Category: Mental Health

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

Politics and Bad News

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

Strong emotions (both positive and negative) are exhausting for me. By exhausting, I mean I get very weak, I get worse brain fog, and I need to rest immediately. Too much means I get M.E payback. As part of being autistic, I experience most emotions very strongly, and it can be harder for me to process them.

When I realised that getting emotional was affecting my health, I decided to do something about it. Negative emotions affect me more than positive, especially sadness, anger and anxiety. I used to follow the news constantly- watching 24 hour news broadcasts, being on news websites, following news on Twitter and Facebook. Since bad news makes me feel bad emotions, I started limiting how much I saw. I don’t ignore it completely, but I try to only read headlines and not get as involved as I used to. This was hard as I care about what I read, but it has helped.

Due to our current government, most political discussions are also full of bad news (to be fair, this was also the case with the previous government). I used to be very interested in politics, and was quite active for a while. Political discussions are tiring even if they aren’t emotional, as they require remembering facts, being able to explain opinions clearly, and being able to understand what the other person/people are saying and remember it long enough to reply. All things that are difficult to impossible for me now. So I’m mostly staying out of politics and political things. This is difficult as I still have strong feelings, especially regarding disability rights, and welfare benefits, but if I get too involved it makes me ill.

Many of my friends, especially on Twitter, are very active politically. A lot of them are also disabled, and quite a lot are also ill with fatigue problems. I admire them so much for what they’re able to do, and so wish I could help them out. I can do the very basics- sign petitions, retweet stuff, very occasionally blog about things, but anything more and my health has to come first. It makes me feel guilty but I’m trying to get over that.

None of this is because I don’t care. It’s because I care too much, that it makes me feel such strong emotions, that I have to step back and let other people deal with things. When I improve I really want to help out, especially for disability rights and on benefit issues (as I’m reliant on benefits myself, and exceptionally grateful for them) but until then I have to just vaguely watch and try not to feel too much. It’s hard trying to not care when hearing about natural disasters or someone who can’t afford food because their benefits have been stopped, but if I care too much I get ill, and that won’t help anyone either.

What I do need to learn to do is be more clear that I can’t deal with bad news and politics and stuff, so when people direct it at me they understand why I don’t immediately do what they ask. I’m pretty sure the Spoonies especially understand that if I don’t respond to requests to retweet this, read that, it’s not because I don’t care, but some of those on Facebook especially can be posting all sorts of causes on my wall, some of which can be quite triggering to me. I’ve had to block the Causes app on Facebook which was hard, as it’s actually pretty good.

I’d never ask anyone to change their own tweets or Facebook posts for me. That would be silly. What I do need to ask is that there’s less sent directly to me (mentions or posting on my wall). If I ignore something or remove something, it’s not because I don’t care, but because I’m protecting my own health. When I’m feeling up to it, I might get involved in discussions that interest me, but I need to be in control of them and not be dragged into them (which has happened a few times, including in World of Warcraft which should be an escape from it all really).

There is an exception- if you’re a friend and want to rant at me, feel free 🙂 I can tell friends when I’m not up to conversations, and I like using energy to support my friends. I’ve had so much support from my friends recently that I’d love to be even half as supportive back. It makes such a difference to have someone understand what you’re going through.

Danni

Autistics Speaking Day: When Other People Don’t Get It

Autism, Danni, Important Stuff, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

This is the third year I’ve participated in Autistics Speaking Day. My previous posts are here (2011) and here (2010) and the main website is at http://autisticsspeakingday.blogspot.co.uk/.

Being autistic causes me a lot of difficulties, but most of them aren’t related to being autistic itself; instead, they’re because other people just don’t get it. When I’m verbal (which is now a sometimes thing rather than a normally thing) I normally speak rather fluently and have a large vocabulary, so people assume that I can talk well all the time. They also assume that I’m able to understand things the way they can, and can respond the way they would. When this doesn’t happen (because I’m autistic and have M.E. and my verbal communication is variable) they assume this is because I don’t want to, rather than because I can’t.

I make a point of telling people (or having Johan tell people) who need to know (carers, social workers, doctors, nurses, them sort of people) that I have communication difficulties and that sometimes I may not be able to understand or respond in a typical way. I tell them that this is because I’m autistic and that M.E. complicates it. Some people understand, and know that it means if I’m not responding normally, or need to type, or need to be left alone as I can’t cope that it’s okay, and give me extra time or ask Johan or reword questions. Those people (often carers, and a couple of nurses) are awesome and we likes them very much 🙂 Some others don’t understand initially, but then ask questions and then figure it out. Those people are also awesome, as they’re willing to take the time to learn. Some of those people have told me it’s helped them in other situations, so it’s good for all of us. We likes them very much 🙂

Then there’s the people who for whatever reason, decide they know better. When I have difficulties with communicating (or dealing with sensory stuff, or understanding things) instead of remembering that we’ve told them this can happen, or asking us questions to sort things out, they assume I’m doing it on purpose, or it’s because of psychological reasons and that yelling at me or belittling me will help. Those people we don’t like very much. Some of them have apologised when either Johan or I have been able to explain what happened, but others (often but not always doctors) are certain we’re mistaken and they have it right. They make many problems.

So, what can people do? If you’re told that someone is autistic, or they have communication difficulties (even if only occasionally), believe them. If you don’t understand how you can help them, ask. Autistic people and their carers will often have developed strategies to deal with their difficulties, and will often be able to tell you how best to communicate. If they ask to tell you at another time, or to get back to you, accept that and don’t push it, because a lot of autistic people have anxiety or other issues that mean they might struggle with answering questions spontaneously, and being pushed can make their anxiety or their communication issues worse.

