Whee!

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Danni in New Wheelchair

I won that wheelchair last week for Β£95 including postage. It arrived Monday morning. It is a tilt in space and reclining self propel wheelchair, and it is much better for me than the old one. I am too tall for it really, but we use a pillow on the headrest and I don’t mind my legs sticking out a bit so it is fine. Went to the local shop and other than really needing a hat as the sun was so bright even with sunglasses (as I was tilted back a bit it was more in my eyes than it otherwise would have been) it went really well. I won’t be able to have it fully reclined when travelling on public transport as it makes it really long, but I can have it tilted and a little bit reclined on there which will help a lot. As I’m tilted I also don’t need the harness to hold me up with it πŸ™‚

New care agency is still working really well. My main carer (Johan is calling her Lovely Carer) is absolutely brilliant. She does have a tendency to stay over time, but it feels almost like having a friend over than a carer (though she does help me with my personal care and any tasks we need her to do). She was off on Friday as she had a funeral to go to and it was her weekend off, so we got three other carers then (that is apparently too many and is unusual- I still think 4 in one week is much better than 15…). All three of them were really nice and lovely and talked to me like a human being, rather than being patronising. I did miss a couple of times as my sleeping pattern threw itself out (one night of insomnia where I didn’t get to sleep until 7am) but the carer then (the manager) was just worried that it was because it was someone I didn’t know. When I did meet her in the evening she was really nice and we were able to tell her how happy we are with things πŸ™‚

Sunday night we did both have a bit of a meltdown due to another new carer coming when Johan was meant to be raiding. Was silly in the end as the raid didn’t happen and the carer was lovely, it was just I didn’t want to have to deal with a completely new person by myself. That was one of the problems with the old agency- there were constantly new carers that I didn’t know so neither of us were comfortable with it. As the new agency thinks 4 carers in a week is too many I know things are going to be better. This week we’re only seeing Lovely Carer as she comes both morning and evening and is working this week. She seemed rather excited about that (she seems to like coming here as much as we like her coming πŸ™‚ ).

Meggy and Martin (my youngest siblings) came to visit last Tuesday, and also cleaned most of the kitchen and living room for us, which was very nice of them. Meggy has said she wants to come back this week to finish it off. This is not a problem with us. She’s very good at it πŸ™‚ Johan was terrified to begin with as he felt really guilty but he was okay after she got here and when she actually did it.

To also help, we finally have the council cleaners almost sorted! We’ll be having a cleaner in 2 hours a week to do the main cleaning jobs, and they should be starting next week some time. We’re just waiting for them to tell us when it’ll be. This is a paid service, but at Β£10.41 an hour it will be well worth it for Johan to stop worrying and for me to be able to have the place clean how I want it. I can pretend it’s because we’re really posh and stuff (my DLA covers it as it’s because of my disability I can’t do it myself). Lovely carer can also do smaller jobs inbetween (washing a few dishes, putting a load of washing in) so between the two services it will work well.

Last week I also sent an email in the middle of the night about the neighbours upstairs while they were making a massive amount of noise fighting. Johan was terrified lying on my bed next to me, but I got angry instead for once, so sent the email. The local estate officer is coming out on Wednesday to discuss this. We’re not exactly wanting to complain, we just want to do what’s necessary to make it stop (though that might require a complaint). We have a simple way of judging if it’s just oversensitivity or actual loud noise- if I can still hear it with my ear defenders on, it’s very loud (and the stuff we can’t tolerate is arguments, stomping, throwing things and slamming doors, rather than normal chatting, television watching or listening to music, though we don’t like the drilling at midnight either).

I’m still doing pretty well. Been on my computer (in new chair!) and though I didn’t play World of Warcraft I did get a message sent in the Ayme forums, which took about 2 hours for me to write because it is very hard work for me. I don’t know why because writing to people on forums used to be easy. I also went on Facebook for a bit.

On Thursday I hope to go into Grainger Market in Newcastle to get some nice food. There is a lovely bakery in there called French Oven and the bread and macarons are gorgeous. They are doing special flavours for the Jubilee so I have ordered two of each flavour for us of the macarons (16 in total) and two high tea boxes. As I have my new chair I am hoping to go there myself but if not Johan will go for me. I am looking forward to it πŸ™‚

I have been enjoying the nice weather but my body has been responding oddly to it. For a while I needed lots of anti nausea tablets which is not like me and my body couldn’t decide whether it was hot or cold or both, but I have finally adapted. I think it was the change in weather. I have been watching the birds outside my window with it open, and it has been lovely. Luckily my window is shaded by lots of trees so it doesn’t get too hot in my room.

