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Goodbye “Carers”

Autism, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life 3 Responses »

Nov 252011

We’ve cancelled all the carers. This morning I was actually looking forward to the carer coming, as the rota said it was lovely Icelandic carer and she’s awesome. Unfortunately it wasn’t her- the carer who made me really ill on Saturday turned up instead, an hour late. We hadn’t been told that we were getting her, or we would have cancelled in advance, because she makes both of us anxious, doesn’t read or follow the care plan, and doesn’t do anything because I can’t have her touch me since she made me so ill and as she won’t read the care care plan never even stayed long enough to be asked to do some basic housework.

This was the last straw. We’ve been having problems with the agency (DH Healthcare) for months, and things were only getting worse. There is no consistency- the lowest amount of different carers I’ve had is 7 in a week (we got 13 calls a week). Back when I used to have two carers in the evening, it wouldn’t be unusual to have 15 different carers. I’m autistic, so find new people difficult to deal with. They would show up randomly, or not show up at all. Carers on the rota would be replaced with someone randomly. We were never informed of any changes. We had to ban some carers because they were so bad they’d make me ill, and they’d still turn up on the rota so we’d have to cancel the call. The carers that were good and we liked we were seeing less and less of. The agency refused to tell new carers anything about me before arriving, which meant they expected two people with communication problems to do their work for them. Some of the carers were so rough they’d cause me to scream in pain. Some wouldn’t follow any instructions. Some would talk to me in such a way it would make me absolutely terrified. A lot of the carers would rush- my calls were 45 minutes in the morning, 30 minutes for a normal night call and an hour for a bath call specifically so I could take things slowly and rest when I needed to. Most of the carers would not read the care plan, so wouldn’t follow it. There was even one carer who when told what was on the care plan, actually refused to follow it, as she “didn’t do domestic” (my care plan included some basic housework, as it was to try and help Johan out as well). A lot of the carers would not take my communication difficulties into account, even when told about them- I cannot cope with open questions, but they’d persist in asking them. Quite a few would blatantly lie- to us, the agency and on the record sheet they are supposed to fill in.

There were some good carers. They’d listen to us, take things slowly, treat us as equals rather than talk down to us, try and help me maintain my dignity while helping me. They’d use their initiative- if there were dishes to be done, they’d do them without having to be asked to. We’re going to miss those carers. Unfortunately I’ve seen very little of them recently, as they very rarely appeared on my rota.

We’ve tried complaining. We’ve had lots of meetings to try and sort things out, and they never were. Johan has also been struggling recently, so hasn’t been able to complain every time something went wrong (which would have meant him having to complain about 5 times a week). I’ve tried telling my social worker, but he doesn’t seem to actually care.

The care agency mostly caters for older people. I am scared for the other people they are meant to be providing care for, as I’m a young person who isn’t afraid to complain, and there have been a lot of problems. I also have Johan to look after me, especially when they’ve just not turned up. They couldn’t meet my needs, but refused to say this and continued to send out people who were not able to deal with them. In the last week there’s been lots on the news about how home care for older people breaches their human rights (for example http://www.bbc.co.uk/news/health-15836500), and I wasn’t surprised because I’ve experienced some of it for myself.

I know that my needs are quite specific, but most of them aren’t too hard for anyone to implement. I need people who can be quiet when talking to me and working, and who don’t wear strong perfume. I need people to understand that I do have communication issues, so I’d rather they ask specific questions for what I want doing (all listed on the care plan, and I even had a list with just those printed for them). I need people to understand that because my M.E. is variable, there will be days where I’ll want more personal care, and other days when I’m too ill for any, so maybe they could go tidy the kitchen a bit instead. If for some reason I can’t cope with them being here (sometimes when I’m very ill I can’t cope with any extra noise or movement) they need to leave as soon as we tell them.

The biggest things I need though are consistency. I need a low number of total carers, so we can teach them our ways. I need them to come when they say they’re going to (at the same times each week), and to tell us if there’s going to be any changes. I also need them not to come early, as I find that causes me to panic (though they can be up to an hour late, I’d like to be told if it’ll be more than half an hour, though).

