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 🙁 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 😛 Time to sleep now, and that’s good too.

 Posted by at 4:32 am
Jan 082012
 

I am writing this while lying in bed in the early hours of Sunday morning, while Johan is sitting at his computer on the other side of the living room playing World of Warcraft. We are both comfortable and happy.

I feel very lucky to have met Johan. We are very similar in a lot of ways, and this means we understand each other in a way that most other people don’t. We often think the same things, which results in us saying exactly the same thing at the same time. We have similar interests.

I met Johan in Second Life, introduced by a mutual friend, Alexa. Alexa and Johan were best friends in Second LIfe, and I was roleplaying as Alexa’s daughter. At the time of meeting, Alexa and Johan decided to try being boyfriend and girlfriend, which didn’t work out. They remained very good friends though.

A few years ago, there was a meeting in London of Plurkers and Second Lifers, which we both attended. We immediately got on as well in real life as in Second Life, and everyone there (except Johan) could see that there was something between us. We met up a few times in London, often with other Second Life friends, and eventually I asked him out (very clumsily) over lunch in the Science Museum. He said yes, and told me that he’d been too shy to ask me out. Most of our friends told us they knew it would happen 😛

After Johan had spent a year at university, he came to my flat for a short holiday, and never left. Once we’d decided he was staying long term, we went and declared everything to the benefits agencies as required, and he brought his computer and not much else up with him from where he was staying in Hull. This was partially because I wasn’t coping with living alone (Vicky had moved out at this point to be closer to her work) and we were worried I would have to move back into less independent acommodation, but also because we enjoyed being together and Johan felt at home here. I soon discovered that Johan’s self care skills weren’t exactly the greatest, but I was able to help him with them as he was able to help me with my mental health problems. People started asking us when we’d be getting married, and while out with my brother at the MetroCentre we mutually agreed that getting married would be a good thing to do.

It was rough while my mental health was bad, especially when I became severely depressed late 2009/early 2010. Johan helped me though, and eventually I came out of it. Having a stable home with someone I loved was one of the bigger factors in my recovery from depression. Also by this point I had M.E. but wasn’t aware of it (I was putting my symptoms down to depression) and Johan helped me with dealing with the gradual loss of ability as it got worse, including pushing me in a wheelchair for the first time while on holiday in Edinburgh.

We got married in August 2010, inviting only very close friends as we wanted to keep it small. We both don’t deal well with crowds of people, and the tiny wedding we had followed by playing Rock Band and eating pizza in our flat with friends was perfect for us. We also enjoyed our honeymoon in Durham.

One of the reasons I suspect Johan is on the autism spectrum is because he is so similar to me. He gets anxious about many of the same things, thinks in a similar, logical way, and doesn’t display emotions in a typical way. Because we are so similar, we’re very good at reading each other, so we can tell when the other person is happy, sad, anxious or frustrated, even when it isn’t obvious to other people. Unfortunately this also means that are emotions tend to feed into each other, so if one of us is upset (especially if it’s because we think we’ve upset the other) both of us will become very upset and often results in us both having meltdowns. Luckily though it blows over very quickly and everything is back to normal within a short time.

Being so similar also means we know how to comfort each other. Johan will mention penguins to me if I’m sad, as that normally makes me happy. I’ll offer him a hug if he’s sad, as that makes him feel better. We can deal with each other’s physical contact even though we don’t normally like it, because we love each other so much and know how to do it without it hurting (or for me, hurting too much).

We also both like being silly. We can be serious when we need to be, but if we don’t need to be then silliness is the norm for us. When I mentioned to Johan I was writing this blog post, saying it was about how I love him and he loves me, he followed it up with “we’re best friends as friends can be”- a rhyme from Barney, of all things 😛 We feel so comfortable with each other that stuff like that is how we like to interact, and normally results in smiling and giggling.

Johan has also been exceptionally understanding about my health problems, first my depression and then my M.E. Sometimes he can be a bit overprotective, but it’s because he doesn’t want to see me any more ill. He’s done way more for me than should be expected from anyone, and he does it because he wants to, not because he has to. In return, I try and help him with his mental health problems, and help him with prompting and things for his self care needs. We both find it a lot easier to do things for the other rather than for ourselves.

I love Johan. He loves me. We’re very happy together, and very compatible. We both want to spend the rest of our lives together. I’m grateful to Alexa for introducing us, and one day we’ll go over to where she lives to meet her in person. I’m sure there’s lots of other things I could mention, but I just wanted to write this about the most amazing man I’ve ever met.

To Johan. Thank you.

 Posted by at 3:11 am
Sep 172010
 

I could see it as you turned to stone
Still clearly I can hear you say
don’t, please don’t , give up on me
two weeks and you ran away
I remember don’t lie to me
you couldn’t see that it was not that way
swear I never gave up on you

It’s been two weeks since I started college. It’s going well. I’ve finally got what looks like my full timetable, and if Interface agree, I’ll be in college all day Monday, Tuesday and Wednesday, and for 90 minutes on a Thursday. Included in the timetable are places to do my homework that I get from my Computing course, so I shouldn’t fall behind on them.

