Category: Autism

Danni

Autistics Speaking Day: How Autism Affects Me Now

Autism, Danni, Important Stuff, Real Life

It’s the 1st November, which means it’s Autistics Speaking Day again. This started last year as a response to Communication Shutdown, which luckily isn’t being repeated again. My post from last year is here, and the website is here.

I was diagnosed with Asperger’s Syndrome when I was 21. Since then I’ve learnt lots of ways to deal with some of the more difficult parts of it, mostly thanks to Interface (the autism unit at South Tyneside College). This doesn’t mean I’m “cured”, though. I was born autistic, and will be so the rest of my life. I still have a lot of difficulties, and the M.E. also makes it worse. Here’s how it still affects me.

Over-sensitivity to noise, light, smell and touch.

That’s all the senses except taste, where I may be over-sensitive a bit (I can’t cope with spicy foods, and much prefer plain foods) but it’s a lot easier to control. My reactions to these are a bit less extreme than they were, but it’s an area where M.E. makes things worse. I normally wear sunglasses when I’m outdoors, I have ear defenders to wear when it’s noisy (which I often have to wear if I go out in public because of the noise of traffic, people and things) and sometimes listen to music to drown out other noises (often with the ear defenders). M.E. in itself causes over-sensitivity, so for me it just means everything feels a hundred times worse when I’m having a bad day. On those bad days, I lie in bed with an eye mask and ear defenders on (because the normal noises around me and all light is too much) and no-one can touch me as even my pyjamas and bedclothes feel like torture. As for touch, I do not like people touching me, but as I’m unable to do things for myself I have to allow it. I am getting better at coping with it when it’s not a bad day, and even let a stranger put make-up on my face a while ago. I also can’t cope with strong smells as they make me feel like I can’t breathe, and some of them make me vomit.

Problems with communication.

Communicating with people uses a lot of energy. It takes energy to listen to people, process what they’re saying, and then respond in a way that they can understand. This is another area that M.E. makes more difficult, as I can no longer just throw more energy into communicating. I am verbal most of the time, but I have more times of being non-verbal than I used to, since I became more ill. I become non-verbal when I’m overwhelmed. With autism it’s from sensory overload, and the M.E. causes it when I’m overloaded because of pain. This can cause problems- when I was in a care home earlier this year I was unable to answer open questions, became non-verbal and wasn’t able to communicate that I needed a drink or the toilet so went without for 19 hours. We have similar problems with the home carers (especially since Johan has the same problem answering open questions) but most at least some of the carers are learning to work around it.

I’m also unable to use the telephone as I struggle to hear what the other person is saying without being able to lip read, have to respond almost instantaneously, and it makes me very anxious. A lot of places still don’t allow communication by email, so I’m reliant on my husband to phone for me. My favourite so far is the National Autistic Society phoning me twice (once on my landline, once on my mobile) and insisting on talking to me. When my husband told them I couldn’t talk on the phone, they asked why, then one of them didn’t understand when my husband said it was due to my autism. They said they were going to write to me about what it was, but so far I’ve not received anything, and it was at least a month ago.

Meltdowns and shutdowns.

This is hard for me to talk about, as I don’t really want other people to know what I’m like at my worst, but since they’ve been happening more than normal recently I should probably mention them. A meltdown is similar to a panic attack in appearance (I also experience panic attacks) but it’s not the same inside. With a meltdown I lose complete control. I say my brain explodes, as that’s how it feels. I’m so overwhelmed by all sensory input, all my internal feelings, all emotions that I just can’t cope. I may scream, may hit, bite or scratch myself (I keep my nails short after scarring myself during a meltdown), and there’s nothing anyone can do to stop it other than wait it out. Unlike a panic attack, I don’t have enough control to end it as I can’t think at all, it’s just a massive amount of badness in my brain. Afterwards I’m completely exhausted, and need to sleep (this was true even before the M.E.). They used to be very rare, happening at most once a year, but they’ve happened a few times this year because of issues with carers and things.