I hope things keep going well. I am liking my new chair giving me more freedom to go out πŸ™‚

Escaped!

Today I escaped both my bed and the flat and went outside πŸ˜€ It seems that now I’m finally over the cold that was causing me to relapse, I’m not too far off where I was in April before it. Still resting lots and taking it pretty easy, but this is good πŸ™‚

Last night Johan washed my hair, and then I got dressed for my doctors appointment this morning (it may sound a bit odd, but it was a t-shirt and leggings and it’s because I need at least a few hours to rest after getting dressed). I’d slept a few hours yesterday evening (about 5pm-10pm, after waking up at 1pm) and so didn’t get to sleep until about 4.30am, then woke from a nightmare at 5.36am (I looked at my watch) :(. Managed to get back to sleep and was in a weird but not as scary dream when I woke up with the alarm at 7am. (The dream had something to do with having the wrong router and it was showing up on the telly where an episode of the Simpsons was playing- weird but not massively scary :P).

I gave Johan cuddles to convince him to get out of bed, then we got ready and left and actually arrived early! Johan’s appointment was 8.30am and mine was 8.40am, as when Johan made them he didn’t think I’d be well enough to go (I was being stubborn though :P). Saw the doctor who was the nice one Johan saw the first time, who apparently is rarely there. She is brilliant- wanted lots of details to help Johan (he’s being referred back to the psychiatrist to help stop him getting so depressed again, as she doesn’t feel primary care has enough knowledge on how to deal with his particular type of depression), then I said hello (she asked if it was that type of appointment when I told her I’d not been well enough to go to the last appointment either), asked for some more tramadol as I’d been taking loads during the relapse, and for some lactulose to help prevent me getting as badly constipated again, which she was happy to do. We also discussed my M.E. care (she’s impressed that I get home visits- as am I) and how my consultant had been asking GPs for the numbers of M.E. patients a few years ago as he was wanting extra funding.

She also mentioned that she feels that GPs react badly to M.E and other illnesses that they can’t cure especially when there’s no-one more specialist they can refer to, but since they have my consultant in this area they feel better able to deal with it. She also said that’s probably why some doctors deny it exists, because they’d rather it didn’t exist than accept there was nothing they could do for it (even referring on to a consultant). That actually makes some sense, so I’m very grateful that I live in this area. I explained what the CFS clinic actually do and where they’re based (information she didn’t have) and then we talked a little bit about my oversensitivity to medication (Johan mentioned it first for the lactulose as I didn’t know dosages as only had it in hospital before, then I explained there’d been some research into it regarding autistic people and things which she was interested in).

I can see why Johan came home not anxious last time- she’s very friendly and professional at the same time, is confident in what she knows and also in what she doesn’t know, and wants to do the best she can for us. She’s also put in a referral for Johan to get a social worker to help him with his autism related issues, as mine can’t do much for that.

Afterwards we went to the chemist to pick up my prescription, then went into Gateshead as it was nearby, we needed some toothpaste (and a drink to take a painkiller with as we’d forgotten to give me one before I went out- whoops) and I wanted to go into a shop! Went into Wilkinsons, I looked at makeup for the prom (and decided I best go back with my sister Meggy who is doing my hair and makeup to pick what I need, as mine has gone walkabouts), picked up the toothpaste, facecloths (we needed a couple more) and a drink, then went to the checkout where Johan’s card was declined and he’d forgotten mine (and only had about 40p in cash on him :P). We figured out why it had been declined, said we’d come back and went to the bank.

It turns out the bank hadn’t changed his address properly and the new card for his new account (he upgraded his to a proper adult one :P) had been sent to the old address. Not sure it wasn’t picked up last time he mentioned he hadn’t received the card (he’s asked twice) but the man there found the problem, fixed it, ordered another new card to be delivered to the place we now actually live and gave him some money (out of his account). We then went back to the shop to pay for our stuff, I took a painkiller (I was really feeling it by that point as it had been about 1am when I’d last had one and it was now 9.30am) and we got the bus home.

