Category: Real Life

Danni

Day 4 – Brains…

2019, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Today I spent most of the day asleep. Last night I managed to soak my bed lying on my drink tube, which meant needing an emergency clothing and bedding change. It took hours to get my body to calm down after that, so it’s not surprising I needed to sleep 15 hours. The first clothing Johan grabbed for me was my Christmas dress, so I’m currently wearing that. It’s very soft and has penguins on it, so I like it 🙂

I woke up just after the evening carers had left, which is a bit annoying. Sammie and Johan were chatting in our group chat. Being zombie brained I couldn’t contribute much, but I’m hoping to talk to her better tomorrow.

I have the optician coming out for my eye test tomorrow. I’m doing better with light overall than last time so it should be a bit easier. I know I’m significantly more short sighted than I was, because I struggle to see as far as my doorway. Hopefully new glasses will help this.

I still want to go out to watch fireworks tomorrow night. I’d need to be feeling a lot better than I am right how. Hopefully more sleep will fix it. Just need to do a few things first. Brains…

Danni

NaBloPoMo 2019 – Day 2

2019, Computers, Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life, World of Warcraft

I’m hoping to do a proper catch up post this month (mostly for future Danni’s benefit) but this week has been a bit of a rollercoaster.

The Good – This week was half term for Sammie, and she was able to come over on Tuesday which was awesome. I wasn’t up to getting out of bed, but it was awesome seeing her. We mostly just chatted and had a takeaway. I’m really happy she likes spending time with me, and that she appreciates my silliness. She’s awesome.

Also on Tuesday the physiotherapist came out to try and help with my left leg, which has decided it doesn’t want to be straight. The appointment went about as well as it could, and they gave me some exercises to try and coax it into behaving. They understood that I have to be careful about energy use so have reduced the amount I’m to do and I’m to use my own judgement about how often and when to increase them. They also said they’d ask someone about finger splints which I’m hoping will make my hands more reliable (as half my problems using them is my fingers bending backwards).

On Thursday I managed to go on my computer. It was freezing a lot when I was trying to use it, so I spent most of my time doing a reformat. It seems to have helped, though I’ve yet to reinstall everything I need. I also went into World of Warcraft and though I didn’t get the Headless Horseman’s mount this year (it’s only been 10 years of trying) I did manage to collect enough treats to get one of the Hallows End pets before having to come off.

The not so good – My digestive system really isn’t happy with me at the moment. I’m back to bringing up food a day after eating it, it’s being really crampy and generally slow, and my usual methods of sorting it out aren’t as effective as normal. When it has been moving it’s been when I’m alone so I’ve been having to ask Johan to come home which isn’t ideal. I’m hoping it sorts itself out soon.

I’ve had a cold for the past few weeks and it’s not shifting. It’s frustrating as it means I’m less able to do stuff. The worst part is my nose getting blocked when I’m asleep, and instead of just swapping to breathing through my mouth I’m woken up feeling like I’m suffocating. I can’t wait for this cold to go so I can sleep my normal level of terribleness.

I’m a bit sad I’m not well enough to go watch the local fireworks display tonight. I’ve got payback from the physio coming out and Sammie being here, so even going into the living room would be too much, nevermind outside. I really enjoyed it last year. There’s another display on Tuesday evening that’s close enough that I’d be able to go if I’m over this payback and get over this cold, but I’m probably being a tad too optimistic. Johan has gone out to the pub he usually gets breakfast from after Parkrun as the landlord is leaving, so I’m home alone tonight. I’m glad I have my earplugs.

Overall I’m still really happy, especially from seeing Sammie. Just wish my body would behave better and that chronically ill peoples were exempt from normal people illnesses like colds. I like being able to breathe.

Danni

NaBloPoMo 2019 – Day 1

2019, Danni, NaBloPoMo, Real Life

There used to be a month long blogging challenge to post a blog post every day in November called NaBloPoMo (National Blog Posting Month). It was the blogging version of NaNoWriMo (National Novel Writing Month). There’s no longer a main site for it, but I used to find it useful for getting back into the habit of blogging regularly. This post is for day 1.