A shutdown has the same brain explodiness, but instead of it being expressed outwards I just stop doing anything. I don’t move, don’t respond to anything, can’t hear, can’t think. I will remain in the same position for however long it lasts, which can be hours. Again, it’s exhausting and I’ll need to sleep when it’s over.

Anxiety and panic attacks.

Anxiety is common in autistic people, and I’m no exception. I do not like change, and though I don’t need a set routine as such, if there is a timetable then I don’t deal well with it being changed. I also become anxious if there’s too much sensory input, as my brain can’t process it properly. An interesting cause of anxiety is related to the dislike of change- I can’t cope if my carers arrive early (though can if they come late). This is because I have to mentally prepare for them invading my personal space, expecting me to communicate with them and possibly touching me. This takes time, so if they come early I’m not prepared and panic. I also panic if my anxiety builds up and I can’t get rid of it, or if there’s a sudden loud noise or someone touches me unexpectedly (especially if already anxious). When I panic I can normally calm myself down pretty quickly if the trigger is removed, but it is very tiring. If people talk to me, touch me or tell me to breathe (for some reason, trying to control my breathing causes me to become very anxious and panicky) then it will last longer. I used to rock, pace or flap to reduce my anxiety, but my M.E. means they’re no longer an option. Most of the normal suggestions (breathing, relaxation exercises, and things) don’t work or make things worse, but distraction sometimes work so I may listen to music (which also has the advantage of blocking out noise).

Lack of body awareness.

This one didn’t used to be a big problem, but since I became ill it’s more of an issue. Most of the time, I have no real awareness of my body. This means I’m not sure where it is in space, what it’s doing, and how it’s feeling. The reason this is a problem is because often I’m in pain (M.E. causes muscle and joint pain, headaches, sore throat and other pain issues) but I’m not aware of it, or if I’m aware of it I can’t tell where it is. I get asked a lot by doctors where the pain is, and it can take a long time for me to figure this out, if I ever do. The doctors don’t really understand how someone can be in pain, but not aware of it or where it is. Luckily for me, Johan is pretty good at telling me when I’m in pain (I tend to get crabby with him) so I can take painkillers.

———–

There are probably other areas where autism affects me, but brain fog means I can’t think of them right now. You may notice that social interaction isn’t there. That’s because it’s not a problem for me at the moment, as I’m pretty much housebound so the only people I really interact with in person (other than my husband Johan) now are doctors and carers, and I have scripts to deal with those situations. Johan understands me very well- he knows if I can’t speak I will type and use gestures to communicate, knows what to do if I’m panicky, in pain, overwhelmed and things. He also has some of the same issues I do, and is currently being assessed for autism.

There are many positives to being autistic, and I wouldn’t want to not be, as it’s a part of who I am. But just because I am able to type well, speak (most of the time) and before getting M.E. able to live pretty independently it doesn’t mean I don’t have my problems due to it, and I still need help to deal with them. I’m getting there though 🙂

Danni

Okay Body, You Win

Autism, College, Computing, Danni, Interface, M.E., Physical Disability, Real Life

Since Monday, I have finally realised that yes, I am actually ill. This may seem silly, but even though I’d accepted that I had M.E. and that it was affecting me, I wasn’t accepting just how ill I was, so still trying to do things I really shouldn’t be doing. I’ve learnt my lesson.

On Monday, I went to college. I vomited on the bus on the way there, as sitting up for more than 10 minutes = bad idea, and motion on top = even worse idea. Turns out other bus passengers are either disgusted or concerned when someone is throwing up in front of them. When I got to college, I lay on cushions on the floor of the chill out room as I couldn’t do anything else, and did not make it to my lesson. It was the first time anyone at college had seen me that ill, though it’s been my normal level for the past month. I went home in a taxi about 2 hours later, and was vomiting in there, too.

