Category: M.E.

Danni

Coping with a Fluctuating Illness

M.E., Physical Disability, Real Life

ME is a fluctuating illness. Sufferers have good days and bad days, good hours and bad hours. For those a bit further up the functioning scale, the fluctuations are pretty easy to see. On a good day random ME person can go out and do stuff (how, what and for how long will depend on how their ME affects them, but I’m thinking out of the house). On a bad day that’s just not possible, and for anyone with moderate to severe ME a bad day can mean being unable to get out of bed.

I bounce around the bottom of the functioning scale (there’s actually several, all measuring slightly different things, but I’m at the bottom of all of them). To an observer, there’s not that much difference between a good day or a bad day. On a good day, I’m stuck in bed, incontinent, and reliant on 24 hour care. That’s still true when I have a bad day. To me though, there’s a massive difference, even if it’s only a percent or two on the actual scales.

On a good day I need the light reduced as I’m photosensitive. I can’t tolerate moderate to loud noises, and my body floods with adrenaline if the phone rings or the doorbell goes (even with all the doors shut). Sitting up will make me faint, and if I move too much my pain levels increase massively and my muscles become weaker. My muscles spasm, my limbs randomly jerk, and I’m experiencing too many other distressing symptoms to list. What I can do is speak, prop myself a bit up using the bed, manage my lamp to provide enough light to see by, my normal glasses while looking at my tablet (on minimum brightness) and the big one, go on my computer. This means I can communicate as easily as is possible for me, and I can talk to my daughter, Sammie.

Using my computer I manage our finances, do food shops, use Skype (to talk to Sammie), attempt to use Facebook to keep up with my friends and family, research whatever I need to research at the time, buy stuff, and play games to distract myself from how horrendous I’m feeling. I can’t manage it every good day (on other good days I’ll have a bed bath, change my pyjamas, and occasionally have visitors instead) but I really appreciate it when I can. It makes a massive difference to how I feel. On very good days (which are rare, maybe a couple of times a month if I’m lucky) I’ll be able to try watching a TV programme or a film, have lots of hugs (physical contact is painful) and do more work on trying to sit up without fainting. If transfers were possible (I need a hoist which I don’t have yet) good days would mean trying to get into my wheelchair, and very good days I could attempt to have a shower (using a tilt in space reclining shower chair, which has been approved but I don’t have yet, like the hoist).

Bad days are different. The computer is completely out. I need sunglasses to tolerate the lamp for pad changes and other personal care, and need it off otherwise (even with sunglasses on I can’t manage it for too long). My tablet becomes my lifeline to communicate, but I can only use it in short bursts then I have to rest. Thinking is extremely difficult and I can’t distract myself from the overwhelming pain I’m in. Communication becomes harder, as I can lose speech (or be too exhausted to speak – both happen), typing is very difficult, and my concentration and memory become very unreliable. All my symptoms become much worse, having basic care (such as pad changes) done is almost unbearable (and kept to an absolute minimum) and I often lose the ability to chew and swallowing is very difficult so I mostly live on milkshakes. I also experience random bouts of paralysis- sometimes just my arms or legs, but other times I’m unable to move any part of my body, which is terrifying no matter how many times I experience it. If I’m lucky it’ll only last a few minutes, but it has lasted days before.

I’m scared of bad days. I know some of the main triggers that are likely to cause them, and so I do my best to try and avoid them. It’s not always possible though and a lot of the time it’s out of my control. How well I am can change within hours or even minutes – sometimes getting better, but usually getting worse. Doing too much and being overwhelmed are pretty reliable causes of a bad day, yet I’m not always able to judge how much I’m able to do at any time without experiencing payback, and if the neighbours are fighting or a car alarm goes off I’m likely to have a period of relapse through no fault of my own (I can cope with relapse better if it’s because I’ve done something I wanted to do).

Due to how ill I am when I’m having a bad day, on good days I don’t feel like I’m that ill. I forget that most people with a severe disability or chronic illness are still able to manage more than I am, and see myself as more moderately ill than severe. If I hear that someone is so ill that they’re only able to get out of bed to go to the toilet, I think they’re more ill than I am, forgetting that I’m not even able to do that. One of Johan’s jobs is to remind me of what I am capable of, and also what I’m not (as if I try to do something I’m not able to do, I’m pretty much guaranteed to relapse). Since confusion and cognitive issues are part of my illness, I sometimes forget that I can’t walk, that I can’t sit up, and try to do so anyway (which never ends well). The cognitive problems can be some of the scariest, and unlike pain and nausea there’s no real treatment for them and unless you know me well it’s not always obvious how with it I actually am. At it’s worst I stop being able to understand language at all, which is scary when someone is talking to me and I have no idea what they’re saying.