Also, don’t make assumptions on ability based on how they are at any one time. Both Johan and I find that our ability to do things varies from day to day and from hour to hour, and that something we might accomplish with ease at one time may be very difficult or impossible at another time. This is quite normal for autistic people, and doesn’t mean they’ve “regressed” or that they’re not trying hard enough or are lazy or anything like that. That can go for pretty much any activity, including speaking and communicating.

For me personally, I try to communicate verbally when I am able to. If I can’t or it’s a struggle, then I switch to typing (either on my tablet, or on my iPhone). Sometimes it can take me a long time to respond to a question, or I may forget what I’m saying/typing in the middle of it and get very lost. Sometimes I need the person speaking to repeat what they’ve said as I’ve lost track or forgotten. If my M.E, is playing up badly and I can’t cope with light at all (even with sunglasses) then I might not be able to communicate other than by making gestures or possibly spelling words out on Johan’s hand with my finger. There are times when I can’t understand anything that anyone is saying, and I get very confused and scared. If you’re trying to communicate with me, then please accept it might not go well at all times, but I really appreciate it when you try to make it easier for me.

To those of you who make an effort to understand those of us who have difficulties with communicating (or any other task for that matter), thank you.

(I’m having some severe cognitive issues at the moment, caused by the combination of autism and severe M.E, so if there are any mistakes in this blog post please let me know and I’ll correct them. Thank you 🙂 )

Danni

Silly Danni

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

Danni as a PenguinI just wrote a long blog post about World of Warcraft: Mists of Pandaria. Then I deleted it instead of saving it. As I’m on the Android app, rather than the website, that means it’s gone (there was a delete confirmation, but I mixed them up and pressed yes rather than no). I’m making lots of these types of mistakes recently. Bah. I might rewrite it, I might not. The summary of it is I’m really enjoying it, and so happy I can play it and it’s something I can do with Johan and my guild.

I’m having a lot of cognitive problems. It seems every time I relapse, I lose more cognitive ability, and up to now have not regained any of it. This was the worst one. It’s a strange thing as it’s inconsistent and unreliable. I’ve managed to read a couple of nonfiction books, but I can’t remember much about them. I can’t concentrate on a television show, so if I have it on at all it’s basically reality television or old quiz shows. I want to watch Doctor Who but I can’t follow the plot so get frustrated. I’ve been attempting my DLA form, but it’s been making me worse cognitively and I’m scared it’s going to lead to another relapse so I’ve asked someone who is good at forms to help me next week. Johan is having to take over the stuff I normally manage, like online food shopping. He’s noticed I’m not able to concentrate on a conversation now.

My memory is shot to pieces. I get very confused, and that makes me scared. Most of the time I have no clue what day or time it is, even though I check constantly. I’m not even keeping up with Twitter which is normally easy for me. Yet I can manage playing WoW. It feels really strange that it’s so inconsistent. It might be because they require different skills, and the ones I use for playing WoW aren’t as badly affected as those I use for conversations or managing shopping. This may also be part of the mix of autism and M.E, as being able to use one skill but unable to use another seemingly related but different skill is common in autism, and for me has always been an issue, and the M.E is making it worse by affecting pretty much everything.

It is scary to feel stupid, especially when intelligence was previously one of my strengths. When the CFS team were here I told them I was having to ask Johan for really simple things, like what’s 5 +7, as I can’t figure it out myself. I’ve got a qualification in AS Maths – this used to be easy for me. There’s not much the CFS team can really do- if it continues to be a major issue they can do testing, but they’re worried that’ll be too exhausting, since even short conversations can take everything out of me. The physiotherapist has written a really supportive letter for my DLA claim though, which should back up what I’m saying. It’s hard seeing it down on paper though just how disabled I really am- even though I live it, and try to blog about it, to see someone else writing about how I require Johan to support me in everything, how I’ve been bedbound much of the time- it’s confirmation and it’s scary.

My mental health isn’t great at the moment. I’m not depressed, but emotionally I’m not coping as well as I can be, and I’m getting a lot of flashbacks from things from the past that are very scary. Overall my mood isn’t too bad, and I’m still mostly positive and happy, but it does get me down, especially the confusion and the flashbacks. Late night/early morning still tends to be my best times, though Johan does need to sleep and I really want to try and be on a decent sleeping pattern. I can’t force it though.

I now have the care call system set up. They tried to do the annual check and discovered it wasn’t connected, though we’ve been paying for it since we moved in. There were lots of problems, and the beeps and the loudness of it made me feel very ill while they were trying to sort it out, and I ended up needing an anti nausea tablet that through my sleeping pattern off completely. It’s sorted now but we do need to ask them things, like what exactly do we use it for (we’re autistic, so things that may be obvious to other people aren’t necessarily to us and we’d feel better if we’re told) and can they make the random courtesy calls less random please, as they make me panic. We also have some information we think it’s important they have, like I can be non-verbal. It is good though as it means we’ll both feel better if Johan goes out as if something happens I can press the button and they can contact an ambulance or whatever for me. It’s also connected to the fire alarm, so if it goes off they can contact the fire brigade. It also means if something happens to Johan, I can use it to summon help.

Good things though- I can play World of Warcraft. I’m looking forward to Halloween, where I’m going to be a fairy penguin princess 🙂 I’m wanting to see fireworks- either the official display if I’m well enough to go out, or watching from Johan’s window if I’m not (he’s got an amazing view right across the valley from his window- I get my tree from mine :P). I have a penguin onesie- completely impractical but I love it (and even saw the CFS team wearing it). I can eat solid food. I can sometimes use my fork. My friend Vivacia Dreams sent me an awesome penguin hat. I’m hoping to have Sanabitur Anima visit me soon. I can read non fiction. I’m not in relapse. I’m very very lucky 🙂