Tuesday I had an appointment at hospital about my teeth. Got there on time, went for an x ray then had to wait nearly 2 hours to see someone. If I’d known I’d be waiting that long I would have cancelled the appointment. When going through the list of medical issues, I finally realised just how bad I’ve got. Had any blackouts? Yes (once just after using the commode while having a bad day, the other time after trying to sit up in bed, also on a bad day). Any seizures? No, but I get jerks in my limbs that can throw me off the bed, as well as muscle spasms and milder jerks in my limbs that last for hours (and can jerk me out of my wheelchair, with the seatbelt on). Dizziness? I can’t remember the last time I wasn’t dizzy, but it can get really bad if I sit up, even on normal days.

I managed to contain the vomiting on Tuesday by swallowing it. Not nice, but I didn’t want to upset any other bus passengers. I’d also lost 4lbs that week, as I found out at Slimming World on the Tuesday morning (too ill to go really, but I was still being stubborn). That was in the week I wasn’t really following the plan.

So what’s come out of this? I checked where I am on the AYME functioning scale again. Answer: around 10-15% normally, lower on a bad day. No denying I’m severely affected any more, though it’s still hard to accept. When I was going out, yes I could do it, but I was trying to ignore how ill it was making me. I’ve asked how to join the SAMs (severely affected members) list at AYME,

I’ve told my tutor that even distance learning isn’t going to be possible, as I’m just too ill. I can’t even concentrate on a TV show all the way through without it making me more ill, so trying to study would be far too much (not to mention I’ve already fallen behind and not heard from my lecturer about what I’ve missed). So I’m going to be withdrawn from the course. I’ve also let the Interface students know via the Facebook page. I’m really going to miss college, as it was the last bit of normality in my life, but I need to keep what functioning I still have.

I’m also putting Slimming World on hold, at least for now. The meetings are making me more ill (as much as I didn’t want to admit it) and trying to follow a diet while spending so much time nauseous is probably not the best idea. Also, since coming off the quetiapine my appetite has reduced drastically, so I’ll be able to lose weight just be being sensible with what I eat. I’m also not going to pressure myself to lose weight- I just don’t want to gain any. I’ll be weighing myself at home every Tuesday morning on the Wii Fit to monitor it, and will change what I’m eating if I start gaining, or losing weight too quickly. I shall be emailing my Slimming World consultant after I’ve finished this blog post.

I’m also not going to be having any more baths, at least until the bath lift is fitted. I’ve been stuck once, been close a few more times, and it’s not worth making myself ill over. We tried washing my hair in the sink, but I’m too tall to make that work, so I’ve bought an inflatable hair washing thing for use on my bed. Bed baths are also a lot less tiring than washing in the bathroom, so it will be better overall (I still get exhausted when trying to do it myself, though).

No more going out unless it’s necessary. I’ve a doctors appointment on Tuesday, so will be going to that. I will also be going to the hairdressers next week. This may not seem necessary, but it’s been over a year since I last got my hair trimmed, and getting it done will make it easier to brush. It will also allow me to get my hair washed outside of bed :p Today nice Icelandic carer put my hair into a French plait, which keeps it pretty tidy even spending 22+ hours a day in bed.

I’m also slowly compiling a list of all my current symptoms, that I’ll be giving to my GP and consultant. Hopefully they’ll have ideas on how to deal with some of them, but if not, at least it will mean they’re aware of them. I’m also trying to figure out the baseline for activities, but this is hard as it’s in direct competition with my problems with transitions (if I try and stop an activity before I’m ready, then I get incredibly anxious and may panic, which uses more energy than just continuing the activity for a bit longer). I have made it so I’m only sitting at my computer for an hour at a time, maximum, and reminding myself after half an hour and 45 minutes that I’ve only so much time remaining. That worked well today- came off after 45 minutes because I’d reminded myself after half an hour, and I was at a good stopping place in levelling on my mage in World of Warcraft 🙂

I’m not doing so well on the getting to sleep at the same time every night, but I’m less worried about that. I managed 12 hours yesterday (from 1am to 1.30pm, with a half hour dozy resting period when the carer arrived at 10am) so it looks like I can sleep naturally. It does mean that it’s 2.08am now though, and I’ll probably not be going to sleep before 3am. Oh well- one thing at a time.

