat is changeable), but as soon as I become more mobile the costs will go back up again. If someone could cure my M.E tomorrow I’d grab it with both hands, and happy look for a job as there’s nothing I want more than to be able to work. It’s frustrating as I saw the perfect job for me advertised- working from home data entry, around 40 hours a week. Pay was a little more than minimum wage. And I’m not well enough to do it- if there was even the slimmest possibility that I could have managed it I would have applied immediately, but I’m just too ill. I don’t want to be on benefits but I’m grateful they’re there.

Since I’ve upset myself now thinking about all the scrounger rhetoric and stuff (I really need to stop internalising it) I think I’ll go watch some penguin cam – that always cheers me up 🙂

Danni

Penguins and Pyjamas and Sofas

Danni, M.E., Penguins!, Physical Disability, Real Life

As it’s the early hours of the morning, it is normal Danni blogging time. I am not entirely sure why I blog at this time, but it may be because I’m slightly bored and Johan is asleep.

Later today there is a Mad Up happening in London. I am not well enough yet to go, but I am sending Johan and he’s taking Erica (one of my penguins) on my behalf. There will be lots of friends there and I’m hoping if Johan can get a signal to say hello over Google Talk. My brother Martin is coming to look after me, and is staying overnight. I’m happy I can manage the commode by myself now or Johan wouldn’t be able to go (I feel a bit uncomfortable with my brother providing that sort of personal care).

I bought an iPhone 4S. I feel kind of bad about it as I thought I should never buy an Apple product, but it’s nice. It just works, and there are better, more polished apps for it than for Android, especially communication ones. I have yet to decide what communication app to go for- the best is Proloquo2Go but that’s nearly $200 and I’d need to save for that. There may be others that are suitable that are more in my price range but I’ll have to do some research.

I’ve not been out again since Sunday. I got some mild payback (extra tiredness and pain) but nothing too serious from it, then on Wednesday (I think) I had tramadol withdrawal symptoms as I’d forgotten to take any for over 24 hours. As I’ve been pretty reliant on it since my December relapse, my body did not like suddenly going without. I felt really ill, had a lot of pain, sweating, and was nauseous to the point of heaving. I took a tramadol and a cyclizine to deal with the nausea, and fell asleep for the day. Since then I’ve been really out of it, which is noticeable to Johan. Chatting and concentrating are much harder than it was at the beginning of the week, and they weren’t exactly easy then. Hopefully it’ll ease off soon.

Good news: we’ve found a GP surgery, and so far they’ve been awesome. They let Johan sign registration forms on my behalf (even signing things is very painful for me at the moment), made an appointment with the GP for me for medication before I’d been to the registration appointment with the nurse, and didn’t ask for loads of ID like the last surgery did. I was meant to go to the GP yesterday (Friday) morning for my meds (I was out of tramadol completely), but getting ready made me too ill to actually go. Johan phoned the surgery to ask if he could attend on my behalf, they agreed, and so he did so.

The GP he saw was brilliant. From what Johan has said she seemed to understand M.E. pretty well, asked if I’d been diagnosed by Dr. S, my consultant, and was quite happy to prescribe 100 tramadol and 1 litre of ibuprofen liquid for me (he didn’t ask for any amount). When Johan explained our fears of getting a GP who thought that M.E. was all in the head or would want me to go for CBT or GET she said something along the lines of that although they don’t know what causes it or how to fix it, they’ll just do what they can to help manage it. That’s exactly what I want and need from a GP, and she even mentioned that 100 tramadol would last me 12.5 days 😛 (that is how long it would last if I took the maximum dose constantly- at the moment it normally lasts me around a month). She did say she’s not there all the time so we probably won’t see her much, but if the others in the surgery are even half as good we’ll be happy. I can’t believe how lucky I am with doctors.

I was also meant to see the nurse for the registration appointment in the afternoon, but Johan rearranged that for next Tuesday. He still went to his though, and from what I gather the nurse was really nice, to the point where his pulse and blood pressure were perfect. This means he wasn’t that anxious- he said that she spoke to him in a way that relaxed him. I do know that when he came home he wasn’t anxious, which is very unusual for him (especially having been to the doctors). He said it feels more like a community surgery than the other one we tried, and it also has the advantage of being the closest one according to the NHS website (which wasn’t working when we first looked, or we’d have known about it earlier).

