Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Pain is a Pain

Autism, Danni, M.E., Mental Health, NaBloPoMo, Penguins!, Physical Disability, Real Life

Grazing didn’t work. Had same pain after the banana, whole wheat shortbread with fruit compote (from my Graze box) and the small piece of chocolate cake, I probably should have realised it wasn’t working after the banana but I’m stubborn. Will be contacting the doctor tomorrow- a friend has offered and if Johan can’t do it by the afternoon, I will take her up on it. My food intake is still inadequate and I’m still losing weight. Got some suggestions of other things to try so will keep them in mind and see what the doctor says.

Pain is frustrating. I have muscle and joint pain due to the ME. Without painkillers it’s intolerable, but with tramadol it’s down to a level where I can distract myself with other things. It’s not gone, but I can cope. I have a constant sore throat that sometimes makes choosing food hard as how painful it is can vary, but it’s always sore. Has been since I got ME over 3 years ago so I’m used to it now. When my muscles spasm that is often painful as well, and annoying as I can’t control it. Some of the muscle spasms are more annoying than painful though, such as the ones in my bum cheeks. The bladder spasms are bad because they can be painful and can cause incontinence, or retention depending on which muscles are in spasm (that area all feels the same to me but I’ve had both outcomes). Unlike the urinary retention that I had with the lansoprazole though, that one resolves when the muscles stop spasming so isn’t as dangerous (though still annoying, painful and uncomfortable).

Then there’s the pain I’m now getting from lying or sitting in one position for a while. As moving is exhausting I can’t move around and fidget as much as I used to, and now I get sore around the bony areas of my hips and bum. I’m going to speak to the doctor about that as well, as it’s worst when I’m sleeping as I don’t move in my sleep at all, and wake up several times a night with my hip hurting loads and needing to roll over. Having to spend nearly all my time in bed isn’t helping, but even when I’m in my chair wiggling is really hard work.

I have indigestion and tummy pains quite a bit, and I think I’ve been diagnosed with Irritable Bowel Syndrome (I call it IBS type symptoms as normally they’re just annoying and I can’t be sure they’re not caused by something else as I’ve not had it properly investigated yet, because other things have been more important). I swap between constipation and diarrhoea (and very occasionally have neither) but that’s been normal for me, and having to explain that the tramadol wasn’t causing constipation unless it was also causing diarrhoea was quite frustrating during the last relapse. On that note, I always have constipation during a relapse, along with urinating less and not getting hungry as often, if at all. My body seems to shut down pretty much everything, but then goes back to normal afterwards.

I also frequently get headaches, but what type varies quite a bit. Sometimes they’re one sided, with an increase in nausea and over sensitivity to stuff. Those tend to be really bad but I can normally rest or sleep with them. Sometimes they’re all over my head and hurt, but don’t affect me too much so I just get on with things (these are the most common, and I have one now). Sometimes they feel like they’re in or around my eyes, and moving my eyes makes it worse, and I feel horrendously sick and nothing fixes them and I can’t sleep through them. Luckily those aren’t that frequent. Sometimes I get really sharp stabbing pains in my head, that make everything else not exist, but rarely lasts more than a couple of minutes. Sometimes I have headaches that aren’t like any of those ones.

Even before I had ME I wasn’t pain free. I had my dodgy right hip, which the doctors couldn’t be sure of the reason for (they thought it was bursitis, the ultrasound didn’t show anything but the radiographer said that may be because it had been going on for several years at that point. It might be something else though). I had general aches and pains, probably caused by depression. I seemed to catch every cold and virus going. The hip pain started when I was 15, but even before then I had growing pains, headaches, caught every cold going, was clumsy so often had bruises and scrapes, and had acid reflux constantly from at least the age of 6 (could have been earlier but I distinctly remember having it at 6 years old, not that I knew the name of it and I didn’t realise it could be treated until I started the lansoprazole and it went away). I can’t remember the last time I had no pain at all.