The carer was due at 10am, but we got home at 9.55am. The woman with the paperwork arrived just after 10am, and started on that while waiting for the carer. Everything was fine and we realised that things were different almost straight away. I’m going to have one main carer, and then they’re going to get a couple of others to meet me and to be available for those times the main carer isn’t working. That means only 3 people to get to know! There may be emergencies when they’ll need to bring in someone new but they try to avoid that and stick to those three. Then the carer who is going to be my main one arrived, and we got on straight away πŸ˜€ She was late because she’d just walked about a mile, which is fair enough (we’re fine with lateness, it’s earlyness that I can’t cope well with).

New carer is American, very eccentric, and has a very similar sense of humour to both me and Johan. The woman doing the paperwork (who is also a carer) was very lovely as well, but she was a little bit left out as the three of us started talking about all sorts of things. We did all chat about how the agency works a bit, as we explained what happened with the old agency (they were horrified, and the paperwork carer was wondering how they managed to run anything that way) and they were able to reassure us that they weren’t like that. They’d already been told a bit about me by my social worker (including the main carer!) and we were able to clarify things. We let them know we’re very flexible on times so long as we know in advance, and main carer said she may need to move the morning call a little earlier because she sees someone else just afterwards and wants to get there on time. Okay with us πŸ™‚

My social worker did get the timings a bit wrong (morning calls were meant to be 45 minutes, but are now an hour, and evening calls are meant to be 30 minutes or 1 hour depending on if it’s a “bath” night (we no longer have a bath. Boo!) or not but is now 30 or 45 minutes, but we’ll work with that now and we can change them if it’s not working right.

When the paperwork carer was finished, the main carer wanted to get started. As I was already dressed and stuff, there wasn’t much for her to do except brush my teeth (as Johan is too scared to do it and I’m not able to, it had been a while) so she did that then we chatted a bit longer. In the end we had to remind her several times that she had another client to go to for 12pm (only around the corner, but she kept chatting longer). She understands that I might not always be up for talking and that’s okay with her. She did listen to what we say and wants to work with us, and says she looks forward to being here. She comes back tonight between 7.30pm and 8pm, and I’m actually looking forward to it πŸ˜€

It has been a very good day. The carer situation seems a lot better than than the last one, and they understand our requirements and are quite happy with them. The doctors went really well and according to Johan the other doctors he has seen there are really nice as well. We’re on the way to getting Johan the help he needs and I feel like they will help me if I need it. I got to go shopping and go on a bus and though I’m in bed now I’m very very happy. We’ve also bidded on a tiltable wheelchair on eBay which ends tonight and if I win that going out should be even easier (my friend Elmo found it for me- he’s awesome).

*Penguin Flaps*

Milkybar and Vimto

I wasn’t feeling well so Johan went to the shop to go get me some Milkybar and a bottle of Vimto squash. I am such a big kid but it did help πŸ™‚

This week has not been brilliant. Seems all the blogging and stuff last week was just a bit too much, so needed to be in a darkened room and couldn’t sit up until today. On Thursday the CFS Clinic peoples came to see me, which we weren’t expecting as we’d forgotten to put the appointment in the calendar. They were nice though- understood that this relapse is one of those things (it’s still the one from the end of April) and just want me to do what I can when I can, and rest lots. They also said I could use heat as much as I like for pain, so long as it’s not so hot it burns me πŸ˜› They’d been contacted by my GP but they don’t deal with medication themselves, so have recommended that he contact the pain clinic. That is all very good. They were not here for very long as talking and processing verbal stuff is the most tiring thing I can do, but they’ll be back in about 6-8 weeks to see how I’m getting on. I likes them πŸ™‚

The big thing for me is that I’ve been invited to the Interface Prom again this year (the old students are normally invited). I really really want to go. It’s in about a month, so it may be possible if I improve enough. The venue is the same as last year which is good, and as the staff and students already know me and my M.E they won’t mind if I need to lie down or stuff (there are some sofas just outside the room the actual prom is in- ideal for lying on :P). I may be being a little optimistic since I’m currently still bedbound, but if I can get back to where I was in April (which is doable) then I’ll be able to go. We’ll have to plan it really well and I might not be able to stay very long, but it would be worth any payback/relapse I’d get as I’d get to see my friends πŸ™‚ We’ll see.

Today I’m doing the best I’ve been for a little bit- I can cope with light normally again, I’m sitting propped up in bed, and I just feel much more with it. I actually feel well enough to go into the living room but I don’t want to push it yet- if I’m still the same tomorrow I’ll go through then. I’m just aware that yesterday I still couldn’t cope with light and couldn’t cope with more than one pillow until the end of the day, so don’t want to overdo it.