Danni

Project 365: Day 5: 22nd June 2011 – Prom

Autism, College, Danni, Interface, Project 365

Prom

Woke up very late today, gone midday (I can’t remember exactly when). Was totally exhausted, and felt pretty rough. Was unsure whether to go to the prom today, but after much dithering decided to go. Got ready, then we left.

The Prom was brilliant 😀 There were most of the Interface students, both current and past. It was nice seeing some of the old students again 🙂 It was quite loud, but alcohol works brilliantly for pain, anxiety and copingness, so I managed okay. Even danced a small bit in my wheelchair 🙂

I had a great time, and I think other people did too. Got home just before midnight, and have been looking at motability cars since 😛

Danni

International M.E. Awareness Day

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

So, I failed with the 30 Day Song Challenge. I’m currently not well, and have spent the last three days in bed (though I did manage to get a bath today, which helps make me feel a bit more human at least). I can’t sit up for more than a minute at a time right now without feeling really dizzy and faint, and having really bad pains in my back.

Anyway, it’s International M.E. Awareness Day today, which is part of M.E. Awareness week. Last night I recorded a video about it. How I am in the video is my normal “bad day”, if that makes any sense. It’s not the worst I’ve been, but I can be better.

Here is a blatantly stolen questionnaire (I got it from Pottering around with ME – Life According to Siz, but I have seen it on Facebook done by a few people as well.

Invisible Illness Questionnaire

1. The illness I live with is: ME/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome

2. I was diagnosed with it in: October 2010

3. But I have had symptoms since: September 2009 (or August 2009, if you include the Swine Flu I had first)

4. The biggest adjustment: Slowly going from someone who was fiercely independent, to having to accept help from Johan, and then from strangers.

5. Most people assume: That if I can do something once, I’ll be able to do it again or on another day. The illness is so variable that it’s hard for me to make plans, and I know that it can upset people when I say I can’t do something. Luckily, up to now most people have accepted I’m ill, which I know is difficult for other people with M.E.

6. The hardest part about mornings are: Actually waking up, and then staying awake for any length of time. I’m also often in a lot of pain first thing in the morning so I can’t judge if I’ll be able to get up that day. Having to get up when my carers arrive (if I can) is also difficult.

7. My Symptoms: Constant flu-like exhaustion, severe pain in my muscles and joints that are only partially helped by strong painkillers, constant headache and sore throat, muscle spasms- mostly in my hands and legs but also elsewhere, temporary paralysis in my legs and sometimes my arms (for a few hours), brain fog (short term memory problems, concentration issues, muddling words), muscle weakness that is so bad that I can’t walk or hold a pen, intolerance to light, noise and touch.

8. A gadget I couldn’t live without is: My computer, a laptop and HTC Desire. It means I can still do stuff when stuck in bed or my flat, and I can still attempt to study for my AS Level. Although not a gadget, my wheelchair is also brilliant as it means I can go out on good days.

9. The hardest part about nights are: Waking up multiple times from severe pain, and being too weak to be able to take any painkillers. Also needing the toilet, as I can’t get there.

10. Tablets a day:High dose (20,000 units) vitamin D for severe vitamin D deficiency three times a week, 50mg quetiapine and 50mg tramadol at night for my previous mental illness (which also help me sleep), 30-60mg nefopam up to three times a day for pain, 400mg ibuprofen up to three times a day for pain, 30mg lansoprazole every morning to protect my stomach from the ibuprofen.

11. Regarding alternative treatments: None so far. There are some I wouldn’t try, but I wouldn’t rule most out if I could access them and I thought they would help.

