Category: M.E.

Danni

Outside!

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

When I woke up today (around midnight as my sleeping pattern is still messed up due to being awake 16 hours then sleeping for 12) and after the normal morning blehness had worn off, I felt about as well as I had the last couple of days. As there was no power cut to deal with, I decided to try and get into my wheelchair. With some help from Johan (lifting me from the bed into the chair) I managed it and didn’t feel too bad. Since the living room is currently inaccessible to me (the double bed I was using before I got the hospital one is in there, along with other stuff) I decided that I wanted to go outside. Johan took me out and I spent about 5 minutes looking at the trees, the stars and down the hill towards the main road. It was amazing!

When I got back into bed I needed to rest for a bit, but I wasn’t too bad afterwards. A bit shaky, dizzy and nauseous, but nowhere near as bad as the last few attempts (when I tried and failed to go to hospital for an appointment). I have discovered that I find the footplates too hard now while only wearing socks (I used to be fine with bare feet) and getting in and out is still the worst part, but once I had the cushions in place to hold my head up and was settled I felt okay.

I’ll have to see how I am over the next few days to see if it’s been too much or not (problem with post exertional malaise- you don’t know how ill you’re going to be immediately) but if I continue to be okay I’ve got plans. Next up is getting into the living room (will need to make space for that), then it’s going out somewhere. Current thoughts are the local shop (about 3 minutes away, pretty accessible), library (5-10 minutes walk away, has a Changing Places toilet, is quiet) or into central Gateshead (5 minutes away by bus, Changing Places toilet in the Civic Centre, has changed massively since I was last there). I’m mentioning the Changing Places toilet as now I use pads and have a wheelchair of massiveness normal disabled toilets are no longer accessible to me, but the Changing Places toilets have plenty of room, an adult sized changing bench (often adjustable, including the two I mentioned) and a hoist (which we can’t use yet as Johan doesn’t know how and I don’t have a sling, but will be useful when that’s sorted). Not being able to use the hoist will make it a bit awkward, but between the two of us and adjusting the bench so it’s slightly lower than the chair should make it easier. It’s a ton better than trying to lie me on the floor of a normal disabled toilet and then trying to get me up again 😛 This is a link to the Changing Places website.

So I’m excited. I’m really glad that I’ve so far had three days of being much better, and can even think about planning stuff. There’s still a chance I’ve overdone it and will drop back down, in which case I’ll take it as lesson learnt and just remember being able to do things until the next time (I’m scared it’s going to happen, because it has before). It’s incredibly tempting to keep doing stuff while I’m feeling so good in comparison to my recent normal, yet I know I need to take it slowly and I’ve got plenty of time to sort things. Still, rest and chocolate seems to be helping so I’ll keep on going and praying and hopefully I’ll get there 😀

Danni

Improvement!

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

For some unknown reason, I’ve started improving. Not just the small improvements I normally get when coming out of a relapse though- I feel much stronger, and have so far sat on the edge of the bed unsupported for 30 seconds (Johan stayed there to be sure I didn’t fall) and sat on my bed for much longer. Then I cuddled Johan for half an hour because I’d not been well enough for hugs for weeks and I really wanted them.

Last night (unfortunately I’m nocturnal at the moment but my sleeping pattern will fix itself when it wants to) I found that after the normal blehness that comes from waking up had worn off, I was feeling just as strong as I did the day before. I was playing some World of Warcraft and planned to try getting into my wheelchair, when the power went off. Unfortunately there was a fault with an underground power line and it took over 4 hours, cutting the cable and adding fuses (according to Terry at Northern Powergrid, who was keeping me informed via Twitter) to get it back up. When the estimate changed from 1am to 4am (at 1.30am) Johan went under my bed and lowered the head of it manually, as although I was doing okay with having the head of the bed up we didn’t want to risk me becoming more ill. Without the bed working or lights (we had a couple of torches though Johan had misplaced some of them) getting into the wheelchair wasn’t feasible so has been postponed until I next feel well enough. If I’m lucky that’ll be after I’ve woken up again 😀

I honestly cannot explain why I’m doing the best I have in about 2 years. Going from incredibly weak (unable to even roll over or raise my head off the pillow weak) to being able to support myself for a bit in less than 2 weeks is amazing. I’m incredibly grateful for it, and I’m hopeful it’ll continue and I might even get better completely. If not though, I’ll remember these days as good days anyway. I think resting plenty might have had something to do with it, and there’s prayer as well which I know can work sometimes, though not always as expected.

I’m not completely better. My digestive system still hates me, I’m still getting a lot of nausea, pain is still a big problem. I still have a some muscle spasms, though they’re mild at the moment. But I’m doing so much better than I was even at Christmas that it feels amazing, and I really want this to be a long term thing. I’m praying 🙂

Danni

2013 In Review

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

My now annual review quiz of the year 🙂

1. What did you do in 2013 that you’d never done before?
Get an adjustable bed. It’s made a massive difference to my quality of life.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I kept three of four well. I’m going to keep working on the fourth this year. I’ve made some more for 2014 (in the previous blog post).