Diablo 3 is out and Johan is playing a lot of it. He has a level 55 Monk (level cap is 60) and has completed Normal and Nightmare difficulties. He’s currently on Act 2 (of 4) of Hell difficulty (second highest- the hardest level is Inferno) and is doing pretty well. I want to play it (I got it free with the World of Warcraft Annual Pass) so I’m hoping I’ll be able to go on my computer soon.

I managed to call T-Mobile on Wednesday (I think) to sort out my contact. I was going to move my number to Three (who I got my iPhone with) and they gave me the PAC I needed to transfer it, but immediately after they phoned me back and begged me to stay for Β£5 a month. I agreed as I was originally going to put it on a Β£10 a month contract anyway and the 300 anytime minutes inculding 08 numbers is very useful, as they’re currently not covered by my iPhone and I have to pay using the landline for 0845 and similar. I don’t need internet on it as my iPhone contract includes tethering, but having a spare phone is useful and means I have access to all the Android Market (I refuse to call it Google Play- silly name) as well as the App Store. The contract is for 12 months so is only Β£60 in total, which is less than 2 months worth previously, so I’m happy.

Twitter has been amazing as normal, keeping me sane while I’ve been stuck in the dark mostly by myself. I’m still completely overwhelmed by Facebook, so still only using it very occasionally. Johan’s been coming in and talking to me when I’ve been up to it, and disappearing again when he can see it’s making me (more) tired, as well as looking after me generally.

The carers are starting on Monday. Not spoken to them yet (I’m hoping to do that at some point) but it’s a different agency and they offer a bigger range of help than the last agency, so we’re hoping it’ll go well. If they’re really good we may ask for some extra hours paid privately for some extra help for Johan. First visit is at 10am, then it’ll be late evening (not sure what time- we do have a care plan but I’ve not been able to look at it yet). I’m hoping them washing me, helping me with teeth brushing, hair brushing and when I’m up to it getting dressed will help Johan out a lot. When the shower’s fixed I’ll be able to have one up to three times a week if I’m able to (1 hour calls) which will be awesome.

I think things are looking up πŸ™‚

M.E. Awareness Day – 12th May 2012

Today is International M.E. Awareness Day, the biggest day during M.E. Awareness Week. I was hoping to write something really good and informative today, but my plans have been scuppered because I’m too ill. Yesterday Johan washed me and helped me into clean pyjamas, and afterwards I crashed and I still haven’t recovered (yes, I am very ill because I had a wash- M.E is like that).

Anyway, what I thought I’d do instead is have lots of links to blog posts and things that are useful and informative. This also has the advantage of me being able to ask Johan to actually do the linking part as I’m not feeling very well at all. (He has agreed to help with this). I wish I could do more, but it’s just sod’s law that my M.E. means I can’t πŸ˜›

My blog posts from this week:

What Is M.E?:Β http://dannilion.com/2012/05/what-is-m-e/

How M.E. Affects Me: Β http://dannilion.com/2012/05/how-m-e-affects-me-2/

How I Cope With M.E:Β http://dannilion.com/2012/05/how-i-cope-with-m-e/

My Future Plans:Β http://dannilion.com/2012/05/plans-for-the-future/

Other useful M.E. resources and links:

An excellent awareness video by my friend Poppy, who is 13:Β http://www.youtube.com/watch?v=A5tX_RbFjvo

An article in the Daily Mail about how the author changed her mind about M.E:Β http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html

Emily Collingridge’s appeal:Β http://www.meassociation.org.uk/?p=10880

Severe ME – A Guide To Living- a book by Emily Collingridge:Β http://www.severeme.info/

Voices in the Shadows- a film about severe M.E:Β http://voicesfromtheshadowsfilm.co.uk/

Severe M.E. and Me- My Story by J K Rowbory:Β http://www.jkrowbory.co.uk/severe-me-and-me-%E2%80%93-my-story/

Fear-free Healthcare by Matthew Smith: http://www.blogistan.co.uk/blog/mt.php/2012/04/15/fear-free-healthcare

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

AYME:Β http://www.ayme.org.uk/

Action for ME:Β http://www.actionforme.org.uk/

25% ME Group:Β http://www.25megroup.org/

I may be adding other links if I find them.

Plans for the Future

As it is M.E. Awareness Week I am blogging about living with M.E. On Monday I wrote about what M.E. is, on Tuesday I explained how it affects me, and yesterday I wrote about how I cope. Today I’m writing about my future plans.