We’re currently trying to swap to direct payments, and although we were initially after a personal assistant, we’ve now realised that just going with a different care agency may work instead. My care plan is also out of date, as it was written up in May, when I was able to do a lot more for myself. Most of my personal care Johan can do, though he struggles a bit with washing my hair and plaiting (he’s gotten good at brushing it now I have a tangle teezer) and isn’t confident with the idea of brushing my teeth. He really needs help with housework though, and that’s one of the things my care package is meant to help with, so he can concentrate on looking after me.

This has got a bit long, so I’m going to leave it there, but I’m relieved that I don’t have to worry about the carers any more. Hopefully things will start to improve soon.

Heh.

Danni, Mental Health, NaBloPoMo, Physical Disability 1 Response »

Nov 132011

I’m not coping at the moment. A combination of toothache and panic over things, and feeling like I’m useless. I’m aware my brain is being illogical, I just don’t know how to deal with it.

New antisickness tablets put me to sleep. I guess that’s one way of dealing with the nausea, but it’s not exactly ideal. Messed up sleep is now completely messed up.

Staying Positive

Danni, M.E., Mental Health, Physical Disability, Real Life Comments Off

Oct 142011

At the moment, I am a generally positive person. This may not come across much in my blog posts, mostly because I’m using them to record how my M.E. is treating me, and at the moment it’s making me rather ill. I have been talking to friends, and one said she felt guilty as she’s improving while I’ve been getting worse. The last thing I want is to make people feel guilty about getting better, just because I’m not. So here’s a list of the positive things in my life at the moment.

I’ve not been depressed since early 2010. This is the big one- although I do get periods of low mood, and other negative emotions such as anger and things, they are always within the bounds of normal (whatever normal is) and I can normally cheer myself up. Also, if I’m having a particularly bad day, painkillers normally fix it as it’s normally caused by pain.

Despite being very ill, I’m not completely bedbound. Most days I can get out of bed, even if it’s just to use the commode or spend 10 minutes on my computer at the other side of the room. It’s only on very bad days when I can’t manage getting out of bed at all, and faint if I try and use the commode.

It’s rare for me to be completely bored. My main past time is just reading Twitter (I respond when I can, but I’m not always well enough for that). It takes very little energy and concentration, as it doesn’t matter too much if I miss or forget a tweet. If I can’t do that, then I’ll look at the penguin pictures on the wall, and when I’m at my worst and wearing eye mask and ear defenders, my imagination can normally keep me entertained.

I can take pleasure in other people’s achievements. I may not be doing much myself, but I am genuinely happy to hear about other people doing well, whether they have M.E. and improve a bit, or passing exams, or just doing something cool. Hearing about that sort of thing makes my day a lot brighter.

I have a lot of friends, who accept me for who I am. Okay, so most of them are online, and I’m terrible at keeping in touch with them, but when I am well enough to do so, they help make me feel good about myself.

I have a really good medical team. My GP is excellent- understands M.E., treats me well, and is willing to do whatever he can to help me. My consultant is also good, and wanted to make sure that there was nothing treatable causing my symptoms. The CFS clinic are doing graded activity therapy, not CBT and graded exercise therapy which would probably make me worse. They also take into account my autism when working with me (so I may not get enough proper rest, as I don’t find it restful, but they understand that I do find my Twitter reading as low enough activity to count as rest).

I have an amazing, supportive husband, who cares for me very well. He may be going through a bad time at the moment, but I’m still getting fed, have enough to drink, and get to the toilet when I’m well enough. He also empties the commode and my sick bucket when it needs it.

I have the most beautiful daughter in the universe. Enough said.

I have painkillers that actually help. I’m lucky that I don’t suffer from nerve pain (which is difficult to treat) and only have muscle and joint pain, as well as some headaches and a sore throat. The worst of my pain responds to tramadol, which while it doesn’t get rid of it completely, does make it bearable so I can concentrate on other things.

