Category: M.E.

Danni

Day 28 – Zonk

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

Ahh, payback. I wish I didn’t experience you. I spent most of the day asleep, or wanting to be asleep but not because of tummy pain. Still on a high from going out though.

While awake I managed to grab Sammie’s main Christmas present on sale. I was able to get her the better version for less than the usual price of the standard one so that was good. Had to ask her what size to get so she knows what it is, but based on her reaction I think she’s going to like it.

I also got Johan a new high visibility running vest as the one he’s been using was “one size” which meant designed for tall, large men, which he is not. The main complaints in the reviews of the one I got were said large men saying it was too small, but those of a similar size to us both said it fit well. Since he runs a lot at night I feel much better him wearing one, and maybe he’ll argue less if it actually fits. Not exactly a Christmas present, but I’m glad I got him it.

The district nurse turned up and seemed very annoyed she couldn’t get in. The reason she couldn’t get in is that she never told us she was coming so Johan wasn’t home. It’s for a repeat blood test so I’d need him here anyway (it took well over an hour last time before it was safe for me to be left) and they have his phone number so it’s an easy thing to fix.

My tablet is mostly set up now. Still to do is connect the Hue apps to the box (requires someone to press the button on it, which I can’t reach) and fix a couple of automations in Tasker. As I’ve got all my accessibility stuff running on it now it’s a lot slower than Johan’s, but it works for me and he has his own now so he can use that instead of mine 😛

When I asked him what to blog about, he suggested I blog about how proud I am of him, which I am. But he’s not ready for me to share the reason yet, so I guess that’s all you’ll find out at this point. I can say it’s something positive.

I’m nearly done with the month of blogging, and being flexible with when I’m posting has made it a lot easier. I’ve got a couple of draft blog posts I’m wanting to post that I’ve not had the energy to finish yet, but I’m hoping to get them done before the end of the year. I have made progress on them this month and now I’m back in the habit of writing hopefully it’ll be a bit easier. It’s mostly for future Danni anyway.

Danni

Day 27 – Digestive Woes

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

I seem to have upset my digestive system. Since it can be upset by basically anything, I’m not entirely sure what it is this time, but it is quite annoying.

The worst part is having to wake Johan up multiple times a night for pad changes. He ends up being really tired the next day and I feel guilty, but he also tells me off if I don’t wake him up so I can’t win. The second worst part is the pain. For some reason I can’t cope as well with abdominal pain as well as my other various pains (the only worse one being dental/facial), so I get tired and grumpy from that. Heat helps a bit but I have to be careful not to burn myself.

My stomach isn’t currently working very well. I’m getting full and nauseous from much less food than normal (it took me 19 hours to eat one sandwich) and I’m bringing it back up for hours longer than I’m used to. My medication is also taking longer to get working as I’m still bringing it up an hour later (tramadol without the capsule tastes disgusting). It’s been dodgy on and off all my life, but sometimes it gets really bad and it seems like now is one of them.

I think I’m going to swap to mostly liquid and easily digested food for a couple of days to give it a chance to sort itself out. I usually do this when I haven’t got the spare energy to chew, but I’m fine with that at the moment. Silly body.

Other than that I’m still on a high from going out and getting my head shaved. I slept through most of the day though did get some reading done which I’m happy about. I’m expecting the worst of the payback to start hitting soon, so there may be even more sleep in my future, but that’s okay. I’m happy and that’s the important thing 😊

Danni

Day 26 – New Tablet

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

I got very lucky and my new tablet was delivered Tuesday afternoon. I still have some final setting up to do but it’s working, rooted and it charges!

Tuesday was a good day. While on my computer I managed to sort out all my emails including setting up new filters so my inbox is less overwhelming, update my care call spreadsheet (43 different care workers so far this year, 87 since I started with the agency in 2017, not including any that weren’t on my rota), and play some World of Warcraft. Got to honoured with Rustbolt Resistance and did some of the Pilgrim’s Bounty quests so I’m happy there.

The physiotherapist came, and it was fine. I’m to continue doing the exercises I’ve got when I can, and when I’m ready to progress to more ask my GP to refer me back and she’ll see me again. Since it’s going to take a while to see much improvement it makes sense to discharge me, but if I’ve got any issues I’m just to ask for another referral. She also gave me some utensil holders from the OTs to see if it’ll make feeding myself bit easier. They’re different from the ones I’ve already tried and it looks like they might work so I’m excited to try them.

I was still feeling okay after the physio left so I talked Johan into taking me to the barbers. It was raining, and it felt amazing to feel it on my face. It was a little awkward and scary getting me up the step inside, but inside was spacious and they had no problems shaving my head. There was no music playing which was a bonus, and the other barber putting the telly on didn’t bother me with my ear plugs in.

Danni in their wheelchair. They are smiling and have a shaved head with only a tiny amount of hair left, and are wearing a purple coat and glasses.