Pain is exhausting. It takes so much energy trying to cope with it. That’s why I actually have less fatigue when I take tramadol than when I don’t- even though it’s meant to cause drowsiness, the lessened pain means that I actually have more energy and feel less tired when I have it. Pain also makes me very grumpy, though as I don’t like being grumpy I try to cheer myself up, and my friends help as well. This new gallstone-like pain is bad because it exceeds my normal coping levels, and the tramadol only helps a tiny bit if it’s taken after it’s started (and doesn’t seem to help at all if it was taken too far before it). I try and distract myself but it’s distracting from the distractions. Luckily that particular pain comes in waves, so in between I can manage, and distract myself and prepare for the next lot. I got good at trying to deal with it when I had gallstones when I was 17-18 (I didn’t see a doctor about them for 6 months as I was told it was just acid and to stop being so over dramatic). Heat also helps- I used to get into a hot bath, but now I have my penguins.

What doesn’t help is that I have poor body awareness and that often I don’t know where I’m in pain, or sometimes even that I’m in pain. Johan sometimes has to tell me I’m in pain, as he can see it from my facial expressions, body language, grumpiness and stuff. This also makes it hard when trying to tell doctors about my pain as it can take me a long time to locate it, and sometimes I never localise it completely. I’m just grateful that it’s normally not more than I can cope with.

Johan is amazing with helping me cope with pain. He heats up my penguins for me, and sometimes my other wheat bags if I need them. He helps me with my pillows to get me as comfy as I can. He talks to me when I can cope with it to try and distract me. He holds my hand when I’m not able to have cuddles. He also gives me my tramadol- even to the point of putting it in my mouth for me when I can’t get it there myself. He also gives me ibuprofen when I have certain types of headache (as it helps more than tramadol for some of them). He talks to me to try and distract me. He holds my hand when I can’t manage cuddles but need some contact. And he knows when to leave me alone to rest, even if I don’t really want him to go. He does so much for me, and I don’t think I could cope as well without him.

Danni

Acceptance

Autism, Danni, Gaming, Important Stuff, M.E., Mental Health, NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

Guess who forgot not eating for a day and a half would also cause pain? Yeah. After a really restless night, I had some food this morning- cheese and ham and crackers. And it was fine, no pain. Yay! Also had a couple of Liquorice Allsorts and a tiny bag of mini jazzles (white chocolate discs with hundreds and thousands on them).

I was feeling a bit better so I went into the living room, and played some World of Warcraft. Did Tillers, August Celestials and Shado-Pan dailies. Also did the first half of LFR (looking for raid) which went well and was fun. No wipes, unlike Johan’s attempt on his Monk about half an hour later 😛

Had some macaroni cheese (one of my favourite foods) for lunch then was going to start on Klaxxi dailies, when the pain started again. It feels just like gallstone pain- just under my right rib, radiating outwards up towards my shoulder, and towards the centre of my tummy. I’d already had 2 tramadol (being on computer gives more pain than lying in bed, but it’s worth it) so it was just heating penguins. Heat helps, but not as much as I really need. It’s not as bad as the worst of the relapse pain, but it’s still really intense and very much not fun.

What I eat doesn’t matter. I’ve been fine with chocolate and it’s been set off with the same chocolate. I’ve had it for just eating an apple. I’ve had it from rice and chicken. I’ve had it from yoghurt. It seems to be luck whether I get it or not after eating, and most times I’m not lucky. It was the same when I had gallstones when I was 18, and I lost a lot of weight before getting my gallbladder removed (when I went to A+E with the pain the doctors asked Sammie’s granddad if I was anorexic).

I need to eat, as not eating equals death and I don’t want that. I’m not in relapse, so I get hungry and eventually it hurts quite badly itself. Tomorrow I’m going to try grazing to see if that works better (I can’t tonight as the pain is still really bad, though not quite as bad as it was when it first started). I also need to find out when my own GP is available so that I can talk to her, both about the short term and long term eating issues, as I’ve not been eating properly for over a year now and I need help to not lose weight and maybe start putting some back on again.