Computing has been good so far. We’re doing binary and logic gates (binary I’d done before, logic gates aren’t difficult), and so far the only trouble I’ve had is copying things down from the board correctly, and missing something from the question. I’m expecting it to get a bit harder as the year goes on, but I’m confident I’ll do okay.

Interface has been fun, but hectic. There are a lot of new students this year, and since I never got to know most of the students from last year I’ve got a lot of new people to get to know. I’ve put myself up for class representative this year, which should be interesting. It has been induction the last two weeks, and so I’ll know better from next week what the lessons are going to be like. I’m not expecting any huge surprises. The first week I only went in Monday, Wednesday and Thursday, but I found that the day off on a Tuesday made it harder to get up on a Wednesday, so I’m going to go in that day as well. Luckily the new timetable shows that there are interesting lessons on a Tuesday, so should be okay.

I’m still extremely tired, and so I’m using the wheelchair to get to and around college. It’s working well, as it means I can focus my energy on my lessons rather than on getting myself around. I’d much rather have the energy to walk, but there’s no point getting upset about something that at the moment I cannot change. On the good side, I’m still pretty happy, which is making everything much easier to cope with, even being in constant pain. I still have my off moments, but they’re bearable now.

Last Sunday I went to the Latin Mass in Gateshead with Vicky. It was interesting, though I couldn’t hear most of it so lost track of what was being said. Then we went to the MetroCentre to look for a swimsuit for Vicky, then for a meal at Wetherspoons. It was nice 🙂

On Wednesday I went bowling with Interface, and it was a lot of fun (plus a few people got a bit of exercise pushing me up the hill :P). After college, Johan and I went to the MetroCentre so I could get a new watch (mine had broken), and we met with Dean (he was at Interface until last year) and went with him. It was great meeting up with Dean, and I finally found a watch (though it is not what I wanted, it tells the time so it’ll do until I can find one that does what I want it to). We went to McDonalds and I had a Mint Chocolate Aero McFlurry, which was yummy 🙂

I’ve been on a diet since Tuesday, aiming to lose some of the weight that I’ve put on since going back on medication. It’s a very simple diet, just changing some of the stuff I eat to more healthy things and trying to keep the calorie intake down. I started monitoring my weight and food 10 days ago, and since then I’ve lost 3lbs. This is good for an initial start, as healthy weight loss is 1-2lbs a week. I’ve noticed that simply keeping track of what I’m eating has meant I’ve been eating less, and we’ve switched from white rice, pasta and bread to wholemeal so it’s meant I’ve been getting less hungry. I’m still eating everything I like (doughnuts, biscuits, chocolate, bananas, chicken), but in slightly smaller portions which is helping. I’m trying not to be overly fussy about it, just letting my weight guide a little how much I eat.

I’ve not been on my computer much the last couple of weeks, barely been in Second Life or World of Warcraft, or on social networking sites. This weekend I’m going to try and catch up a bit, as well as maybe going to Software Freedom Day tomorrow. Also, I have TV shows to catch up with before they all start up again next week.

It’s going to be busy, but I’m enjoying it.

 Posted by at 3:27 pm
Sep 032010
 

I was going to write long posts about some of the below, but they’re not getting done so I’ll do a quick post with everything in.

I got married on 13th August to Johan. It was quiet and nice.

We went on our honeymoon to Durham for a couple of nights. It was quiet and nice.

I got enrolled at South Tyneside College to do AS Computing and Interface stuff. This was not quiet and nice (the enrolling process), as it involved arguments over funding, worrying about not being let onto the course, and similar. Luckily, my key worker Louise can work miracles, and it’s pretty much all sorted now. She argued to get me onto the course, to get the funding, she enrolled me so I didn’t have to travel to college for that, she’s sorting out my support, and she made me laugh lots while sorting things out today. Louise, thank you.

I start college on Monday. I’m in three times a week, probably Monday, Wednesday and Thursday. The days suit me, especially since Wednesday is morning and Thursday is afternoon/evening (4.45pm-6.15pm). It means I can do Enrichment with Interface, which is bowling on Wednesday 😀

I’m genuinely happy, and have been for several months. It’s been over a decade since I was last as happy as this for as long 😀 I’m still crazy anxious though, and some days I can’t walk I’m that exhausted, but I’m adapting. Johan’s going to get muscles from pushing me 😛

I’m playing in Second Life again. Danni Ohara is at school at Oceanside Elementary. It’s fun. She’s also on trial with an adoptive family, who are brilliant and I like a lot 🙂

I’m not really playing WoW much at the moment, but will be doing so again soon, once I’m settled at college. I’m still looking forward to Cataclysm, and have decided to buy an online Blizzcon ticket 🙂

I play a lot of Audiosurf. It fits with my lack of concentration at the moment 🙂 I also play a lot of Facebook games 😛

 Posted by at 8:19 pm