I have a new GP appointment in a couple of weeks, as I have a couple of things I want to discuss in person and it will mean they have a better idea of who they’re dealing with. Both the nurse appointment and the new GP appointment are in the afternoon, which should mean I’ll be able to get there, as even when I’ve not been up all night I’m useless in the morning.

Other stuff… I got a pink Curve Connect Trabasack 😀 I loved my normal black one, but since I’m so clumsy now we were thinking of getting me a connect one (you can use velcro on it to hold things on) and Johan wanted a normal one because he broke the old one. So he’s got my old black one and I’ve got the nice new pink one. I’ve not attached anything to it yet as got to figure out which velcro to use for what (there are two different ones, one is more secure/harder to pull off than the other) but I’ll be putting some on the back of my tablet to secure it to it, with something to cover the velcro for when I’m not using it. I was thinking a cloth but now I’m thinking I could make a sign or something and attach that to the velcro 😀 While in Taybarns on Sunday I was able to use the black Trabasack to put my plate on while Johan was pushing me around so I was able to go up to the food counters myself and choose exactly what I wanted to eat, instead of having to send Johan to guess like we used to do. It was also steady enough to put our drinks glasses on while he was pushing me. Johan is taking the black one to London to hold all his techy stuff. This time he is not going to try and carry all his clothes and toiletries in there as well (which is what completely broke the old broken one) but is taking a backpack as well.

I’ve also ordered a wheelchair cushion and a cutlery handle thing to try and make things a bit easier for me. They’ve yet to arrive.

I watched some proper telly last night for the first time in a bit, just lying on the sofa. Supernanny US, Have I Got News for You, some Graham Norton and Matt Lucas as they were on. Nothing that requires any real concentration (like The Big Bang Theory- I’ve had to give up on that for now :'( ) but it was good to do. I’m also wearing my favourite pink penguin pyjamas which were clean out of the dryer so I’m happy 🙂 Overall I’m not doing brilliant but I’m happy enough 🙂

Danni

Being Happy- Danni Style

College, Danni, Important Stuff, Interface, M.E., Mental Health, Penguins!, Physical Disability, Real Life
Happy Danni
Happy Danni

I am happy. Considering there was a 12 year period where being happy was exceptionally difficult, being able to say that on a near daily basis is awesome. There are lots of things that make me happy.

I like penguins. Seeing penguins makes me smile- it’s very difficult for me to be sad or upset for long when I am around and aware of penguins. When I was depressed I wasn’t able to be properly aware of penguins, so they couldn’t make me as happy as they do now. My living room is covered in penguins, and everytime I spot one I get a rush of happiness in my brain.

I like the colour purple. Purple is nice and calming and reassuring. I also have quite a lot of purple, as it’s my favourite colour. I covered my wheelchair in purple fabric. When we move house my bedroom is going to be purple (and possibly the living room as well).

I have some amazing friends. Most of them are online- I talk to them on Twitter, Facebook and AYME. These are people who make me feel good about myself, which in turn makes me feel happy. I have reduced my contact with people who get me down, which has also helped. Funnily enough, a lot of my friends have depression or other mental health problems, but because they are so nice and kind even with their illnesses they are a positive part of my life rather than a negative.

Reading blogs and being in touch with people on Facebook and Twitter helped me recover from my depression. Being able to read about other people’s experiences and seeing that I wasn’t alone made it so much easier to get out of the hell I was in. Blogging myself (on my old blog) also helped a lot, as it let me get some of my thoughts and feelings into a way that I could understand them. Being on the right medication also helped, as did having doctors (GP and psychiatrist) who listened to me, accepted me as I was, and stopped trying to force me into boxes that I don’t fit into.

Being diagnosed with autism was also a major step in the right direction for me. I had an explanation for why I was different to other people. I came across autistic adults on the internet who were able to teach me mostly through example that being autistic is okay. Accepting my autism made my life so much easier. I’d especially like to thank Kassiane S., Amanda B., Laura T., Laura R. and those who used to go to the Autistic Liberation Front meetings in Second Life for chatting to me and helping me through the period before and during diagnosis, and while my life was turned upside down.