They took a lot of care, and I felt more comfortable than at the other barber I’ve been to. It was also cheaper (though I added a tip as I was so happy). They called us both sir, which I found amusing (I’m normally read as female by people under 70). The only minor downside was the smelly spray they used at the end (nice scent but a bit strong for me) but I’ll just ask them not to use it next time. I’m definitely going back there, and as it’s so close hopefully more frequently than every 7 months.

My tablet arrived at the local shop not long after I got back, so Johan went to get it then left me with it and the Surface (so I could put TeamWin on it) while he went to the doctors to sort out my tramadol (the electronic prescription didn’t go through properly or something, but I have them now). By the time he got back I was getting pretty tired as I’d been up since Monday evening, so he went for his run while I got my tablet to a working state then went to sleep.

I’m writing this on Wednesday morning (though it’s still Tuesday in some of America) and I’m a bit annoyed as my digestive system has decided to play up. Nothing I haven’t experienced before but it hurts and I’d like more sleep please. Hopefully it’ll settle down so I can rest more. I suspect the rest of the day I’ll be finishing sorting out my tablet and resting after yesterday.

While I was asleep Johan managed to get my old tablet to charge with one specific cable (probably bent just right to make contact) so he’s taken that, wiped it (as I didn’t need the nandroid backup as I’d already done a fresh install of Resurrection Remix) and installed Pixel Experience (Android 10). He says it runs much faster than when I was using it (I need a lot of accessibility apps which slow things down) so he’s happy, and I’m happy it’s not just a deadweight. I’m still glad I replaced it as I move so much that I’d probably mess the cable up so it no longer charged at all. Yay!

Danni

Day 24 – Chocolate is Good

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

Ended up going to sleep about 6am so by the time I woke up again the barber’s had shut, so I didn’t go. Not a major issue, I’ll hopefully get there next week at some point.

Since my brain was functioning relatively well when I did wake up, I decided to do a food shop. I went with Morrisons through Prime Now for same day delivery which is both good and bad.

The good: I finished the order just before 6pm, it arrived just after 8pm (8-10pm slot). This meant I could have pizza for tea with the carers rather than fish fingers, chips and veg for the third night in a row. I can also track the delivery driver on their way here.

The bad: the one substitution they told me about was wrong (it wasn’t the original product or the one they said they’d replaced it with). They also substituted a couple of other products with slightly different ones but more? They also don’t email what you ordered and it’s awkward finding past orders in the app. The app also has some very weird results for searches.

I got a refund on the replacement replacement as it was more than I was wanting to pay, and I got a message to say I didn’t need to return it, probably as it was a £1 bar of chocolate. Johan told me not to ask to return the Polish sausage (I ordered one pack of bacon flavour, got two packs of normal without it showing on the app) as he’d eat the extra. We also got 900g of chicken breast fillets in three packs instead of the one pack of 600g I ordered, so I guess we won there. I suspect whoever was doing the packing just wanted to get home.

I’ll still use it as not being able to go out to the supermarket it’s really handy, I generally like Morrisons, and free same day delivery over £40 is awesome. I do wish I could tip the delivery drivers like with the usual Prime Now as I tend to order lots of heavy items and I feel a bit guilty, but there isn’t the option for that and I don’t have much cash on me.

I was a bit annoyed at my body when it decided to ramp up the nausea levels just before 9pm, and I have no idea why. Luckily my antiemetic worked, though I’m now starting to get the drowsiness side effect from it so will be sleeping again soon. I was hoping to read a bit of an ebook or sort my emails tonight but that can wait. I still did something productive and hard. I also have lots of chocolate now and that makes me happy 😊

Danni

Day 23 – More Cuddles

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

I think I’m going through a good patch (for me), though we’ll see if that’s the still the case if I get payback from all I’ve done the last few days, including a full body bed bath, a hair wash with water, and more cuddles today 😛

I slept through most of the day, which was good as Johan was out for a Christmas thingie with one of his volunteer things. I woke up in the evening, just before he got home which was great.

This time it was Johan who’d had alcohol, and it made him more open and soppy. We ended up chatting for hours about things, some important, some not. He gave me some awesome news that I can’t share yet but I’m super excited by. He also ended up doing something really brave even though he was scared, and I’m super proud of him.

We didn’t cuddle the entire time as it would have been far too much for me, but the cuddles we did have were awesome. I wish it didn’t hurt but it’s still worth it when I can manage it. Hopefully I won’t get too much payback from everything.

If I’m awake and well enough and Johan is okay I’m hoping to go to the local barbers tomorrow to get my head shaved again, now hair isn’t disgusting. We’ve found one that’s only a few hundred metres from where I live, and only has a small step so Johan should be able to get me in. Someone complained in the reviews that they don’t play music or the radio, which sounds great to me 😛 I might not make it as it closes at 3pm on a Sunday, but we’ll see. If not, I’m going to try and make it during the week while my hair isn’t too bad. Hopefully it’ll be fine.