I don’t have insomnia. I may have sleep reversal at the moment, but when I am sleepy, it doesn’t take that long for me to drop off. I was surprised at how quickly I got back to sleeping naturally after coming off quetiapine, but I’m very grateful for it.

I’m not having any financial problems. I get all the benefits I’m entitled to, and one of the advantages of being nearly completely housebound is I don’t have that much to spend it on :p I buy the disability equipment I need when I need it, and also have enough left over for the odd book, or for some small treats such as bath things or chocolate. When I am well enough, I have enough money to go out, and can save a little bit so hopefully we’ll be able to go on holiday soon.

There are probably other important things that I’ve forgotten, but overall I am enjoying life, even if it’s not exactly what I want it to be.

Ambulances and Doctors

Danni, M.E., Mental Health, Real Life, World of Warcraft Comments Off

Oct 142011

Saturday night I started experiencing some strange chest pain. It felt like someone was stabbing me every time I breathed. As the pain continued to get worse, my normal dose of tramadol wasn’t touching it, and because it was unusual for me, we called an ambulance (we would have called NHS Direct but as it was chest pain they would have just called an ambulance anyway).

The ambulance men were brilliant. I’ve no clue what they look like, as I was having a bad day, was very noise and light intolerant, and was wearing my eye mask and ear defenders (this is also why I’m calling them ambulance men, as I don’t know if they were paramedics or technicians or one of each). They understood why we called them, and also realised that going into hospital would not be a good idea unless necessary, so they performed all the tests to rule out anything serious. They asked questions about my M.E. and autism, reassured me as appropriate (both that I was okay and that it was right to call them out) and also cracked a few jokes (then told me not to laugh as it made the pain worse).

Once they’d done everything they could, they called the urgent care team (who are nurses) to ask them to come out to see if they could figure out what it was and how to deal with it. They checked to make sure I didn’t have a chest infection or anything like that, and concluded I’d probably pulled a muscle in my chest at some point, and told me to take more tramadol (double my prescribed dose) as they couldn’t prescribe anything stronger themselves. All very useful, and the extra tramadol knocked me out so I was at least able to sleep through the pain.

Johan coped remarkably well on Saturday night, but unfortunately he wasn’t doing overly good mentally. Sunday I spent a lot of time trying to reassure him, and he was unable to distract himself as he normally does. On Monday, I went with him to the MetroCentre as mentioned in the previous post, even though I wasn’t well enough, because he wanted to go and couldn’t do it alone.

Tuesday we both saw the doctor. He swapped my prochlorperaine to a form that dissolves next to the gum, as my nausea and vomiting got so bad I couldn’t keep my tablets down. It works well, except on days where I wake up with severe nausea and end up vomiting before I get the chance to take it. I’ve also been given permission to double my tramadol as I need to, which is useful.

For Johan, he took him off sertraline as the side effects weren’t helping things, and put him on mirtazapine instead. Previously Johan has said he didn’t want to go on it because of the weight gain, but he didn’t protest, and I wasn’t going to as if any medication is going to help him, that one will. He also referred him to the crisis team, despite us not being too happy about it, because of how quickly he’d deteriorated and his risk of harming himself.

While in the chemist waiting for our prescriptions, I picked up a few items I wanted to get (makeup brushes, wipes and gloves to make cleaning the commode and bed pan easier, my favourite shampoo and conditioner, some new hair bobbles as most of mine had broken). We also went to the bakery to get some lunch and to another shop for some sweets on the way back, as I like to take advantage of being out when I can. He was still bad on Tuesday evening, but he fell asleep not too long after taking the mirtazapine.

Wednesday morning the crisis team came out. For once, they didn’t make things worse. They can’t see a role for themselves as most of Johan’s anxiety and depression is being caused by the problems with the carers, but they are also sending out some information about advocates for Johan as I’m not well enough to do it for him any more, and contacted my social worker in an attempt to see if he can fix things with the carers. Johan then fell asleep again (mirtazapine is very good for sleep, just sometimes it’s too good) and I dozed off not too long after, as the crisis team exhausted me.