It’s taken me a few weeks to write this blog post. I knowingly overdid it yesterday so am starting to pay for it now, but since it was talking to Sammie it was worth it. I’m hoping the payback won’t be too bad, and I’ll come out of it quickly. I’m grateful that even through the bad days I’m able to stay happy, and I have people who love me. Though it’s not always a good thing, I’m also grateful I’m able to forget how ill I am when I’m having a good day for me, as it makes life much more bearable. I’m hopeful that in time I’ll improve and what’s a good day now will be worse than my future bad days 🙂 I’m also very aware that there are people with ME for whom my bad days are their good days, and I really hope that they are able to get better.

Danni

I Have a Heart

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

That’s a pretty good thing, since it’s a tad hard to live without one. Update post for future reference!

  • Been rather wobbly the last few weeks. Catching a cold hasn’t helped. Could be worse, but frustrated not been able to go on puter and stuff as much as I’d like.
  • Asked several different people (including different departments of council and housing company) to try and get help with tidying and asking why I not got a hoist yet. Everyone is shocked I don’t have one yet. Hopefully will get somewhere with something?
  • One of our neighbours keeps spending money on things they’re putting in the communal areas that they’ve not got permission for. At least one of them they’ve been told not to do before. Housing officer going to investigate, and also make note on case about noise (as it’s still a problem).
  • Saw new consultant about probable POTS on Monday (the 9th). Current conclusion is I probably have POTS 😛 Luckily she saw straight away that I’m too ill for the normal tests (they require standing, and I’m unable to sit for any real length of time) so she wants me to measure my heart rate daily for a bit, is asking the CFS team to see if they can help with that, and I might need to have a 24 hour monitor at some point. Then we’re going to try medication to see if it helps. Luckily she gets ME really well (which is good, since she researches it as well as POTS) so we skipped straight to the stuff I was able to do. She even checked I was okay to have my blood pressure taken (it was, and it was normal, as it usually is when I’m anxious- when I’m not it’s usually a bit low).
  • Didn’t have any major problems with getting the stretcher ambulance organised, which is a first. They did say at first they wouldn’t be able to get a stretcher in here but they managed it in the end. This stretcher was comfier than the last one.
  • Since I’m meant to be measuring my heart rate regularly, I treated myself to a new fancy oximeter (easiest way for me to check, plus helpful for when I’m breathless to see what’s going on). Need to read the destructions to check how to use the recording and uploading to puter features, but I’ve had a bit of a play since it arrived yesterday evening.
  • When I feel my heart doing funky dances it shows as an irregular heart beat on the monitor. I’m pretty sure it’s nothing serious, but it’s reassuring to know I’m not just imagining it.
  • My heart rate goes all over the place. At my normal kinda rest, it goes between 80 and 105 bpm. My normal oxygen level is between 90-98% (I’ve turned the alarms off on this one, as the old one used to go off whenever it got to 93% or lower). I’m guessing at least some of the lower ones are due to bad circulation. I’ve not been breathless with it on yet.
  • Things that increase my heart rate are moving, holding Johan’s hand, increased pain, talking and farting. Also trying to take deep breaths increases my heart rate to over 100bpm and reduces my oxygen level down to about 90% consistently, which I think is the opposite of what’s supposed to happen.
  • Things that reduce my heart rate are thinking of penguins, lying quietly, and holding my breath (which doesn’t reduce my oxygen level until after a minute). Explains why I hold my breath during a panic attack (and with the above, why being told to breathe makes things worse).
  • Random fact: before I got ill I used to practice holding my breath for fun. At my best I could manage nearly 5 minutes, and just before I got ME I could manage 3 1/2. I’m still able to hold it for 45-70 seconds before I start feeling like I need to breathe. I used to scare people with it 😛 I thank my larger than average lung capacity and singing lessons.
  • I managed my puter for a little bit last night. Managed to sort my budget for the month and then went into World of Warcraft, where I died a ridiculous amount of times trying to do a Harrison Jones daily. I didn’t even manage to complete it before the daily reset 🙁 I’m hoping when it shows up again it’ll skip to where I was, but I’ve got a feeling I’ll need to start again. It’ll be easier if my brain is working better though.
  • Sleep has been excessive and random. I don’t have any kind of pattern to it. With having a cold though I’m just going with it, though would like to be awake when the care workers are here more often. Trying to force it though makes me more ill, as does waking me up when I’m not ready.
  • I have had my bedding changed and hair washed, though I really regretted the latter as it made me feel horrendous. I wanted it clean for going out though. I had my own pillow and duvet on the stretcher which was good as it was freezing outside (and I got to see some frost).
  • Communication is still an issue. I need to be well enough to figure out how to teach the care workers to communicate with me when it’s difficult. Asking them to offer me suggestions of what they can do and not ask me what I want doing hasn’t worked.
  • I’ve had some grumpy days recently, but I think most of that is due to having a cold (plus running out of chocolate when I was craving some). I’m still happy most of the time though 🙂