My plan is to attempt it for 2019, as I miss blogging but haven’t known what to blog about. To allow for the fact I’m ill (and sometimes sleeping 18+ hours a day) I’m gonna be lenient with the timings (so long as it’s that day somewhere in the world I’ll count it) and I’m going to try and write a couple of posts in advance (like this one). I’ve got a couple of topics I know I want to write about, and I’ll be looking for blog memes I can use for when my brain isn’t working great. Worst case scenario, I’ll be posting a picture of a penguin or a favourite YouTube video 😛

I never did finish off my end of year blog posts, but that’s okay. I can do them next time. I’m hoping that getting back into the routine of blogging will help me process my thoughts and also work as a kind of diary as I have a terrible memory and I can’t remember what I’ve done. I’ve used my blog several times so far this year to figure out when things happened or I did certain stuff.

A more detailed summary of what I’ve been up to and how I am will be in one of the month’s blog posts, but I can say that overall I’ve been about the same. Still mostly in bed, enjoying the times I can get out of it, and glad I’m nowhere near my worst. I’ll take it 🙂

Danni

Severe ME Day 2019 – What I Miss

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

The 8th of August is Severe ME Day. Last year I wrote about how it affects me, and other than struggling more with communication it’s not changed much.

I’m one of the lucky ones – I have the support I need, and I’ve massively improved from my worst where I spent a lot of time paralysed, had to be flat almost constantly and couldn’t tolerate much light, sound or touch. Eating was such a struggle I ended up underweight. Some people are like that, or worse, everyday. Some people with Severe ME die.

Now I can be propped up, watch easy television and videos, listen to podcasts if they have a transcript I can read (or don’t require concentration), and have lots of hand holds with Johan. On good days I can have hugs, be hoisted into my wheelchair or be washed. Once a month or so I can go out on adventures so long as they’re close by. I’m happy to have improved, but I still miss a lot of things.

These are some of the main things that I miss:

  • Special events. I’ve missed multiple weddings, a couple of funerals and a lot of Sammie’s special days over the years. Not being able to be there for people hurts.
  • Talking to friends and family. Other than Johan, my care workers and, to a lesser extent, Sammie, I don’t talk to people much. Communicating is now one of the hardest things to do, as it takes up a lot of my energy and I often forget to respond. This is probably also related to also being autistic.
  • Seeing friends and family. Even when I try to make plans for friends to visit or to meet up locally, there’s no guarentee I’ll be well enough on that day. Having to cancel seeing friends is one of the hardest things about having a fluctuating illness.
  • Being independant. I tolerate having other people help me with washing, dressing, toileting, teeth brushing, moving and other stuff, but I really want to do them myself. Sometimes I’ll do things by myself even though I know it’ll cause payback afterwards.
  • Getting washed/changing clothes frequently. Touch is incredibly painful for me, so I can only tolerate getting my body washed (even with wipes) or changing my top on my good days, which is roughly once a week. Hair washing is even less frequent (5 times so far this year), which is why I get it shaved off when I’m able to get to the barbers.
  • Hugs. I love hugs, but they’re really painful and cause payback. Sometimes that’s worth it, but it means I can’t have them as much as I would like.
  • Independant mobility. I don’t really miss being able to walk (possibly as it was painful even before I got ME), but I do miss being able to get around by myself, either by crawling or self propelling a wheelchair. My current wheelchair requires someone else to push it, and I’m not currently well enough to use a powerchair.
  • Tidying/cleaning/organising. Johan is not good at this. I wasn’t great at it, but I was better than he was. I now need to rely on other people to sort out my room (or the rest of the flat), and though we have a cleaner who helps, it’s not how I’d like it. I don’t have the energy to direct other people in how I want it done.
  • Feed myself soup with bread. I’m very stubborn especially when it comes to eating, and will feed myself unless I absolutely can’t. I can’t manage cutlery properly so if I have soup I need it in a Sucup (special cup with lid and thick straw) which means I can’t dip my bread in it.