My social worker turned up in the afternoon, to the surprise of both of us. Apparently Johan had been told, and he thinks he told me, but I had no record of it so either he was mistaken or my memory was being lousy :p The social worker realised it wasn’t a good time, so rearranged to come back the next afternoon. By the evening Johan was doing a bit better, and really craving sweet and sour chicken, so went out to the Chinese to get some. He also didn’t need anywhere near as much reassurance as he had been, which is making me think the sertraline was making things worse.

Thursday was a quiet day for me. I didn’t get to sleep until 5am because of sleeping in the afternoon and things being on my mind (which I tried everything to try and solve, including typing them all up, but it didn’t work). When I woke up I was very nauseous, and ended up throwing up before being able to take the prochlorperazine. I did apply some makeup, but took it all off because I didn’t like wearing it when being sick. My social worker arrived at 2.30pm with a woman from A4E, to talk about direct payments. It was fine, apart from being exhausting, and I was also able to tell him things still aren’t improving with the carers and ask about respite for Johan. Ended up falling asleep again afterwards, while Johan went to the MetroCentre (by himself) to get his iPod repaired, which they very kindly replaced for free. Woke up this evening, went on my computer for far too long to level Elisaveta (I got her to 82) then have been resting in bed and chatting to friends in IRC all night.

I have messed up my sleep patterns, but hope to get them back to normal over the next couple of days. We have no appointments until Monday (when Johan sees a psychiatrist) so will be able to work on it. I also still need to figure out my baseline for activities, and have a plan which requires buying large quantities of non-specific, pretty greetings cards. I’m also two weeks behind on Waterloo Road, and trying to get caught up on NCIS whenever I’m feeling well enough to watch a TV programme. Plenty of things to do, just not enough energy to do them.

World Mental Health Day

Danni, Important Stuff, Mental Health, Real Life Comments Off

Oct 102011

(I have permission from Johan to talk about his mental health on my blog.)

Today I’ve had an enjoyable day. Woke up this morning, got washed, dressed, and hair done (in a French plait ) when lovely Icelandic carer came, then fell asleep again until this afternoon. This afternoon I went on my computer for a short while, and have been reading twitter and blogs while chatting to Johan about things. This evening we went to the MetroCentre, where I had makeup applied and then bought it all in Boots, followed by buying chocolates in Thorntons and going to Nandos for a lovely meal with Johan. We came home, and Johan gave me a lovely bed bath then a massage.

All that is very nice, and though I’ll pay for the day out in a day or two, it was worth it.

So what on earth does this have to do with World Mental Health Day?

I’m lucky- apart from some anxiety issues, I no longer have any severe mental health problems (I did have severe depression and also some psychotic features such as paranoia and hearing voices). I’ve been mentally stable for over 18 months, and stopped taking the last of my psychiatric medications about a week and a half ago. I had been suffering from depression for nearly 12 years before that, so I am extremely grateful to have reached this level of recovery. If it weren’t for the M.E. there is no reason why I wouldn’t be either at university or in a job right now.

Johan, on the other hand, is not so lucky. He’s currently suffering from bad depression. His brain is telling him nearly constantly to hurt himself. He is getting thoughts of suicide. His mood has dropped a lot, over the last fortnight and especially the last few days. Going out this evening and giving me a bed bath were distractions for him, but he was unable to enjoy them as he would have done if he was not depressed. He has asked me to stop him going into the kitchen and to stop him taking my medications as he’s worried that he will hurt himself. I am very worried about him.

Tomorrow we both have appointments with awesome GP, at about the same time. My appointment will be for discussing how I’m getting on with the tramadol (pretty well- it takes the edge of the pain most of the time) and probably talking about having to call an ambulance out on Saturday night (I’ve probably pulled a muscle in my chest, and it’s nowhere near as bad as it was). I’ll talk about that more in another blog post.

