Category: Physical Disability

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

How Much Do You Spend on Grocery Shopping?

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

Recently, Johan and I have been discussing articles on the Daily Mail (we read it for humour purposes only) and a funny parody on the Independent websites about certain middle class households complaining that they can’t manage on £100,000 a year incomes without their child benefit (I don’t have the spoons to hunt for the articles today, unfortunately). Now I disagree with the child benefit changes because it’s going to cost more than it remaining universal due to administration costs, it’s unfair for those families with only one person working and earning just over the limit, and the fact it can increase problems of financial abuse against the main child carer in some families (if one parent who works withholds money from the parent caring for the children, the child benefit may be all that parent has to buy food and clothe them. This can happen in any income family).

The funniest bit to use was where people were complaining that they couldn’t manage only spending £1000 a month on food (for a family of 5, I think). Now we consider ourselves very lucky, in that the level of benefits we get covers our needs. As I used to have to manage on a budget of £80 a week for two people, I actually feel rich having my DLA (though my disability does bring extra costs with it). As neither of us can work (I’m too ill and Johan is saving the state thousands by caring for me rather than me living in a care home) we appreciate having enough money for little luxuries, as we have no other way of getting income. We’re both very grateful for what we get and both of us want to pay back into the system as soon as we’re able.

One of our bigger luxuries is having a food budget of £100 a fortnight. On that we can afford to eat very well, get nice food in, and can get what we like inclnduding treats. Due to Johan’s difficulties with executive function we need to get a lot of preprepared and easy to cook food, which can be more expensive. We’re also both quite fussy, which reduces our options quite a bit. Luckily, we can easily afford this with such a large budget, and often come well under so can get takeaways as a treat as well. It also helps as my diet can change drastically without warning- if I relapse I can no longer chew and need liquid or pureed foods (which we get from a specialist online shop). When that happens we can afford it without having to worry.

Now this is quite a large budget and if we needed to reduce our outgoings for whatever reason, it would be one of the first things that would be cut. Last year we managed fine on a food budget of £50 a fortnight, and if necessary we could cut it down further (when I lived alone I could manage on a food budget of £30 a month, even with my fussiness and problems with food preparation, and it was healthy food, not just noodles).

The idea that people struggle with a budget of £1000 a month for 5 people seems strange to us. Though the budget works out about the same per person as ours (Edit- no it doesn’t, it’s about double. Danni can’t do maths), food actually gets cheaper when bought in bulk. I mentioned earlier that we often struggle to spend the entire budget. We have a pretty full freezer and cupboards even at the end of the fortnight (we buy a bit less fridge food as with our fussiness and my eating problems due to illness it might not get eaten before it goes off) and if necessaary we could manage a lot longer eating from the cupboards and freezer (and sometimes we even skip a full shop as we have plenty in and just spend £10-20 on fresh stuff that fortnight).

What must they be eating? We often get the luxury brands of food, and more than we need so we have plenty of backups. How much wastage do they have? If they’re really struggling, then I’m sure they could cut down in other areas- we live on quite a bit lower than the average wage including all benefits (including housing, council tax and disability) and are comfortable and don’t go without much that we want (though maybe our wants are less than theirs?). And I’m sure they don’t need to buy wheelchairs, specialist equipment or keep the house as warm due to disability.

Now I know there are a lot of families that really are struggling with the costs of living. Food and energy prices are going up, and incomes aren’t so what used to be manageable isn’t now. This isn’t about them. It’s specifically about those families in the Daily Mail going “oh, woe is me, we can’t manage on £100,000 a year”. They can reduce their lifestyle to match their income. Lots can’t (and need help, but that’s for another blog post).

(On the health front, my lovely GP came out and is organising tests, a scan, and referrals to the OT and a dietician. No immediate solution other than to continue drinking stuff with calories in it, but I’m coping with the pain enough to manage to eat a bit once today so I’ll be okay until things get sorted.)

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.