Anyway, none of that was what I was wanting to blog about today. I was wanting to write about acceptance.

Acceptance can be hard for me, especially with ME. I have a lot of limitations imposed by the illness, and it’s so tempting to ignore them and push through and do ALL THE THINGS!!!1! but then I get payback and maybe a relapse. I’m fiercely independent so asking and accepting help from other people is really difficult. Then there’s having to accept help from people I don’t know very well (or at all at times) which is even harder.

There are things I have accepted. I accepted using the wheelchair as I realised it enabled me to do more. I’ve accepted that sometimes I can’t talk, and that typing is an okay, if slow, substitute. I’ve accepted that I need to take painkillers to manage the pain, and that doing so actually means I have a better quality of life, rather than just saving them for when it gets really bad. I’ve accepted that I do need help in most areas of daily living, and that needing that help doesn’t make me less of an adult or a person.

I’m struggling to accept I have severe ME. When I say that to Johan he tells me to use logic. When I’m in relapse it’s easy, as at that point I’m obviously severely ill, and feel it. It’s during the slightly better times that it’s hard to accept that how ill I am puts me in that category. I’m unable to walk, but earlier this year I was able to go out in my wheelchair to Newcastle and the MetroCentre, and I went to the prom. I’m only bed bound most of the time, not all of it. I’m able to play World of Warcraft. I can watch ponies. Sometimes I can even manage a fork or spoon. These feel like really massive things to me, but then I go look at the criteria and I’m almost at the bottom. There just seems to be a giant gulf between what I can do normally and what I can do during a relapse (which is pretty much nothing other than breathe sometimes).

I feel very lucky that I’m able to do so much, even if to other people it doesn’t seem that much at all. It’s hard to accept I’m as disabled as I am. I have accepted that I’m probably looking at years to get better rather than months, but I’m struggling to accept that I’ve not really started the getting better yet as even this year I’ve declined further, though at a slower rate than before.

It took a while for me to accept I was autistic, and that some of the things I’d originally put down to being stupid or lazy were actually caused by how my brain works. It’s gotten easier over the last few years, and now I’m trying to help Johan to accept the same things about himself. Things like struggling to tidy up being caused by executive functioning problems, taking certain things literally that weren’t intended that way and the reactions I got from that, even down to accepting that flapping was okay to do (I used to grab my hand if I caught myself doing it). Interface helped quite a lot with that, as did talking to other autistic adults.

I’ve accepted that it’s okay to be me. That one was probably the most important, and it’s taken me a long time to get to that point. I used to believe that I wasn’t good enough, I was too lazy, too stupid, too attention seeking, that I must be a liar because other people couldn’t see what I was experiencing. I now know that none of that is true- I may have times where I’m bit of all of them (though I try and keep lying to a minimum and most of it is white lies or lying by omission for what I feel are good reasons) but overall I’m not a bad person. I have my faults and I want to work on them, and I’ll never be perfect, but that’s okay.

I’ve also accepted that people genuinely like and even love me. When I was depressed I believed I was completely unlike-able (and evil, and ) and that people were only pretending to like me, or that I was deceiving them and that if they knew the real me they would hate me. Depression is evil as it changes the way you perceive the world so that you can see no good, like the glass shards in The Snow Queen. After I recovered it took a while for me to see and understand how it had lied to me, and learn that it wasn’t true. I still get moments where I’ll have those thoughts and beliefs, but they’re now short lived and easy to deal with, unlike when I was depressed.

I still have a lot of work to do on acceptance, but I’ve already come a long way from where I was a few years ago. Discovering I am autistic and recovering from depression (which are linked) helped a lot. Johan and my friends did a lot too, often by just being there for me and being themselves. I have some amazing friends and family, and that makes me feel very happy and lucky.