Today I am having a pretty bad day, and feel a lot more brain foggy than is normal for me. It may have something to do with staying awake for well more than 24 hours before falling asleep around 8pm yesterday (I woke up at 10am). Writing long blog posts may also have something to do with it πŸ˜› Luckily, today’s blog post is easier.

My life is pretty much on hold at the moment. I had to give up college as I was just too ill to get in or do the work any longer, and I’ve even had to give up watching some of my favourite television shows as even when I’m well enough to have them on I’m no longer able to follow the plots or understand them. I am hopeful though that I will improve (and eventually get better completely), and so I keep a list of my plans for the future. Some of these are small, some are bigger, but this is a bit like my bucket list so there’s no known time limit to achieve them. They’re not in any particular order.

    • Go to the library
    • Go to Blizzcon
    • Visit Interface
    • Go on a plane
    • Make a proper risotto
    • Bake a cake
    • Stand up without feeling faint/actually fainting
    • Play Diablo 3
    • Play Starcraft 2
    • Play Pandas! (Mists of Pandaria, the next World of Warcraft expansion)
    • Create an Android app
    • Go see Wicked
    • Have a dancing lesson
    • Go outside, all by myself
    • Go to Scandinavia
    • See penguins in the wild
    • See penguins in the zoo (since that will be a bit easier)
    • Feed the penguins
    • Get another sparkly purple penguin (mine went missing and I’ve yet to find a new one)
    • Go upstairs by walking
    • Go swimming
    • Go ice skating
    • Learn to put mascara on without poking myself in the eye
    • Design, make and wear my own dress
    • Go to Blizzard Headquarters
    • Finish the Undead storyline (In World of Warcraft- I actually have a seperate list with more WoW goals, but I won’t post that here)
    • Read The ShatteringΒ  (a World of Warcraft book)
    • Read ALL the Warcraft books (even Knaak. Eek!)
    • Spend an entire day out of bed, without payback
    • Watch all Star Trek: Voyager again
    • Watch all of Star Trek: Deep Space Nine again
    • Actually, just watch all of Star Trek again πŸ˜›
    • Start using Linux again as my main operating system (as I only using my computer for games at the moment, it’s currently on Windows)
    • Learn to drive (if it’s safe)
    • Go on a train (Metro doesn’t count)
    • Ride a horse
    • See the Olympic Torch at the Sage
    • Have our marriage blessed in church (this was originally planned to be around our 1st anniversary, but I was too ill)
    • Go to church again
    • Go back to the Linux User Group
    • Go to university
    • Get a job I love
    • Clean the flat by myself
    • Get a manicure
    • Go to Palestine
    • Catch up with my television shows
    • Go to a convention
    • Wear a costume, possibly to a convention
    • Watch Star Wars to see if I like it this time
    • Meet up with friends
    • Be able to rock, flap and bounce again

    This is quite a long list, though it could be longer and I plan to keep updating it. I’ve missed some off- I desperately want to get well, but that’s not something I can just “do” (some of these goals are related to getting better, but I can actually say yes, I’ve done that, such as standing up without feeling faint or walking upstairs). Some of them I may never do, some of them I might be able to do pretty soon if my health improves a little bit. I may have forgotten some things (I hadn’t updated the list document for a while and though I tried to remember the others, my memory is very poor), and there are a few I’ve deliberately not mentioned for my own reasons. I’ve also been able to remove one of items as I’ve already achieved it. That made me happy πŸ™‚

    I want to particularly mention the last one on the list. One of the hardest things for me is that I’m no longer physically capable of or have the energy to do my usual stims (the repetitive movements/behaviours that a lot of autistic people (and a lot of non-autistic people as well) have). These have many purposes for me- they help me calm myself, help me understand and process things, but above all, they make me happy. I don’t normally do them in public unless I’m very comfortable or very anxious, but before I got very ill I used to be constantly in motion. People might not understand stimming, but I miss it.

    Having M.E. can mean your goals change. I never would have thought I’d be excited by the idea of being able to walk upstairs, but that’s one of my goals now. I also had hoped to complete my A Level in Computing, but that is no longer possible. I celebrate every achievement- and that can include little things like eating solid food or sitting up for a few minutes. I’m grateful for what I’m still able to do, as there are people (including some friends) who are too ill to do even the little I can. I pray for more research into M.E. and for a cure to be found, but in the meantime I’ll just keep dreaming.