I hope everyone is doing as well as they can be. I think seeing outside my bedroom will keep me going for a bit 🙂

Danni

Things and Stuff

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

So I had a relapse. Luckily a short one (only a couple of weeks) but it was a hard one. Lots of paralysis, loss of speech, extreme sensory sensitivities, difficulty chewing, moving and swallowing. Not fun.

I think I have to accept I’m not improving as fast as I hoped. Watching telly and playing Minecraft are too much for me at the moment. The second one hurts as it’s something I like to do with Sammie, but the movement makes me dizzy and more nauseous. I’ll have to think of something else we can play together, though for now we just talk while she plays games on her computer and I do whatever.

Urgent things on the to-do list are a hair wash and bedding change. I only want to do it with a carer I trust as I’m still not quite back to where I was. I really desperately want a shower but no hoist or shower chair makes that impossible. I had a bath last June in the care home but I really need something a bit more frequent than that. Bed baths just aren’t the same and I have a build up of dry skin on parts of my body again (there is a rule at the care agency that they’re allowed to apply makeup but not creams. I have no idea why or what the logic behind this is).

I admitted on Tumblr I’m not sure that I’m a cis (not trans) female. I know I’m not male but also don’t feel female, though do like being feminine sometimes. Since I learnt that gender isn’t a binary I realised that just because I’m not male it doesn’t automatically make me female. I think I need to do a bit of exploring in that area. I’m not particularly bothered about pronouns (though male ones do make me look at you weird) and Danni is pretty gender neutral anyway so there’s not much to change. Just something for me to sort out. I’m going with genderqueer or gender questioning for now. (My sexuality is still the same- I’m bisexual/pansexual, depending on definition, as I’m attracted to those of all genders and of no gender. Gender just isn’t a big thing to me.) Identity is important and interesting.

It’s funny but the thing I missed most during the relapse other than talking to Sammie was playing World of Warcraft. I missed the end of the Love is in the Air holiday (so didn’t get all the achievements I wanted) and most of the Lunar Festival. Patch 6.1 has come out and I’ve no idea what I’m doing. I’m still not well enough to do much in game so it’ll take me a bit to catch up I think.

We’re finally getting some of the old furniture out and next week we’re getting the daybed. Esther will have a proper bed to sleep on (we already have the mattress but the sofa is in the way). When I eventually get the hoist sorted I might be able to spend time in another room!

What has been keeping me sane the last few weeks are tablet games. I’m currently playing High School Story, Hollywood U, DragonVale, Kim Kardashian Hollywood (I feel like the only one still playing this), Sudoku and now AdVenture Capitalist. Simple games that require little brain power or movement but keep me entertained. I’m hoping as I get back to where I was I’ll be able to play more complicated ones. I’ve also restarted playing Draw Something as it’s fun.

Communication issues suck. We need a better system to get things done when I’m not well enough to do them (especially food shops). Brain power not good enough to manage to figure this out yet. I need an advocate for health/care stuff, but don’t know how to get one.

Grah. Sometimes I wish life were easier. At least I have people who love me and care about me. It helps a lot 🙂

Danni

Silly Illness Stuff

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

There are parts of this illness that are really frustrating. Some are really obvious, like not being able to get out of bed, my hands not working properly and fainting when sitting up too much. Others are less so.

Yesterday I wanted to watch television. Overall I’ve been relatively stable the last few months, and I was getting a bit bored of my normal mobile games/reading stuff on my tablet/resting routine. So I watched two television shows. The first was Penguins on a Plane (which I recorded a few months ago) and the second was Supernanny US. Neither show had fast movement, loud explosions, or a complicated plot to keep track of.