Danni

Night from Hell

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

Last night was hell. I tried sleeping through the cramps but they woke me up twice. I’m not eating again until I’ve seen a doctor as I can’t repeat that.

Communication is getting harder for me. Having to ask Johan to send even the simplest emails.

Funnily enough, my pain levels have been lower than normal (so long as I don’t eat). Been able to get away with just one tramadol at a time today.

Back is covered in spots but that’s probably due to sweating so much with the pain.

Blogging daily is hard work. Still trying, but longer posts will have to wait a while I think. Hopefully can see doctor soon so I can get things sorted.

Danni

Penguins and Ponies

Autism, Danni, M.E., My Little Pony: Friendship is Magic, NaBloPoMo, Penguins!, Physical Disability, Real Life

Still not doing great. Am completely bedbound, which sucks but it could be worse as I’m coping with sensory stuff other than touch okay. My bones in my upper leg are trying to cause pressure sores which is not fun, as I’m unable to move much, but I’m trying to prevent them. Tummy still rebelling against all food, but it looks like the kidney stuff was caused by lansoprazole as it’s clearing up and it hurts less. I have my penguins though. The heat from Penguin and Penelope helps my sore tummy/back more than my painkillers do, and they cheer me up in the process. I’ve been watching my colour changing candles today as well 🙂 I also watched the first two episodes of My Little Pony: Friendship is Magic season 3 today. It was awesome- scary and funny, with a great story, lovely songs and excellent animation. Definitely a great distraction, and I’m looking forward to the rest of the season now. I have downloaded some children’s books onto my Kindle app, and I’m hoping to be able to read them soon. They are easier than adult books and are good stories. The older ones are free on Kindle or Project Gutenburg and include some of my favourites. As holding a book is hell on my hands then reading on my tablet is better (plus I can increase the font size which helps with my blurred or double vision, that I have almost all the time). I don’t get on with audio books due to my auditory processing issues and terrible memory, so this is the best option for me. A shorter post today as I took an anti-nausea tablet earlier and it’s making me need to sleep now. Johan has a cold so I’m praying he doesn’t give it to me, and that he recovers quickly. He doesn’t sound like himself.

Danni

Being Ill is Hard Work

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

Trigger warning: talking about eating, bodily fluids and other areas of being ill

Living with a chronic illness is hard work, and exhausting. Unlike an acute illness, where in most cases you can take time out from normal life and spend time just recovering, with a chronic illness you have to try and live life around the illness.

With M.E overexertion causes payback, which is highly unpleasant (increase in symptoms such as pain, nausea and brain fog, and for me it can cause paralysis, extra spasms and severe light and noise sensitivity). Trying to balance between doing as much as possible, to enjoy life as far as I can, without it tipping into doing too much is a delicate balance, and I don’t always get it right. A common technique used by patients with M.E is pacing, which requires figuring out how much activity you can do in a day and how much rest you need. Even trying to monitor my rest and activity levels was doing too much for me, so I can’t do proper pacing. Instead I listen to my body, which is hard as poor body awareness is common in autism and affects me, but I try.

Most of the time I’m not actively thinking about being ill or trying to get better. Distracting myself from the symptoms and the illness is very important to me, and finding ways I can do that without overdoing it is worth the effort. When I’m able to get into the living room in my wheelchair and I can manage with sensory input okay, playing World of Warcraft is my go-to distraction, as the skills it requires are easy for me, I can find things to do in game even when very brain foggy, and I like being able to melt faces or heal people, even if only in game. When I’m stuck in bed but not really ill (for me) then I use my laptop to go on Facebook or maybe watch some easy TV shows on Netflix. When I’m really ill, then my penguins are often my only distraction, along with the occasional glimpses at Twitter on my tablet. Those are hard times.