12. If I had to choose between an invisible illness or visible I would choose: Hard one 😛 I had an invisible disabilty anyway (autism/dyspraxia), so M.E. is actually slightly more visible, as I use a wheelchair. I’d go visible if I have to choose, as it is more obvious.

13. Regarding working and career: Not happening right now 😛 I attend college when I’m able to, doing an AS Level in Computing, which only works because I get a lot of support and understanding at college. I’m wanting to go to university to do Computing and Networking, and then become a network administrator, but it may be that I have to delay it. I also have a backup job option of being a computer programmer if I’m not well enough to do network administration, because I can do that from bed 😛

14. People would be surprised to know: Despite all the moaning and grumbling I do online, in real life I’m normally quite positive and happy 🙂 I also feel that being physically ill is a lot easier to deal with than being mentally ill (at least for me). The moaning and grumbling online is because I’m still not used to being this ill, and change is bad 😛

15. The hardest thing to accept about my new reality has been: That I need so much help with things that when Johan had to go into hospital, I had to go into a care home. Also, not being able to be intimate with Johan, as any touch is too painful.

16. Something I never thought I could do with my illness that I did was: Recover from depression 😛 It’s probably not due to being ill (though the enforced rest helped), but I would have thought that the illness would help keep me depressed.

17. The commercials about my illness: Don’t exist. Which is wrong.

18. Something I really miss doing since I was diagnosed is: Reading long books in one sitting. Going out whenever I fancied it, rather than only when I’m well enough. Being able to meet up with friends. Being able to manage a full week at college. Being able to stay awake for more than a few hours at a time.

19. It was really hard to have to give up: Being independent.

20. A new hobby I have taken up since my diagnosis is: Napping during the day 😛 Seriously, I’ve not really taken up any new hobbies, but I appreciate the one I have continued with (playing World of Warcraft) a lot more.

21. If I could have one day of feeling normal again: I’d probably just go to college, without my wheelchair, and spend time with my friends there and go to all my lessons 🙂 Also spend time with Johan afterwards 😛

22. My illness has taught me: That good friends will stick with you no matter what, and there are plenty of people who are willing to help, even in small ways such as opening doors and things. There are also people who don’t like moving from the wheelchair bay on the bus, which can be frustrating.

23. Want to know a secret: To manage college, I’ve basically given up everything else. I don’t even play World of Warcraft that often any more. Also, my main rule for whether I’m well enough to go into college is can I keep my eyes open and sit up? If so, I go in. This is probably not doing my health much good, but so long as I can get through my exam it’ll be worth it.

24. But I love it when people: Offer to help, with specific things. Open questions are very difficult for me to deal with, so things like “do you need anything?” or “anything I can do?” makes me panic. Also, when friends understand if I don’t reply to messages, or don’t make contact that often.

25. My favourite motto, scripture, quote that gets me through tough times is: It’ll be okay in the end.

26. When someone is diagnosed I’d like to tell them: To listen to their bodies, accept help if it’s offered, and rest. Also, there are no guarantees with this illness, so don’t worry too much if you get worse- there’s a good chance you’ll get better as well. It’s also very individual- what happens to someone else may not happen to you- which includes treatments and things.

27. Something that has surprised me about living with an illness is: Just how variable it can be, even through the day. Also that even little things can cause a big relapse, and that you just have to go with it.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visited me in the care home 🙂 It made me feel much better. Also friends who are understanding and try and make things easier for me.

29. The fact that you read this list makes me feel: Happy that you’ve maybe learnt a little bit about this illness 🙂 Also amazed you’ve managed to read this far 😛

30. Something I want people to take away from this: M.E. is a real, physical illness. It can vary a lot- one day someone with it may seem perfectly fine, but underneath they may be struggling, and if they do too much they could end up unable to get out of bed. It’s also variable, so some people my have it mildly, whereas others may be so severely ill they have to stay in a darkened room, be tubefed, and cannot tolerate any noise, light or touch.