Soon after finishing Supernanny, I felt horrendeous. I’d been sweating while watching telly (I also sweat when going on my computer or reading a book) and now I was alternating between too hot and too cold. My pain levels went through the roof and I was really close to throwing up. All because I watched a bit of television. Now we’re pretty good at getting my symptoms back under control so they’re bearable again, yet trying to do something as normal as watching television makes me more ill. It’s not fair.

I’m not sure what it is about watching television that my body doesn’t like. I can spend much more time on the computer than I can watching telly (though recently I’ve been going from fine to really ill in seconds when on my computer as well). If I knew what it was it would be easier to deal with. It’s frustrating.

Things have happened since my last post. Somehow I got my DLA renewed before it ran out (and we only got the form in two days before the end date). That was a massive relief. We finally got everything together to tell the housing benefit side of the council that Esther is here, so we’re no longer paying the bedroom tax (they probably didn’t complain about us taking so long because it increased our amount of benefit rather than reducing it).

I had an eye test (in bed) and it turns out I’m a lot more short sighted than I was. This brings my left eye closer to normal as it’s my long sighted eye, and makes my right eye worse. Overall my right eye is my better eye (closest to normal) but it’s also my weakest. That surprised the optician. He also said he doesn’t get many people who can read the bottom row as most people he sees are older. I’m getting my new glasses (and sunglasses) tomorrow so I’m hoping they’ll help with the double vision and stuff. Maybe it’ll make watching telly easier as well?

I saw the CFS team but there’s not much they can do until I have my hoist. They’ve written a letter to the OT in charge of it asking why he’s not sorted it yet (they phoned him last year and he said he’d speak to us before Christmas). I wanna get out of bed and all that’s stopping me now is not being able to transfer safely. I also want a shower. Some stuff is the fault of the illness, but others is people not doing what they said they’d do.

Danni

Random Sleepy Thoughts

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

I got woken up around 1am by the neighbours playing music. They finally stopped about 3am but I’ve had to take cyclizine for the nausea it caused and I’m now sleepy but not quite enough to actually sleep.

DLA form was sent last week. It’s been received but as my end date was the 11th January I’m expecting to go without for a bit.

Johan’s Carer’s Allowance was also meant to stop (as it’s tied to the DLA claim but unlike DLA is paid in advance) yet he got the full amount this morning. Cue confusion. I guess we’ll see how much DLA I get on Tuesday (it should be slightly lower).

I’ve been spending far too many hours making spreadsheets to help me organise what I’m doing in various tablet games. They’re mostly done, though I need to remember one formula I’ve forgotten and Google isn’t telling me. I’m sure it’ll come back to me.

In Dragonvale I’m trying to breed a Panlong Dragon while it’s available. There’s a chance I’ve got it as the breeding time is long enough but there are other cool dragons it can be. The spreadsheet helps me work out which habitats I need and should put dragons into, which ones I should use for breeding and helps me keep track of what dragons I already have.

In High School Story I’m trying to party for a Country female. I keep getting Country males, Slacker males and Musician males. The spreadsheet helps me track which classmate types I’ve already got, what Hangouts I need and the party times of each type. I’m also completing as meant quests as I can, concentrating on the main storyline first. It would be nice if it didn’t conform to the gender binary but I have a few classmates I head canon as trans, genderless or androgynous.

In Hollywood U I’ve finished all the current quests and dates. I’m currently partying for a Composer male, but keep getting Composer females. The spreadsheet is basically the same as the High School Story one. I’m also trying to level a male and female of each type to level 10, so it’s easier for quests as they come along. Once I’ve done that it’ll be levelling any remaining students to level 10 and the main characters to at least level 20. As I’ve a lot less students than in High School Story I only have one trans woman so far.

I’m still playing Kim Kardashian Hollywood. I nearly quit but they came out with new quests. This one doesn’t require any brain power or spreadsheets, and I just play it to see how the storyline is going.

I’ve been able to get on my computer quite a bit recently, though mostly at night so not when Sammie has been around much (though I did get to speak to her yesterday which was awesome). I’ve mostly been working on the spreadsheets but also played a bit of World of Warcraft. I did the first part of LFR on Danni yesterday, which was easy. I’m still too scared to do Heroic 5 man dungeons though, as I’ll be the only healer.

The last few days I’ve managed to watch a few Doctor Who episodes. The latest one was Time Travel Heist. It was good, and I’m liking Peter Calpaldi as The Doctor though not how he’s mean to Clara.

Now I’m sleepy tired so it’s time for me to come off my tablet and hopefully not have any nightmares. Mine have been including my pain in them and nightmares about being tortured aren’t fun.