Severe ME Day 2018 – How It Affects Me

Yesterday was Severe ME Day. While the normal ME awareness stuff happens in May, today is about the 25% of patients at the severe end (though even mild ME has a massive effect on someone’s life). This blog post is late because I ended up sleeping most of the day. I previously wrote about what ME is in 2012.

I’ve had ME for nearly 9 years now. I’m not sure exactly when it became severe: I became unable to walk completely in January 2011, and by August that year I could only manage 10 minutes sitting upright before getting severe symptoms, so probably about 8 years ago. There’s different levels of severe, and I have bounced around there since then. It probably didn’t help that I had POTS already and that I had moderate ME from the start (mine was triggered by swine flu that never got better).

At this point, I’m ~99% bedbound. By that, I mean I am doing well if I get hoisted into my wheelchair once or twice a month. I’m lucky that on those days I often can get out, as my wheelchair tilts and reclines so I’m more lying down than sitting up. I also have a husband who is both strong and stubborn, and willing to push me even though there’s a lot of hills around here πŸ˜› I consider myself at the higher end of severe most of the time.

I basically need 24 hour care. My hands don’t work properly (they shake and spasm a lot, especially when trying to hold things) so rely on other people to help me with things like drinks (I mostly use bottles with tubes as I can’t lift a cup), making and cutting up my food, as cutlery and my hands tend not to get on and I’m stubborn and want to feed myself, changing my incontinence pads (as I’m doubly incontinent), managing and helping me with medication, washing and dressing me, brushing my teeth, heating my penguins for pain relief, picking up the many items I manage to knock on the floor, rearranging my cushions and bedding, and all the other little things that need doing each day. I also have no sleeping pattern so I can need help at any time of the day or night.

I have three daily calls from a care agency but the rest falls to Johan. The only reason I can be left alone while Johan is out is because of technology: so long as I can still type on my tablet, I can ask Johan to get back home quickly, or he will contact the care agency to send their on call person (we’ve yet to need this but the option means Johan can go more than 20 minutes away). If he’s away overnight, I need someone to stay with me or go into a care home (like when he went to Sweden for a couple of weeks).

Danni is in their wheelchair. They are wearing a purple shiny mermaid tail.
Danni on a good day. I went into Newcastle as a mermaid πŸ™‚

How much help I need varies depending on how ill I am. On my better days, I can go on my computer or laptop, raise the head of my bed, watch TV or play games, open the curtain a bit, and that once or twice a month outing in my wheelchair. In a weird way I actually need more help when I can do more, as I keep dropping remote controls and other stuff, drinking more (I have three 1 litre bottles for drinks, but I can get through them quickly some days), need more frequent pad changes, and help moving my laptop or helping me with my computer, and if I’m in my wheelchair I need someone to push it (and I still drop everything- if I’m an expert at anything it’s knocking and dropping items). I also need to be having a pretty good day to be able to tolerate having my clothes changed or washing more than my hands and face. Even on my best days I still feel incredibly ill, am in massive amounts of pain in my muscles, joints and nerves, have to ration my energy as I get exhausted easilyΒ 

Danni is lying in bed in their back. They are smiling. The image is tinted purple from a light behind the bed.
Danni on a normal day. Purple light is normal on those days as it’s not as bright as white, and is my favourite colour.

On my more normal days I tend to sleep or doze more, so Johan just needs to be able to contactable as I tend not to get myself into too much trouble when asleep πŸ˜› It’s not unusual for me to sleep for 12-16 hours, and when I am awake I use my tablet to communicate/entertain myself. Johan prefers going out for his longer runs when I’m asleep as he worries less then and he’s less likely to get an urgent message to come home (though sometimes I wake up and it happens anyway). I can usually manage low levels of light and sound with my curtain up and ear plugs in. Moving, beyond rolling over every so often to prevent bed sores, is a bad idea.

Danni is lying in bed. They have an eye mask on that also has ear muffs, a sick bag in front of them, and their left hand is resting on a penguin.
Danni on a bad day (I tend not to have photos taken on bad days. The white thing is a sick bag).