Chlay’s single, Silently (and other stuff): http://chlay.blogspot.com/
http://www.amazon.co.uk/gp/product/B003ES1PWM/ref=dm_dp_trk5
(Also available on iTunes)

AYME (where I’ve met many wonderful people): http://ayme.org.uk

Action for M.E.: http://www.actionforme.org.uk/

ME Association: http://www.meassociation.org.uk/

Danni

An (overdue) Update

Autism, College, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life

A lot has happened since my last update in February. The big thing is that Johan’s depression became really bad, which resulted in him having to go into hospital for a bit on 27th March. You can read more about that on his blog here. This was mainly because we still had no help from social services, and even though they’d been warned he was getting that ill they didn’t do anything.

Because Johan went into hospital, social services had to start providing my care. The morning the nurses came out on the Monday (Colin stayed with me overnight on the Sunday, but had to leave for work at 6.30am) they realised I needed a lot more help than two visits daily would allow, as I need help with getting drinks, getting to the toilet, getting food and stuff, as well as things like washing and dressing. Because of this, it was decided I needed to go into a care home while Johan was in hospital. One was found that would take me, and then an ambulance came to take me there (social services suggested a taxi, until Louise (from college) told them I couldn’t walk and was in an upstairs flat, so would need help getting down the stairs). I managed to forget things as I normally do, but it was sorted in the end.

The care home itself was okay. It’s designed for people with physical and learning disabilities, and the other residents were nice. My room was okay, apart from being very brown (I don’t like brown that much) and the doors being too heavy for me to open. This meant that I couldn’t manage to take myself to the toilet after a while, as even though I could crawl there (until I got ill- more on that in a moment) I couldn’t open the door. There were other problems as well, that we’d not realised would happen. I can’t ask for things for myself and I can’t cope with open questions, such as “do you need anything?” (this is a communication problem caused by my autism). This caused problems. It became a big issue on the Friday when I couldn’t ask to get into pyjamas, so had to sleep in my day clothes, including my big hoodie (I can’t lift my arms above shoulder height, so need someone to help me with my top half of clothing).

By Saturday I was ill- I’d overdone it (crawling to the toilet, lifting my bottle of diet coke so I could have a drink, getting myself ready for college on Wednesday morning because the staff claimed I’d changed my mind about going, when I hadn’t, and things) and I couldn’t sit up unsupported or move much. I was in a lot of pain, and I became non-verbal, which is normal when I’m overloaded. The staff’s response was to keep asking me to talk to them. I couldn’t- I couldn’t remember how to speak, and my attempts to do so failed. They had been warned that this could happen, and it was on my care plan, but it must have been forgotten at the time. One of the care staff even touched my face (there was a big sign on the door telling them not to touch me without asking) which didn’t help, and caused me to panic.

Because of my inability to communicate, I went without a drink or going to the toilet for 19 hours. This was not good. I still have a mild UTI from this. When I finally was able to type on my phone, and get one of the care staff to look at it, I was able to tell them that I couldn’t speak, and that the pain was unbearable and I couldn’t take codeine (on the Monday I’d taken some and the abdominal spasms where horrendous even with the buscopan). They called the doctor out, and while I waited (it took him 6 hours to arrive) Johan came and saw me.

Johan was able to get me out of my hoodie (when I’m that ill, I alternate between sweating madly and feeling too hot, to being freezing, so wearing a big hoodie was not the best), get me a drink and somehow get me to the toilet. He was also able to tell the care staff that I needed more help than they were giving me. Louise also phoned the care home (we were in contact via email) and told them about how my autism affects me, and that they need to ask closed questions, such as “do you need a drink?” or “do you need the toilet?”. After she’d spoken to them, things improved a bit, but there were still times they only asked open questions and I couldn’t answer.

Luckily while Johan was there I slowly got the ability to speak back (being more comfortable and being able to talk with him using messenger helped) so when the doctor arrived a few hours later I was able to explain to him that the pain was unbearable and I was too scared to take codeine because of the abdominal spasms being nearly as bad. He gave me a prescription for nefopam, which I’d never heard of before. The care home promised I’d be able to get it in the morning (it was quite late at this point).