3. Did anyone close to you give birth?
Nope.

4. Did anyone close to you die?
No.

5. What countries did you visit?
Antarctica via the telly (yes, it’s a continent). Really though, I didn’t go further than about a mile away from home (the local hospital- the care home I stay in is even closer).

6. What would you like to have in 2014 that you lacked in 2013?
A hoist and a shower chair so I can get out of bed and get clean 😛 Better health would be nice as well (and if it’s loads better I wouldn’t need the hoist).

7. What dates from 2013 will remain etched upon your memory, and why?
I can’t remember the date due to brain fog, but I think  Sammie’s visit will be remembered for a long time 🙂

8. What was your biggest achievement of the year?
Seeing Sammie. Also probably visiting Johan in hospital 🙂

9. What was your biggest failure?
My health.

10. Did you suffer illness or injury?
Overall I had the worst year so far health-wise, and was bed-bound almost the entire time. I had a kidney infection as well that is still causing me problems months later.

11. What was the best thing someone bought you?
I don’t think this question is ever going to be easy. Johan got me a Blu-ray player and Spy in the Huddle to watch on it. Someone got me the softest penguin poncho. Sammie got me Oggy, a toy dog with a heart on saying “Love you… with all my heart!” which was incredibly thoughtful. A friend gave me loads of Christmas presents including a penguin adoption, penguin pyjama bottoms and the cutest little purple penguin. Seriously, I’ve been incredibly spoilt and I know I’ve missed some awesome presents here.

12. Whose behaviour merited celebration?
Johan’s again. My friends who have been there for me.

13. Whose behaviour made you appalled and/or depressed?
Tories. Lib Dems. People who spout hatred. Atos. Whoever decided that benefit delays were not a problem (I’m lucky that mine are sorted, but Johan’s PIP claim is still waiting for ATOS to contact him).

14. Where did most of your money go?
Food, bills, disability stuff and care home fees.

15. What did you get really, really, really excited about?
Sammie 🙂 Talking to Sammie was amazing. Seeing Sammie was amazing. She is an amazing person.

16. What songs will always remind of 2013?
What does the fox say? And Saturday by Rebecca Black 😛

17. Compared to this time last year, are you:
a) happier or sadder?
Happier 🙂
b) fatter or skinnier?
About the same, as unfortunately I lost some of the weight I regained over the year. I’ll get it back though 🙂
c) richer or poorer?
Richer, as although my income hasn’t increased my outgoings have dropped a bit.

18. What do you wish you’d done more of?
Keeping in touch with people. Getting out of bed.

19. What do you wish you’d done less of?
Relapsing.

20. How do you plan to spend Christmas?
I spent most of Christmas sleeping, as I was in the middle of a relapse. I’ve got my Christmas dinner to look forward to and I got some lovely presents though 🙂

21. Did you fall in love in 2013?
I fell more in love with Johan, if that counts? 🙂

22. How many one night stands?
None.

23. What was your favourite TV programme?
Doctor Who, My Little Pony: Friendship is Magic and Penguins of Madagascar 🙂

24. Do you hate anyone now that you didn’t hate this time last year?
Hatred is such a strong term. I still strongly dislike the government but I believe that was the case last year as well.

25. What was the best book you read?
Raffie Island and Queenland from the Portal series by Dee Kirkby for children’s books, Let’s Pretend This Never Happened by Jenny Lawson for adults.

26. What was your greatest musical discovery?
I didn’t listen to much music this year, so I can’t think of any.

27. What did you want and get?
To see Sammie 🙂 A Blu-ray player and Spy in the Huddle on Blu-ray. Purple penguins.

28. What did you want and not get?
My health to improve, and a hoist so I could get out of bed.

29. What was your favourite film of this year?
I watched The Hunger Games. That was awesome.

30. What did you do on your birthday?
Slept and had a takeaway. I wasn’t doing brilliantly.

31. What one thing would have made your year immeasurably more satisfying?
Being able to get out of bed, being able to communicate more with friends and family. I was still happy though 🙂

32. How would you describe your personal fashion concept in 2013?
Purple penguin hat 😛 Also wearing a purple Snuggie a lot over pyjamas.

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

34. Which celebrity/public figure did you fancy the most?
I don’t think there were any this year.

35. What political issue stirred you the most?
Welfare reform rubbish, including Bedroom Tax, PIP, ESA and other stuff.

36. Who do you miss?
Sammie, my friends.

37. Who was the best new person you met?
I honestly don’t know.

38. What was the best thing you ate?
The chip I had from Johan’s takeaway when I started recovering from my relapse just after Christmas 😛

39. Tell us a valuable life lesson you learned in 2013?
As much as I want to, I can’t save the world or even my friends. I can try and cheer them up a bit, though.

40. Quote a song lyric that sums up your year:
No songs, instead Poseidon wants his self portrait here 😛

Poseidon by Po
Poseidon by Po
Danni

New Year Resolutions for 2014

Autism, Computers, Danni, M.E., Mental Health, Physical Disability, Real Life
Fireworks in London to bring 2014.
Fireworks in London to bring 2014

Another year has passed. I am not at all ready for the start of 2014, but time carries on whether I want it to or not.