On my bad days, I can’t really move at all. I also struggle to chew and swallow, can develop a high temperature and often vomit despite my antiemetics. All my other symptoms get much worse as well, and sometimes my body decides that full body spasms should happen. This means I need someone to help move me every couple of hours to prevent bed sores, can only drink liquids, and pad changes and other personal care must be kept to a complete minimum (as even having my teeth brushed is torture). Any kind of noise or vibration is too much to cope with, so Johan has to move very quietly, can’t run the washing machine, and for him to shower he needs to make sure I have ear plugs, ear defenders and close all doors, and it still is horrible. My smell sensitivity also gets a lot worse, so he can’t have any food that is smelly like curry. Those days he has to stay in, as before I’ve ended up unable to swallow and at that point I need hospital, as though it’s the worst place for someone with severe ME drinking and medication are needed. As I often can’t speak I use my tablet if I can move and manage the light with my sunglasses on, gestures if I can’t but can move my hands, and answer yes/no questions through head movements or heavy breathing when completely paralysed.

Bad days are usually caused by doing too much, whether that’s physically (moving too much, trying to sit up for too long, travelling when not well enough), cognitively (usually talking to someone for too long, or trying to concentrate to fill in a form or for an appointment) or because of sensory overload, such as loud noises like alarms (or the care call noise), neighbours arguing and banging, a care worker wearing strong perfume or similar. I try to avoid them as much as possible, and they can last from a day or two to months.

I consider myself very lucky. I have Johan, who is the most amazing carer and just an awesome husband. I have a pretty decent care agency, and most of the care workers are good and understand things, including how variable things can be (especially that there’s a decent chance I’ll be asleep for their calls). My GP, the district and practice nurses, and the CFS team (I don’t like it being called CFS but the team themselves are decent to me) all visit me at home. My medication works well enough that most days I can cope with the pain and feeling so ill. I do have good days where I can do more or even go out. I have all sorts of awesome technology and equipment that makes things easier, from the big and expensive like the hoists, hospital bed and alternating air mattress, to the small and/or cheap like Hydrant bottles with tubes, voice or tablet controlled colour changing lights, my 12 feet U shaped cushion, and bulk bought ear plugs. We know how to manage things to reduce the amount and often the length of my relapses.

For some people, my bad days are the norm or worse. They might need tube feeding, be unable to tolerate any kind of light, sound, movement or touch, and haven’t left their bed for years or decades. Some have family or medical professionals who don’t believe they’re ill or think it’s all psychosomatic. At its worse, it can result in death, from the illness itself, complications or other illnesses that were caused by, worsened or couldn’t be treated because of the ME, and sometimes suicide as understandably, some people just can’t cope.Β 

I am thinking today of all those who have or had severe ME, especially Emily Collingridge and Merryn Croft who both died from severe ME since I’ve been ill. I am thinking of all my friends who live with this illness, and that they improve soon. I am hoping that there will be better treatments and hopefully a cure for this horrible disease, which for so long hasn’t had the research and understanding it needs, and soon.

The ME Association has an article for Severe ME Day, about two teenagers who live with it. It’s a decent website for finding more out about the illness as well.Β Press Release: Two teenagers hit by devastating severe M.E. reveal the brutal reality of life with the disease.

Week 30 Review

Danni is smiling. They are wearing a purple penguin dress without sleeves, and have Poseidon the baby Emperor Penguin on their shoulder.
Danni and Poseidon

Been another mixed week, with some really good bits and some not good bits.The best bits were getting a bath (first time in 2 years) and seeing a friend πŸ™‚

I had the bath on Tuesday, and this time remembered my penguin bath toy. I was allowed to just soak in there for about 10 minutes with the light off which was amazing. It was nice to be properly clean again.

I saw my friend Marga on Sunday, after having to cancel the week before due to migraine. She is awesome and the time disappeared really quickly. Talking to her helped me feel better after some not great days.

Wednesday and Thursday nights were not good. I’m meant to have hourly checks as not able to use the buzzer, and though on a night time this often becomes 2 hourly due to lack of staff (2 care workers for 22 residents, most of whom need a lot of help) those nights it was even worse than that, resulting in being covered in my own poo for hours (diarrhoea caused by my body disagreeing with the food). The resulting washing and bedding and clothing changes made me feel horrendous. A couple of the care workers also made me feel really guilty for needing frequent help, which also wasn’t good. (From the future: I did put in a complaint the day I came home.)

When more with it, I spent a lot of time watching TV shows I needed to catch up with. First was Steven Universe, which both confirmed a theory I’d had from season 1, but also gave me a lot of other questions. I now have to wait for new episodes to come out, which I’m not used to. I also watched some of last year’s Doctor Who. Bill is an awesome companion, and I’ve really enjoyed these episodes.