Sunday I was still in a lot of pain, and still unable to get out of bed except to go to the toilet, but at least I was now able to drink. My visit that day also cheered me up a bit, which helped. Unfortunately, the chemist the care home uses decided to not be open that day because of a wedding, and hadn’t told them so I wasn’t able to get any painkillers that day at all. I survived though.

On Monday I finally got my painkillers, and they helped a lot. This meant that by the evening I was feeling much better, was able to sit up, and finally got a bath so felt a lot more human (I’d meant to have one on the Friday, but it didn’t happen). Tuesday I was able to go back to college, but by this point the stress from the weekend, on top of the anxiety caused by not knowing if my needs were going to be met meant my mental health had started to get worse, and I started having my first thoughts about suicide in a year. By Friday’s meeting with my social worker and the home care staff (I had been reassessed during this time- the previous assessments weren’t good enough for the physical disabilities team) I was desperate to get home, so when they said that the home care would only be another 10 days, Johan agreed that it would be better for both of us for me to be home. I’ve been back a week and my mental health has gone back to being mostly stable, so I guess it was just the stress.

The good news is that the home carers start on Monday 😀 I’m getting 12 hours a week from them, some in the morning, some in the evening. They’ll help me with getting up in the mornings, getting ready for bed at night, baths three times a week, and also help with doing some basic housework on days I’m not having a bath. This should take a lot of the stress off Johan (who is doing a lot better), which should help a lot.

Okay, what else has happened? I have seen the M.E. specialist, who wants to make sure my tiredness and stuff is not caused by depression (erm, apart from the blip caused by the stress of being in the care home, I’ve not been depressed for a year) or being autistic (even with the explanation I was given about it being caused by overload, I’m not convinced it can cause such exhaustion that you can’t walk). Hopefully once that’s happened, and the M.E. is confirmed again, I should get some coping strategies and things to help. I know that M.E. can’t be cured, but I’ll accept any help at the moment I can, as my functioning is really poor.

I also got my exam result from my AS Computing. I got an A 😀 This is awesome. My predicted grade for the next exam is either an A or a B, depending on what sort of day I’m having. I’ve been enjoying the programming part of the course, even though Visual Basic.net is a bit weird in how it does things. I’m still slightly behind, as I’ve missed a lot of lessons because of being too ill to get in, but I’ll be able to catch up as it’s the Easter holidays now.

Interface has been good. I’m now running an Internet club for the other students, doing stuff like how to send emails, how to behave appropriately on different parts of the internet, how to keep yourself safe and things. I’m hoping it’ll go well.

Tomorrow I’m going to a friend’s wedding. Yay! This will be the first wedding I’ve ever been to as a guest, so it’s very exciting. I may blog about it afterwards 🙂

On my functioning- well, I can stand up for a few seconds on a good day (yay!) but there are so many things I can’t do or need help with. I can’t walk at all, I can’t lift anything heavy so need someone else to pour my drinks, I knock things over all the time (the M.E. has made my dyspraxia much worse). I need someone to brush my teeth, wash/brush my hair, help me with the top half of my clothing. I need my food cut up for me as I can’t do it myself, and often have to eat with my hands because holding a fork or spoon causes my hand to shake uncontrollably. I can self propel my wheelchair for a few seconds, but it’s normally just enough to get around the toilet or get through doors if needed, and if I try to do too much I end up stuck in bed. I can type, but writing is nearly impossible. This is all on good days- on bad days I can’t get out of bed, can’t sit unsupported, and sometimes need Johan to feed me or hold my cup to my mouth. I hate being so dependant on other people, but I’m starting to get used to it.

Okay, I think this blog post is long enough now, but I may do that 30 day song challenge thing I’ve seen on other blogs, starting tomorrow. No promises, though 😛