2013 was a strange year for me. I felt mostly at a standstill- I guess not really getting out of bed for over a year would do that. I’ve been up and down healthwise, and moving things into my room so I could access them from bed definitely improved my quality of life, even if it did feel a bit like giving in at times.

I’m doing better than I was a few days ago. As is not uncommon for me, I improved as rapidly as I deteriorated, so I’m able to deal with the normal level of lighting in my room again, normal (quiet) sounds, raising my head in bed, and I’m rolling over and eating better (though still not as good as normal). I even got dressed into clothes today 🙂 My speech went weird for a bit, but I think it’s finally back to relative normal (speaking is hard work but I can do it).

So, resolutions. Last year’s were all technology related:

  1. Comment more on blogs.  – I think I’ve done okay on this. Not commented anywhere near as much as I’d like, but I have commented on quite a view blogs I like to read. Unfortunately some of the ones I like have captchas that mean I just can’t comment on them, but I managed it overall.
  2. Sort out my emails.  – My emails are nicely sorted, with filters into different labels (on GMail used in place of folders) for all my different types of email. Not perfect, but it’s an awful lot better than it was. I’ve also managed to stop using my dannimatzk.co.uk email address completely. That’s a success then 🙂
  3. Sort out my Google Reader and Pocket.  – Google Reader died! That was unexpected at the time. I ended up moving to Feedly, and overall it’s working a lot better for me than Google Reader was at the beginning of the year. My Pocket is mostly clear of stuff to read now, and while it’s almost empty I’m thinking of setting up the tags to make it even better for me. Took a long time but I managed this one 🙂
  4. Try and communicate better with my friends. – This one has been a bit more hit and miss. I wasn’t expecting to be so ill for the entire year. I think I did better than 2012 but I want to carry on trying to improve.

Overall I did quite well on them. I’m going into 2014 with my technology more sorted. So now it’s time to decide on new ones for this year 🙂

  1. Have a bath or a shower. I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated. Anyway, I have a massive build up of dry skin on various parts of my body, and wipes and the occasional bed bath just isn’t cutting it now. I want to be properly clean. I have an entire year to figure out getting a bath or shower, so hopefully it’ll happen 😀
  2. Sort out health book/care plan. This is something I’ve been wanting to do for a couple of years now, but I’ve not actually got around to doing it. Recent issues with my current carer have shown that I really need to have my needs at different times down in writing, as when I’m particularly ill (and Johan is as well) that’s not the best time to be trying to explain stuff. I also want to include an alphabet board for communication when I can’t speak or type. The main issue I can see with this resolution is that I need help with printing, and whenever I ask Johan to print something for me he meows and panics. Luckily I have all year to think of a solution to that (though the sooner the better :P).
  3. Be kind to others. Sometimes when I’m not doing so well I forget that other people can be hurt by what I say or do. I’ve been incredibly touched by how kind people have been to me the last few years, and I want to try and pass that on in any way I can, and try and think of how my actions can affect others. In the event I do hurt someone else (no-one is perfect, least of all me) then I hope I will be able to apologise and try and make things right.
  4. Be kind to myself.  This has been my resolution before (I think for 2011) but it’s one of those that I think I could do with a reminder of. I’m slowly learning that sometimes to be kind to myself I don’t have to do what others want of me, and I shouldn’t be any harder on myself than I am on anyone else. I also don’t have an obligation to keep in touch with people who ultimately make me feel worse (either about my self or generally health-wise) and so I need to work on being more assertive when it comes to that.

I think that will do. Two rather practical resolutions, and two that are going to be harder to quantify but are ultimately more important. I also have some goals for the year that aren’t resolutions, such as getting an iPad with Proloquo2Go, trying to blog at least once every month and getting out of bed again, but one of those is funds related and the others are very much health dependent so I’ll have to wait and see. I’m praying this year will be better healthwise for all my spoonie friends, and as good a year as possible for everyone I know 🙂

Danni

Merry Christmas

Autism, Danni, M.E., Physical Disability, Real Life

To everyone who reads my blog (nor not, though then you can’t see this message) I wish you a very Merry Christmas. If you don’t celebrate Christmas, I hope you have a very Happy Newtonmas or Wednesday.

I don’t know what I’m doing for Christmas yet. My plans have been put on hold while I’m this ill until I improve a bit. I’m hoping to try and open a present or two, but I’ll have to see how I am. Johan is cooking lamb for his dinner, and will be making my Christmas lunch when I’ve improved enough to eat it. We’ll be putting my Christmas tree and decorations when we can.

This is the first Christmas where I’ve been this ill (though the last two December’s I also relapsed, it earlier in the month and I was improving by the day itself) so we’ll play it by ear. I’m sure we’ll find a way to make it special, even lying in a dark room with earplugs in, unable to speak and feeling horrendous. My thoughts go out to everyone who is suffering this Christmas, for whatever reason. Take care 🙂