Category: M.E.

Danni

Day 8 – Cold

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

It’s still technically Friday in Hawaii, so though this post is late it could be worse 😛 I spent most of the time asleep or wishing I was asleep.

The weather has turned really cold here over the last few days, and right now it’s -1°C (30.2°F) outside. I’ve had a rough few days, and Johan reminded me that this happens every time the weather gets like this. It’s not stopping him going out running though.

Not only is the weather cold, but I think I’ve caught another one. Is it possible to have two colds at the same time? I’d not gotten over the last one yet. I can just about deal with the broken temperature monitor, the sneezing and the worsened ME symptoms, but I really struggle with a blocked nose.

What doesn’t help is my nose is generally really dry (as are my eyes and mouth), so when it does get snotty it goes crusty really quickly. This makes clearing it out difficult, especially when my hands aren’t working enough to use the saline nasal spray to make it easier.

My body also decides that instead of breathing through my mouth when my nose gets blocked in my sleep, it’ll instead wake me up telling me I’m suffocating. My sleep has been more fractured than normal because of this. I’ve been a bit of a grumpy pants and I don’t like it.

Sammie is working on a project that she’s really excited about which in turn is making me happy. Johan is working on an app to make it easier for me to communicate with the carers when I’m not doing so good. Eventually it’ll go on a spare tablet we’ve got in the hallway and I’m hoping to be able to tell them things before they come in my room. I currently have to rely on signs on my door and they’re not usually read.

I’m hoping my body lets me sleep again soon. I’ve got things I want to do and no energy to do them. Silly cold.

Danni

Day 6 – Pain Sucks

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

Today I was reminded of a descriptive pain scale that was going around Twitter a couple of years ago. Today is also a bad pain day. Most of the time I try and get my pain low enough so that I can try and distract myself from the worst of it, and I also have poor bloody awareness so sometimes I’m not consciously aware of how much pain I’m in though it’s still affecting how I’m feeling and what I can do. I’m one of the lucky ones who between my medication, heated blanket/pad/penguins and distraction, sometimes I can still do things.

No pain scale is perfect, but I do better with ones that describe how pain is affecting my ability to do stuff rather than in comparison to the worst pain I’ve experienced or can think of. As today is a bad day, I’ve been going between an 8 and a 9.5 on the below scale. I can’t remember the last time I was below a 6, which was when I was on IV morphine. Usually I bounce between a 7 and a 9 depending on how long I’ve been since taking painkillers and if I’ve moved or had personal care done. Pain sucks but after years of it, you learn to work with it as much as possible.

0-10 Scale of Pain Severity. Image description below.

0-10 SCALE OF PAIN SEVERITY

Severity – Description of Experience

10 – Unable to Move
I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.

9 – Severe
My pain is all that I can think about. I can
barely talk or move because of the pain.

8 – Intense
My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.

7 – Unmanageable
I am in pain all the time. It keeps me from
doing most activities.

6 – Distressing
I think about my pain all of the time. I give up many activities because of my pain.

5 – Distracting
I think about my pain most of the time. I cannot
do some of the activities I need to do each day
because of the pain.

4 – Moderate
I am constantly aware of my pain but I can
continue most activities.

3 – Uncomfortable
My pain bothers me but I can ignore it most of the time.

2 – Mild
I have a low level of pain. I am aware of my pain only when I pay attention to it.

1 – Minimal
My pain is hardly noticeable.

0 – No Pain
I have no pain.

(Apologies for the poor formatting. I had to use Google’s image reader thingy and I’m struggling to concentrate because pain.)

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

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.