There’s lots of practical things that being ill makes more difficult. I can’t walk or mobilise independently at all, other than rolling in bed (and even that disappears when I relapse). Sitting up for more than a couple of minutes is a bad idea, which makes lots of things difficult. I can’t make it to the toilet most of the time and it’s not supportive enough for me, so I try and use a commode next to my bed. Each time, I have to figure out if I’m well enough to use it, if I’m well enough to transfer independently or not, if I’m well enough to manage wiping and my clothing. As I’m fiercely independent and don’t like asking for help, I sometimes get this wrong. If I can’t transfer independently, then I fall. If I can’t sit up long enough, I faint. In both cases Johan needs to pick me up and get me back into bed, and being hauled around is quite painful as I can’t help much (or at all if I’m unconscious).

The alternative to the commode is the bedpan. There are downsides to that as well. I need Johan to fetch it for me, and help me get on it. I find it harder to use than the commode, so sometimes can be on it a very long time. As I have no strength to hold myself up, I normally end up sitting in my own waste in it, and need cleaning up by Johan afterwards.  It’s exhausting, painful and embarrassing, but peeing isn’t optional (and if I can’t pee, that causes its own problems, like possibly needing to go into hospital).

Eating while ill is also more difficult. I’m constantly nauseous, so I have to work out whether I’m able to eat at all, if I can what foods I can manage, what I fancy eating, whether I can chew properly, how well I can swallow. At the moment eating also causes severe tummy pain (feels like gallstone attacks but my gallbladder was removed 9 years ago so it’s probably not that) so I have to consider how calorie dense it is, as I won’t be able to manage much. Then I have to consider whether I can manage a spoon or fork, whether I can manage finger food, or whether I need Johan to feed me. Lots of thought has to go into the simplest of things. I do have anti-nausea tablets but they make me sleep, so I have to decide when it’s worth taking them or not.

That’s just a couple of areas where being ill make things harder. The planning that needs to go into the smallest things is tiring, and the cost of that has to be taken into account before even planning. A trip out to the shop requires about half an hour of preparation just to get out the door, due to the amount of stuff I need, sorting the wheelchair, helping me with outdoor clothing, and then getting the wheelchair out of the flat. Trips out are infrequent (and not happening at all at the moment) as they require lots of energy and brain power to plan, something which I’m rather lacking right now.

The consequences of not taking the illness into account and working around it are horrendous. Either payback, or if it’s been particularly bad or long lasting, a relapse. I’ve yet to fully recover from any relapse- every one has resulted in a loss of functioning that I haven’t got back. My M.E. was progressive anyway until this year, where it seemed to stabilise a bit apart from the relapses. A relapse is living hell- pain levels that are higher than I could have imagined beforehand (I’ve given birth and had gallstones), complete intolerance to light, sound, and often touch, often being unable to speak, and at the worst times completely paralysed, unable to communicate and hallucinating due to the pain. Some M.E patients are like that all the time, and I pray that they get some relief as I struggled with it for even a few weeks.

Of course, me being this ill and disabled means that Johan has to look after me, so a lot of the hard work goes onto him. I have to rely on him to manage my medication as my brain fog means it’s dangerous (I can’t remember if I’ve taken them or not, so am at risk of taking them again), plus I often can’t hold the tablets so he has to put them in my mouth for me. He has to deal with my toileting needs, no matter how I’m doing it. He’s the one who organises my food when we’ve figured out what I’m going to attempt to eat, who reminds me that I have anti-nausea tablets so I can consider taking them. He helps sorts my pillows and quilt out so I’m as comfortable as possible. He heats up my penguins for me to help with the pain. He holds my hand when I can’t cope with hugs. He spends time just sitting with me when I need company but can’t manage conversation. He repeats things multiple times because I lose track of what he’s saying. He contacts the doctors and everyone for me when I need them. He’s on call 24 hours a day, 7 days a week as neither of us can predict when I’ll need something. It’s as hard for him as it is for me.