My old social worker Balamory was also a massive help in my quest to recover from depression. She noticed my autistic traits and badgered lots of people on my behalf, helped me find acceptable housing when I needed it, and also found and helped me attend Interface, the autism unit I used to go to. I wish I had a way of letting you know how far I’ve come since I first met you.

Interface was a massive help. It was my first experience of specialist education, and it allowed me to be successful at college for the first time. There were lots of skills I learnt there that I needed to know to help my independence, both taught on the curriculum and learnt just by being there and with the help of the staff, especially my keyworker Louise. Being able to attend such a brilliant facility just after receiving my diagnosis and having a safe space to just be myself made college doable, even while I was still very mentally ill. Without Louise I don’t think I’d be where I am now.

Learning to be myself again was probably the biggest thing that has made me happy. I spent many years trying to fit in with everyone else, and not quite succeeding. Learning that I was autistic, that being autistic is okay, that being different is okay was one of the best lessons I could have learnt. Once I stopped surpressing my need to move (rocking, flapping, pacing, bouncing) in safe places (at home and in Interface) and then gradually becoming less concerned about doing some of the less extreme movements when out in public meant that I could control my anxiety and actually manage with stuff without it becoming overwhelming. Listening to music, wearing ear defenders, wearing tinted glasses, carrying a pen, my stones and a penguin of some kind with me everywhere are all things that don’t affect anyone but help me to deal with things. Rocking and flapping may look a bit odd, but they don’t hurt anyone and are much better than biting myself or melting down (which sometimes results in head banging).

At home I’m free to not do anything to try and fit in. I play with language- making up words, messing with grammar, talk about random things when they pop into my head. Colin, Vicky and Johan know this very well 🙂 I also do some of the stuff that people are less understanding about, such as having something in my mouth a lot of the time (sucking on things reduces my anxiety and helps me concentrate), humming and random singing, making noises with hands and fingers, wrapping myself tightly in my quilt, piling pillows on top of myself. I also ignore “age appropriateness” when at home, so can go from discussing politics or science or other “grown up” topics to talking in very simplified language about wanting penguins or jelly within seconds. I also play with my wooden blocks, and can spend hours just looking at my colour changing lights or sparkly things. One of the things I want is a sensory room or area with soft flooring and nice lighting and reflective sparkly things where I can spend time just to be myself and not have to worry about things like bills or food shopping or anything else that is difficult for my brain. I was originally going to use the space behind the top of the stairs in our flat (maisonette), but since I can’t walk or manage stairs now and we’ll be moving, it’s been put on hold until we move so I can figure it out when there.

Sammie also makes me happy. As much as I wish I could have her living with me and that I could look after her myself, accepting that I wasn’t in the right place for that (before with my mental health problems, now with my M.E.) and that she is doing so well with her grandparents and is happy herself is enough to make me very happy. I have been terrible at keeping in contact with her, but I’m trying to fix that as I love her more than anyone else in the world.

Johan is just amazing. I am so lucky to have found someone who accepts me for who I am, who has similar interests, and who I love being with and spending time with. That he voluntarily took on the role of carer, both with my mental health problems and now with my physical health problems, while he was struggling himself makes him my hero. I does help that he seems to love me as much as I love him, and I would quite happily spend the rest of my life with him.

Colin and Vicky also took on the carer role for me, going way beyond what was needed as a friend. Both of them helped me to become more independent, and that also meant it was easier to learn to be happy. I will be eternally grateful to both of them for this.

All of this- learning who I was and accepting me for me, learning I wasn’t alone and that there were other people who had similar experiences or similar ways of thinking to me, making some amazing friends who help me feel good about myself, some great support from some brilliant people, having a happy daughter, being in a loving relationship, feeling safe and secure and able to be me, means I was able to recover from depression and be happy. And I like it.

Danni

2011 In Review

Danni, M.E., Mental Health, Penguins!, Physical Disability, Real Life

I did this last year, and enjoyed it so will repeat it for this year.

1. What did you do in 2011 that you’d never done before?
Had an entire year as an adult without depression 🙂 Also, got an A in an AS Level exam 😛

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I mostly kept to them, and have made more (see previous post).