Johan’s appointment will be tell the doctor how Johan is getting on mood wise. He was started on sertraline a couple of weeks ago, when we told the doctor his anxiety was getting worse. Johan at the time wasn’t admitting that he was getting depressed again, so I didn’t mention it to the doctor. The medication takes a few weeks to get working, and it’s been making Johan very lethargic among other things, so we’ll be telling the doctor that. We’ll also have to tell the doctor about all the things I mentioned before. I’m hoping that awesome GP will be able to do something to help, though I’m not entirely sure what. Johan, as he’s depressed, is convinced he’s evil, he can’t be helped, and that he doesn’t deserve help. I am aware that this is depression talking, as I used to to think the same way. I do think he can be helped, and will be as supportive as I can be to try and get him that help. It may be that he will need a short stay in hospital, as I am unsure of our ability to keep him safe. Hopefully it won’t come to that.

So there we go. Today, on World Mental Health Day, I’ve been not doing anything to try and raise awareness, but more trying to cope with the mental health problems that have been hurting Johan, while at the same time have been grateful for how mine has improved.

An Early Morning Blog Post

Danni, Gaming, M.E., Mental Health, Physical Disability, Real Life, World of Warcraft 1 Response »

Jul 092011

The plan was to go to sleep earlyish (around 2am), so I’d be able to wake up before the afternoon. That didn’t exactly happen, as my hand and arm decided that they were going to be too painful to sleep.

I have given up now, taken some painkillers, tried (and failed) to distract myself in World of Warcraft (turns out I use my right hand a lot to play it :-p) and am now writing this.

Despite me being up all night, my M.E. isn’t playing up too much. I don’t have the massive leg/arm jerks that launch me off the bed. Instead I get little ones that last only a few minutes, rather than a few hours. Much more manageable. The pain is normally bearable, and if it’s not, painkillers normally bring it down to that level. I’m normally awake 12-14 hours a day, which is great. I’m normally out of bed a few hours a day. The best thing is, this is without causing relapses. I do have to spend more time in bed if I’ve gone out, or had a cold or a tummy bug, but that’s okay.

I still can’t walk, really. I can sometimes take a couple of steps across the living room, but by the second step I’m starting to fall, so I only do it to get to my bed when I feel I can (I can cross the living room in one or two steps normally). This is because I think it’s important for me to test myself on what I can do, so I don’t get deconditioned from not walking, and so I don’t forget how to.

Standing up happens sometimes. Again, it’s normally me testing myself, often when I’m trying to use the toilet or something. Often I can’t do it at all, and that’s okay as well. I’m trying to listen to my body- push it a little bit, but not so much I relapse. It seems to be working.

The carers is still an issue. Most of them now I’m fine with. My favourite carer is absolutely amazing, and I get her most mornings and the occasional evening. If I could, I’d steal her to be my carer all the time. She can do in 45 minutes what it would take me when well a week to do There are others that I get on with quite well, like the one who came and did my bath last night. I didn’t find her as easy to get on with as favourite carer to begin with, but I’m now quite comfortable with her helping me and things. To be honest, I wouldn’t mind stealing her if I couldn’t have favourite carer, as she’s lovely and does things, just maybe not as quickly as favourite carer :-p

There are other carers though that make me very anxious, just by them being here. One of them makes me outright panic just by being on the rota. So far, I’ve manage to spot it and cancel whenever she’s on it. There are some that I’m okay with coming to help with just getting changed and housework, but who make me really anxious when they help me with my bath. I don’t know why that is- I’m about as unembarrassed about my body as I can be (I’m quite happy to be naked in front of other people, including males, though I’m aware now that they may not be (and it took me until I was over 16 to learn that…) so I try not to be) though I do get a little self conscious when washing myself, more because I always feel I’m doing it wrong when I’m being watched :-p That’s easily solved though by asking the carer to leave the room for a few minutes while I do so (I’m too big to drown in the bath once I’m in safely). I dunno- maybe I’m picking up on anxiety on their part?