I didn’t watch much of ESA this year, but I did catch the last race and the closing speeches. Saw Johan on the stream which was good (though I did have to check it was actually him – silly face blindness :P). It looked like a really good event, and now I just need my body to let me travel so I can go next time πŸ˜›

  • Overall mood – Mixed: awesome for Tuesday and Sunday, bad for Thursday and Friday, good for the rest of the week, with mostly high symptoms.
  • Average daily sleep – 8 hours 47 minutes
  • Longest sleep – 15 hours 5 minutes from Friday afternoon to Saturday morning (deep sleep 56%)
  • Clothes changed – 7
  • Wipe wash – 6
  • Water wash –  1 (in the bath!)
  • Hair wash – 1
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episodes 4-8, Steven Universe up to Season 5 episode 25
  • YouTube videos watched – Some
  • Streams watched – ESA Marathon on Twitch
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale episodes 42 and 43
  • Blog posts written – 1
  • Penguins cuddled –  Primrose. Nicky, Isabella and Poseidon
  • Johan hand holds – 0 (he’s in Sweden)
  • Johan hugs – 0 (ditto)
  • Time on Twitter – 1 hours 56 minutes (average 16 minutes a day)
  • Time on Reddit – 38 hours 41 minutes (average 5 hours 31 minutes a day)
  • Time on Facebook – 3 minutes
  • Other –
    • Day staff are good, especially since they let me sleep now they know I don’t want waking up every hour.
    • Some night staff are great, and are just struggling due to not enough of them. Some, not so much.
    • Got soaked when someone didn’t put the top on the Hydrant properly and it fell off the bed. That was not the most pleasant thing ever, but it did cool me a down a little bit.
    • Some of the staff don’t understand my communication issues. Turns out even writing them down in a guide doesn’t always help.
    • WordPress has a new editor and it’s weird. If this is messed up, that’s why πŸ˜›

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 116
  • Godville Heroine Level – 57 (10% done)
  • Godville wood for ark – 33.6%
  • Godville savings – 1 million, 426 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (15 hours 37 minutes, average 2 hours 13 minutes a day)
  • Other –
    • Just about completed the Gyrodite event in time. It was annoying.
    • New fishing event, which was really annoying. Bought the golden rod with leaf tickets (premium currency) and though I completed the main goals, I didn’t get all the items. They made it a lot harder and I’m not happy.
    • Spent very little time on other games, but did finally complete another cross stitch while listening to podcasts.

Week 29 Review

Danni and Johan are outside. They are both smiling.

Danni is in their wheelchair. They are wearing a purple mermaid tail.

Two photos! One outside our front door before travelling to the care home, one in my bedroom in the care home.

Been a bit of a mixed week. Monday I was preparing to go into the care home, and Tuesday was the day I went in. During the day it’s mostly been okay after resolving some misunderstandings (I asked for hourly checks as I’m not able to use a buzzer, and they thought that meant waking me up every hour). Night time, not so much. There aren’t enough staff for someone to check on me hourly, and that means lots of pad leaks and needing entire bed/clothes changes and washes, which make me feel horrendous.

Johan is in Sweden for ESA SummerΒ (ESA as in European Speedrunning Assembly, not one of the other ESAs). I’d much rather be with him or at home, but that’s not an option so I get to stay in a care home for a couple of weeks instead. The staff are fine, but it’s not home and they’re not really used to someone like me (mostly able to communicate but needing prompting for things I need). This time I brought the Surface and my normal Tablet, and I had downloaded some shows to watch to save the data on my phone.

Didn’t get out of bed this week after arriving, mostly because of feeling rotten from the journey/needing lots of bed changes/exhaustion from trying to cope with a new environment, new people and stuff. My room is really hot and I didn’t think to bring a fan. I do have Poseidon, Primrose, Nicky and Isabella with me and have been talking to Johan and Sammie through Hangouts. I’ve also spent far too much time on Reddit, as it’s the only thing I can concentrate on at times.