3. Did anyone close to you give birth?
Not that I know of.

4. Did anyone close to you die?
No.

5. What countries did you visit?
I stayed in England this year.

6. What would you like to have in 2012 that you lacked in 2011?
My health would be nice…

7. What dates from 2011 will remain etched upon your memory, and why?
26th December. I made a phone call to Sammie for her birthday and didn’t panic!

8. What was your biggest achievement of the year?
Probably improving my phone phobia, though passing my exams was cool too 😛

9. What was your biggest failure?
My body. It decided that it wasn’t already annoying me enough and made things a lot harder.

10. Did you suffer illness or injury?
My M.E. got a lot worse, resulting in me being completely bedbound at times, and mostly bedbound for about half the year. Also lost the ability to walk completely, so when I could get out of bed I had to use the wheelchair. I also had some teeth taken out under a general anaesthetic, with one of them having been bothering me since 2010.

11. What was the best thing someone bought you?
Sammie bought me a World’s Greatest Mummy cup. She also made me a penguin. (I do appreciate the penguins other people have given me this year, but Sammie wins. Sorry.)

12. Whose behaviour merited celebration?
Johan’s, for looking after me, and my friends on Twitter and AYME for being so nice, kind and understanding (that includes all of you with depression).

13. Whose behaviour made you appalled and/or depressed?
Most of the Tory and Lib Dem government.

14. Where did most of your money go?
Bills and disability equipment.

15. What did you get really, really, really excited about?
PENGUINS!!!!!! 😀

16. What songs will always remind of 2011?
Forever Yours by Alex Day.

17. Compared to this time last year, are you:
a) happier or sadder?
Happier.
b) fatter or skinnier?
Skinnier. I keep losing weight. I’m happy with it, and want it to stay the same now, but I don’t seem to have much control over it.
c) richer or poorer?
Richer

18. What do you wish you’d done more of?
Probably blogging.

19. What do you wish you’d done less of?
Pushing myself too hard.

20. How do you plan to spend Christmas?
I spent Christmas in bed, being waited on by Johan and watched Doctor Who. Happiness.

21. Did you fall in love in 2011?
Nope, but I made some new friends who I love 🙂

22. How many one night stands?
Since I haven’t been able to get out without Johan all year, I’d wouldn’t have been able to even if I wanted to (which I don’t, as I have Johan).

23. What was your favourite TV programme?
Doctor Who!

24. Do you hate anyone now that you didn’t hate this time last year?
Still don’t hate anyone. Dislike the government.

25. What was the best book you read?
Either Sapphire Battersby or the Hunger Games series.

26. What was your greatest musical discovery?
Alex Day and Chameleon Circuit.

27. What did you want and get?
Penguins! An A in my AS Computing. I also got the new television I wanted last year 😛

28. What did you want and not get?
My health to improve. Instead it got worse (I am not happy with you, body).

29. What was your favourite film of this year?
Harry Potter and the Deathly Hallows Part 2.

30. What did you do on your birthday?
Received a big DLA back payment, so bought a television 😛 I also ate Doctor Who cake. The day before I’d gone to Flamingo Land with Johan and college so got to go on the rides and see the penguins, which was awesome.

31. What one thing would have made your year immeasurably more satisfying?
My health being better, though to be fair the year was very satisfying anyway 🙂

32. How would you describe your personal fashion concept in 2011?
Purple and pyjamas.

33. What kept you sane?
Chocolate, penguins and Twitter 🙂

34. Which celebrity/public figure did you fancy the most?
Summer Glau (still).

35. What political issue stirred you the most?
The government making things even harder for poor, ill and disabled people. Stupid idiots.

36. Who do you miss?
Sammie, as I’ve not been well enough to see her this year, though I am in contact with her.

37. Who was the best new person you met?
All my new friends on Twitter and at AYME 😀

38. What was the best thing you ate?
I’m not sure. At times just being able to eat was amazing 😛

39. Tell us a valuable life lesson you learned in 2011?
It’s a really good idea to listen to your body if you’re ill, otherwise it may rebel against you.

40. Quote a song lyric that sums up your year:
I can’t think of a song lyric 🙁 Giving up after about half an hour of trying to think of one.