I’m very lucky to be able to do what I am. Today I’m thinking of all those with Severe ME who are unable to do things I enjoy, and the family and friends of those who have died to this illness or its complications. It sucks.

Danni

Still Alive

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

So doing monthly reviews didn’t happen, and I’ve still not even finished all my end of year posts. Mostly because although I was doing better with physical stuff and things like watching telly and listening to podcasts, actually posting things (here and in places like Twitter and Facebook) was really hard for some reason.

My new wheelchair continues to be awesome. I went on an adventure in February, which included rejoining the library so I could access ebooks, getting my head shaved at the barbers again, and trying out a new restaurant with Johan. I technically was well enough to go out again in March, but Johan had planned to go running three nights in a row in the middle of nowhere so I had to save my energy for going into respite.

Respite went about as well as it could. A couple of issues but they were sorted quickly and we’ve got some ideas for improving it next time. The main issue was the noise, which unfortunately there isn’t much that can be done. I wore ear plugs continuously and occasionally added my ear defenders as well, but I could still hear all the call buttons and yelling (as most of the residents are deaf, not because anyone was angry) even with my door shut. The problem with it being a good care home is there aren’t exactly many spare rooms so they have to put me where they can, and the nursing floor has the call buzzers going off for all floors (and I’m down for nursing care for some reason :P). I also had a bath while there which was awesome 🙂

The first weekend while I was in respite Johan did the Dark Skies Kielder Triple, where he came fourth (and in the double). That was a 10 mile race the first night, a 26.5 mile “marathon” the second night, and a 14 mile “half marathon” the third night. The triple is doing all of them, the double is dropping the 10 mile race. He really enjoyed it and luckily on the last night it was clear enough for him to see the stars, which he said was amazing as Kielder has very little light pollution. I’m really proud of him for managing it all and doing so well.

When he got home he visited me (and enjoyed not having to be carer for a bit) and also rode on trains to various places in northern England, including Carlisle and visiting his parents in Leeds. The weekend after he was in London for QuickCade, a speedrunning marathon. I managed to watch his run of Chiki Chiki boys, but wasn’t really well enough to watch more. I had hoped to catch up on some TV shows and such while in respite, but the noise and changes to my usual routine meant I wasn’t coping as well as I hoped.

Coming home was fun, especially as I wasn’t really well enough to travel, but being back in my own, quiet bed was amazing. Johan says that pushing me up the hill from the care home to our flat is harder work than doing the Kielder triple 😛

Since then I’ve mostly been resting. I gave up mindlessly browsing Reddit for Lent, which has been a little hard at times but meant I have had time for other stuff, mostly reading TV Tropes. I’ve managed reading a few books which I’m happy about. Yesterday was the first day I felt kinda with it again since getting home, and today I’ve been well enough to go on my computer where I’ve sorted some stuff out and managed to play a bit of World of Warcraft.

Sammie introduced me to Happy Colour, which is a colouring app where you don’t need to choose the colours so great for me when I’m not doing so well. It’s pretty much replaced the cross stitch app for now. I’ve also stopped playing Animal Crossing Pocket Camp as the constant events meant I felt overwhelmed, and they introduced new features that pushed the fortune cookies (loot boxes) even harder. I’m still playing Godville and Neko Atsume, and I’ve started Lost Island and restarted Gardenscapes as well.

I’m hoping that now I’m over the worst of the payback from going into the care home I’ll be able to do more again. I was well enough to get out of bed today but Johan had other plans already so I’ve gone on my desktop computer instead. The next respite will be the end of June when Johan runs the St Cuthbert’s 45 mile ultramarathon, so plenty of time to do things before then 🙂