As my most recent Project 365 showed, I have received my Blue Badge! This means whoever is driving me places (such as Colin or staff at college) will be able to park in disabled bays without bother, and won’t have to pay parking costs a lot of the time. I’ve also got my application in for a disabled bus pass, which will give me a lot of freedom when I’m well enough for day trips, as I’ll be able to use it to go into Northumberland without paying the earth. Prudhoe watch out :-p

We’re going to Leeds next month as it’s my father-in-law’s 70th birthday. He’s nearly as old as my nana :-p I still need to book train assistance, but the hotel is booked for two nights, and I’ve paid for the train tickets. Staying two nights should mean less pressure on rest and things, and I may even get to see something while I’m there (other than Johan’s family, of course).

I’m hoping some of my other parcels arrive today. I’m expecting some shoes, some egg cups, and some micro USB cables. I’m also waiting for a Wreck This Journal and a purple Blue Badge holder, but they may take a bit longer to arrive. I also need to do an Asda order, or at least a shopping list so that Johan can go and get some items. I really fancy watermelon.

World of Warcraft has been a bit iffy. I’m still enjoying it, but I’ve had a couple of bad groups in there that don’t help my very low confidence in my healing abilities. I know theoretically that I’m actually not that bad at healing, but it doesn’t stop me being knocked everytime I get yelled at. Today it was because I didn’t feel comfortable trying to use my crowd control (mind control and shackle undead) as everytime I try to use it, I die. I even did today. We did have a DPS shaman and druid in the group, so it wasn’t like we didn’t have any, but they kept insisting. I ended up dropping group because it was making me that anxious. I felt really guilty afterwards, especially since I’d queued with a guildie (the druid) but they said they understood why I’d dropped group. The guildie covered for me by saying I had a raid :-p I have killed some raid bosses though, so I’m happier with that.

Since I finished college, I’ve noticed I’ve had more concentration for things like television shows and reading children’s books. It’s still not great and I’m not taking much in, but at least I can do it now without my mind wandering every few seconds (it’s every few minutes instead). I’m going to watch the Harry Potter films in time for the last one coming out. If I watch one or two a day, I’ve got plenty of time. I can even watch them from bed, so use less physical energy

I’m still majorly struggling to write emails, comments and letters. I’m also overwhelmed by Twitter and Facebook, though I still look at them. I’m also on Google+, which is cool I don’t know if it’ll replace Facebook, as there aren’t that many people using it yet, but it’s fun to mess with at the moment.

Oh, I also am very very slowly starting to use the phone again This is a big thing, as my phobia got so bad I wasn’t even able to talk to people I know very well on it without a panic attack. I’m starting with scripted calls, but will hopefully expand that as I get more used to it. I’ll probably never be fully comfortable with it, but being able to use it if I need to would be awesome.

I’ve also been very naughty and taken myself off my antidepressant. I don’t think it was ever doing anything for me, other than making me sleep. I’ve not noticed a decrease in mood since coming off it, though both Johan and I are monitoring it closely. I’m also slightly more alert when I get up, which is a bonus I’m not coming off the antipsychotic yet, as that was doing a lot for me and I want to see how things go. At some point I should probably tell my doctor I’m not taking the antidepressant…

Project 365 is going well, though I’m starting to run out of things to take photos of in my living room. I don’t get much in the way of interesting post unless I buy something (I do get the odd bill though) so I’m not sure what I’ll be photographing soon. It’s been fun though, and it’s been a way to blog daily without it feeling like a big effort.

Johan’s not doing so great though His anxiety is really bad, as is mine (it was before coming of the antidepressant- it’s been no worse since then) and they seem to be feeding each others, which is bad. He’s also struggling to find the motivation to do things. His emergency referral since being in hospital still hasn’t been completed though, which is getting ridiculous. I’m worried he’ll end up that ill again (especially since the stress of the carers isn’t helping) though he’s adamant that he’s not going back into hospital. I think it may be time for me to start chasing things.

The pain has now eased enough that I may be able to sleep, so I think I’m going to leave it there.