  • Overall mood – Mostly good with high symptoms, as was only tracking once a day.
  • Average daily sleep – 10 hours 29 minutes
  • Longest sleep – 18 hours 57 minutes from Saturday night to Sunday evening (deep sleep 61%)
  • Clothes changed – 4
  • Wipe wash – 1
  • Water wash – 3
  • Hair wash – 0
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episode 3
  • YouTube videos watched – Lots
  • Streams watched – Penguin Cam and stuff on Twitch
  • Music listened to – Random selection from Google Play while travelling to care home
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – A few before he left
  • Johan hugs – 0
  • Time on Twitter – 9 hours 1 minutes (average 1 hour 17 minutes a day)
  • Time on Reddit – 33 hours 1 minutes (average 4 hours 43 minute a day)
  • Time on Facebook – 5 minutes
  • Other –
    • Migraines are evil. Had to cancel a visit because of one.
    • It’s noisy here, especially as some residents have dementia and spend most of their time shouting or screaming. Still better than our upstairs neighbours at home though (as it’s not arguing).
    • Wanting chocolate but Amazon is rubbish for it.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 115
  • Godville Heroine Level – 56 (75% done)
  • Godville wood for ark – 33%
  • Godville savings – 1 million, 396 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (4 hours 10 minutes, average 35 minutes a day)
  • Other –
    • New Gyrodite event in Animal Crossing. Not been concentrating much on it.
    • Not been playing much of my other games either, mostly logging in for daily bonuses and that’s it.

Week 28 Review

Danni smiling with clean hair.

I had a proper hair wash so celebrated with a photo πŸ™‚

Was mostly a good week. Was still on a high from seeing Sammie, and when I was awake I felt up to watching lots of stuff, like football, Netflix and YouTube. I had some anxiety as the care home for respite didn’t get sorted out until Thursday, and I was struggling to modify my care information booklet to make it suitable for staying there instead of having home carers (as they’ll need to do more stuff and they don’t need to be at set times with 24 hour staff).

Was a little annoying that I felt up to going out and doing things but I needed to save my energy for travelling to the care home. On the Monday though I had a hug from Johan, which was well worth the pain it caused.

  • Overall mood – Awesome/Good, mostly normal level of symptoms
  • Average daily sleep – 9 hours 17 minutes
  • Longest sleep – 15 hours 41 minutes from Saturday morning to Sunday morning (deep sleep 61%)
  • Clothes changed – 1
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 1 (and it was a proper one with water and shampoo!)
  • Books read – Started This is True book 1
  • TV watched – Lots, including football (France beating Belgium, Croatia beating England), Steven Universe and Ultimate Beastmaster on Netflix
  • YouTube videos watched – Too many to list
  • Streams watched – Playerunknown’s Battlegrounds and Fortnite on Twitch and Rockhopper Penguin Cam
  • Music listened to –0
  • Podcasts listened to – Welcome to Night Vale episodes 40 and 41
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – Yes! A big one on Monday!
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 18 hours 10 minutes (average 2 hours 35 minute a day)
  • Time on Facebook – 9 minutes (average 1 minute a day)
  • Other –
    • Really happy to be well enough to watch stuff again. I have a lot to catch up on.
    • Johan hugs are awesome.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 112
  • Godville Heroine Level – 56 (42% done)
  • Godville wood for ark – 31.7%
  • Godville savings – 1 million, 332 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (25 hours 6 minutes, average 3 hours 35 minutes a day)
  • Other –
    • Played a ton of Animal Crossing to complete the Dappledot event. Managed to do so a day early.
    • Tried to return as many Dappledots as possible to friends who sent them, but there were just too many.
    • Finally finished a cross stitch while listening to Welcome to Night Vale.

Week 27 Review

Danni is lying in bed, sticking their tongue out while holding a Fab ice lolly in a red holder.

I remembered to take a photo this week! I was talking to Sammie and Johan while on the Surface and took this photo to show off my ice lolly. It made sense in context.

This week has been really hot. Luckily my bedroom is sheltered from the sun, so I’ve been fine with just my window open (and ear plugs to cope with the increased noise). I do have a fan but I’ve not needed it yet.

Health-wise it’s been an up and down week. Other than a couple of migraines (I think I might need to investigate why they’re becoming more common) I’ve not been too bad so long as I don’t move much. By the end of the week I could even move a bit without agony, which was great. The migraines were not fun though, and I also had sleep paralysis that meant I needed Johan to come home early as I couldn’t move while the carer was here.

