Category: Important Stuff

Danni

I Love The NHS

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

I love our NHS. Having a national health service that provides services based on need, rather than ability to pay is one of the things that makes the UK a great country. I know that if I need to see a doctor, a nurse, a specialist, or go into hospital I don’t have to worry about the cost. Some people have to pay set charges for prescriptions and dental care, but because I’m on a low income benefit (and can’t get out by myself) I don’t even have to pay for them.

The NHS is not perfect. Waiting times can be a bit long, there aren’t enough nurses in hospitals, some of the targets and paperwork mean that the professionals can’t do their jobs as effectively. Some places are just not up to a reasonable standard and need to improve. Individual doctors or other professionals may not be good enough, or have other problems. My solution to that would be to spend more money in the areas that matter and listen to the doctors, nurses and other healthcare professionals on what changes are needed, and make the sure the money is there. The government’s solution is to privatise it, bit by bit.

I’ve mostly had very good experiences in the NHS. My current GP is excellent, and although she may not know exactly how to help me (she’s admitted she knows very little about ME, especially severe ME) she’s willing to learn. She asks me what I would like her to do, and is quite happy to arrange anything that is reasonable (contacting my specialist, referral to an OT and a dietician). Most of my previous GPs have been excellent as well, which I’m very grateful for.

Most nurses have also done their best for me, and have been helpful and caring while providing whatever treatment I’ve needed. They may not always get it right, but nearly all of them try. The same with other healthcare professionals- most really want to help me, treat me well and care. My specialists have always been good at their jobs, and I’ve been reassured that they can help me, even with something as complex as ME.

I’m going to especially mention ambulance people here (I get confuzzled by the different types). Every single ambulance person, without fail, has been brilliant. They’ve always done their best to make sure I’m comfortable, helped me whenever I’ve needed them, and reassured me on many occasions that I’d done the right thing having them come out. I know they do a really hard job and yet they still care, can joke with me and treat me like a human being.

I’m not the easiest patient to treat. My autism makes communicating difficult, and can make it hard for me to give the information that is needed to help me. I often have symptoms that I can’t always pin down. I don’t react to pain or other things the way that people expect. I have often had strange reactions to medication, sometimes after taking them for a while. ME is a complicated illness with lots of different symptoms are varying severity and also makes the communication difficulties I already had worse. Nearly all the professionals I’ve dealt with have tried to work around these, and still treated me like any other patient.

I have had some bad experiences, and some professionals that haven’t acted as they should have. There have been some events that just shouldn’t have occurred. However, this is not a failing of the NHS as a whole. Mental health services in particular need to improve. This isn’t justification for privatisation however.

I’m scared for the future. Right now, I know that if I need to see my GP, she’ll come to my home if I need her to and she’ll do her best. If I need to go into hospital, I can do so and if needed a brilliant ambulance service will take me there. I don’t have to worry about my ability to pay at all. With the NHS being slowly privatised, that may not be the case in the future. The NHS needs more money, not cuts. It shouldn’t be run as a business.

I’m lucky. The NHS has saved my life and the people working within it that treat me are doing their best to help me be as well as is possible. I’m not sure that will be the case in the future.

 

(Health update- I ate a yoghurt and a banana at bit earlier as the hunger was getting to me, and I felt dizzy and weak from low blood sugar. I got severe indigestion and nausea, but no gallstone like pain. That was still the case after having some Revels as well. I think my body is trolling me. I’m hoping that the gallstone like pain has gone completely now, but will see how things are tomorrow as I’ve had an anti nausea tablet and it’s making me very sleepy.)

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

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.

Danni

Sexual Identity

Danni, Gaming, Important Stuff, NaBloPoMo, Real Life, World of Warcraft

I’ve known since I was 15 (when I first started experiencing sexual feelings) that I am bisexual. I’m attracted to females just as much as males. (I’m possibly pansexual, but as I’ve yet to knowingly meet someone who identifies as something other than male or female and be attracted to them, I can’t be certain yet.) This seemed perfectly normal to me, even though I was aware that hetrosexuality was the most prevelant. All my partners have been male, but that is mostly due to not knowing how to find a female partner (all the females I’ve been attracted to have been hetrosexual, taken or both) and I know I’m happy being monogamous so when I’ve been with a partner I’ve not been looking. Now of course I’m married to Johan.

I’m aware that most people will think I’m straight, as my bisexuality is not something I go talking about much and I have a male partner (Johan is straight). It’s not that I’m ashamed of it, it’s just not something that tends to come up in conversation. I’m also aware that I tend to think people are bisexual by default, unless told otherwise. I think that’s because I use myself as a starting point and think most people are like me, even though that’s not the case.

I don’t understand homophobia. Disliking people (or worse) because of who they’re attracted to just doesn’t make any sense to me. I know that I was probably born bi (I didn’t experience any sexual attraction before I was 15 but I do know I slightly preferred looking at images of women than men before then, which is still the case today) and hating people for who they are just seems wrong to me. This is especially the case as I’m a Christian, where the most important message I know of is to love your neighbour, and there’s no exception there for people different to you. I also dislike that many Christian churches are against gay rights (this was a major reason why I did not convert to Catholicism).

I’ve not been active in the LGBT community, though I am hoping to get more involved when I’m doing better. That I’ve only been able to marry Johan because he’s male and I’m female is wrong (and although civil partnerships are better than nothing, it’s not the same as marriage and can cause major issues if a transgender person changes their sex). That people are persecuted and even killed for something they can’t help is very wrong.

I’ve probably avoided any bullying or similar over my sexuality only because it’s not well known, especially when I was younger. I’ve noticed that insults based on sexuality are less prevalent here than in America (especially noticeable when playing World of Warcraft- you can’t spend more than a couple of minutes in trade chat on the US realms without some insults based on sexuality being thrown around, whereas on the EU realms it’s very rare). It upsets me that people use sexuality to insult people and to bully people.

I feel marriage should be available to any consenting adults. I don’t even think it should necessarily be restricted to two adults. If all parties are happy and give consent, then they should be able to marry. I think it will take a lot longer to open marriage up to more than two people, and possibly there are less people who are wanting it (though I could be wrong on that) but I’m hoping that marriage will eventually be available to all who want it. I also hope that the institutional homophobia that occurs in religions and other places will be seen as unacceptable and given a lot less power in the future.

Being bisexual doesn’t make me any less of a person. It doesn’t make me any less of a Christian. That some people believe that makes me sad.

(I’ve not been doing very well today as I’m still having tummy issues and my brain fog is bad, so if this post makes no sense, is overly repetitive, or similar that is why. I’m happy to receive any corrections that are needed.)

Danni

Rest in Peace, Emily Collingridge

Danni, Important Stuff, M.E., Physical Disability

In Memory of Emily CollingridgeToday was the funeral of Emily Collingridge, a young woman who died from M.E earlier this year. I did not know her personally. but her book (written while she was severely ill) has made a massive difference to my life. My thoughts and prayers are with her family and friends.

About Emily: http://www.severeme.info/about-emily.html

Emily’s book: Severe ME/CFS: A Guide to Living

A Guardian article about Emily: http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome

ME Association’s page about Emily’s Funeral, including her mother Jane’s memories of Emily: http://www.meassociation.org.uk/?p=13356