As I was okay with light and sound for me, I watched a lot of stuff on the telly. Mostly football, but also some YouTube videos. I’m happy that England got through to the semi finals of the World Cup, though as Sweden were my second team I was a bit sad they lost. The other games I mostly had on in the background while working on other stuff, as I wasn’t as invested in them.

Most of the good stuff of the week happened at the end of it. The big one is on Saturday I saw Sammie! She is towering over Johan now, and if she’s not as tall as me yet then it won’t be long. She came over as Johan was taking her to a gaming exhibition in Newcastle that is there as part of the Great Exhibition of the North. They both said they enjoyed it, and I gave Johan some money so they could get food afterwards. I would have liked to go myself, but I wasn’t well enough.

The current idea is for Johan to take Sammie to other places I would if I were well enough, especially the more active ones, but I hope to join them for the more accessible outings if well enough. Will need to check with everyone involved first, and Johan is off to Sweden in a couple of weeks so we’ll look into it more when he gets back.

We got a brown envelope of doom from the DWP, but luckily it was a positive one: I’m staying in the ESA support group without needing a work capability assessment. I didn’t see the form Johan filled in (as he’s my appointee and it’s too much for me) but he must have done a good job. My money is sorted at least for now, which is a big relief.

Sunday morning Johan ran the Great North 10K, and even though it was really hot he ran a personal best, finishing in less than 41 minutes and coming 77th out of 4487 finishers. He’s really happy and I’m very proud of him. There was also a picture of the Running Ninjas on the local newspaper website that was awesome. I was recovering from Saturday so he was able to stay out with his friends for a bit afterwards (the afternoon care call helps with that).

I spent some time this week working on adapting my care instruction book for when I’m in the care home. Unfortunately the care home we hoped I’d go to hasn’t confirmed they have the room for me yet, so I’m getting nervous as I’m meant to be going in just over a week. If they can’t take me I have a couple of alternatives we can ask, but they’re a bit further away which isn’t great for me. I’m sure it’ll get sorted in time, I just don’t like the uncertainty.

Next week is mostly going to be preparing for going into the care home and Johan going to Sweden. Johan has joined a group to do Relay for Life at the weekend but we don’t know what times yet (he can’t stay all day because of me). There’s also more football which I’m looking forward to, especially the England game.

  • Overall mood – Good/Awesome at the weekend. Mixture of high and normal symptoms depending on the day.
  • Average daily sleep – 10 hours 11 minutes
  • Longest sleep – 14 hours 41 minutes from Wednesday morning to Wednesday afternoon (deep sleep 64%)
  • Clothes changed – 2 (One Day I’ll Take Over The Planet penguin top on Monday, Zen penguin’s guide to hoppiness and purple loose trousers on Saturday)
  • Wipe wash – 2
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – Lots of football
  • YouTube videos watched – Tom Scott, Jessica Out of the Closet, vlogbrothers, hankschannel, Mr Puzzle and standupmaths.
  • Streams watched – Rockhopper Penguin Cam
  • Music listened to – None deliberately, but I heard a lot of Three Lions being sung.
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Dozens
  • Johan hugs – 0, but 2 Sammie hugs!
  • Time on Twitter – 6 hours 10 minutes (average 52 minutes a day)
  • Time on Reddit – 28 hours (average 4 hours 1 minute a day)
  • Time on Facebook – 26 minutes (average 3 minutes a day)
  • Other –
    • My bed has been fixed! Just had the controller replaced and a lock added so the carers can’t pull it out again.
    • New upstairs neighbours get very shouty sometimes. I do not like. I was hoping we were over that after the last shouty neighbours were gone (though I don’t want them murdered).
    • Sammie is super awesome! She had a “rant” about how much she loves her family. It was amazing.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 111
  • Godville Heroine Level – 56 (11% done)
  • Godville wood for ark – 30.9%
  • Godville savings – 1 million, 281 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (13 hours 41 minutes, average 1 hour 57 minutes a day)
  • Other –
    • I keep meaning to do more cross stitch but forgetting. Maybe this week.
    • Just managed to get the gold fishing trophy in Animal Crossing but didn’t complete it.
    • There was a big update in Animal Crossing. Now animals can get to level 25. There are also some UI changes that make things a bit easier but I still need my spreadsheet to track things.
    • New flower event started on Friday. This time it’s collecting Dappledots from sunflowers. I’m doing okay with it, but the second half is usually much harder.