International M.E. Awareness Day

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

May 122011

So, I failed with the 30 Day Song Challenge. I’m currently not well, and have spent the last three days in bed (though I did manage to get a bath today, which helps make me feel a bit more human at least). I can’t sit up for more than a minute at a time right now without feeling really dizzy and faint, and having really bad pains in my back.

Anyway, it’s International M.E. Awareness Day today, which is part of M.E. Awareness week. Last night I recorded a video about it. How I am in the video is my normal “bad day”, if that makes any sense. It’s not the worst I’ve been, but I can be better.

Here is a blatantly stolen questionnaire (I got it from Pottering around with ME – Life According to Siz, but I have seen it on Facebook done by a few people as well.

Invisible Illness Questionnaire

1. The illness I live with is: ME/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome

2. I was diagnosed with it in: October 2010

3. But I have had symptoms since: September 2009 (or August 2009, if you include the Swine Flu I had first)

4. The biggest adjustment: Slowly going from someone who was fiercely independent, to having to accept help from Johan, and then from strangers.

5. Most people assume: That if I can do something once, I’ll be able to do it again or on another day. The illness is so variable that it’s hard for me to make plans, and I know that it can upset people when I say I can’t do something. Luckily, up to now most people have accepted I’m ill, which I know is difficult for other people with M.E.

6. The hardest part about mornings are: Actually waking up, and then staying awake for any length of time. I’m also often in a lot of pain first thing in the morning so I can’t judge if I’ll be able to get up that day. Having to get up when my carers arrive (if I can) is also difficult.

7. My Symptoms: Constant flu-like exhaustion, severe pain in my muscles and joints that are only partially helped by strong painkillers, constant headache and sore throat, muscle spasms- mostly in my hands and legs but also elsewhere, temporary paralysis in my legs and sometimes my arms (for a few hours), brain fog (short term memory problems, concentration issues, muddling words), muscle weakness that is so bad that I can’t walk or hold a pen, intolerance to light, noise and touch.

8. A gadget I couldn’t live without is: My computer, a laptop and HTC Desire. It means I can still do stuff when stuck in bed or my flat, and I can still attempt to study for my AS Level. Although not a gadget, my wheelchair is also brilliant as it means I can go out on good days.

9. The hardest part about nights are: Waking up multiple times from severe pain, and being too weak to be able to take any painkillers. Also needing the toilet, as I can’t get there.

10. Tablets a day:High dose (20,000 units) vitamin D for severe vitamin D deficiency three times a week, 50mg quetiapine and 50mg tramadol at night for my previous mental illness (which also help me sleep), 30-60mg nefopam up to three times a day for pain, 400mg ibuprofen up to three times a day for pain, 30mg lansoprazole every morning to protect my stomach from the ibuprofen.

11. Regarding alternative treatments: None so far. There are some I wouldn’t try, but I wouldn’t rule most out if I could access them and I thought they would help.

12. If I had to choose between an invisible illness or visible I would choose: Hard one I had an invisible disabilty anyway (autism/dyspraxia), so M.E. is actually slightly more visible, as I use a wheelchair. I’d go visible if I have to choose, as it is more obvious.

13. Regarding working and career: Not happening right now I attend college when I’m able to, doing an AS Level in Computing, which only works because I get a lot of support and understanding at college. I’m wanting to go to university to do Computing and Networking, and then become a network administrator, but it may be that I have to delay it. I also have a backup job option of being a computer programmer if I’m not well enough to do network administration, because I can do that from bed

14. People would be surprised to know: Despite all the moaning and grumbling I do online, in real life I’m normally quite positive and happy I also feel that being physically ill is a lot easier to deal with than being mentally ill (at least for me). The moaning and grumbling online is because I’m still not used to being this ill, and change is bad

15. The hardest thing to accept about my new reality has been: That I need so much help with things that when Johan had to go into hospital, I had to go into a care home. Also, not being able to be intimate with Johan, as any touch is too painful.

16. Something I never thought I could do with my illness that I did was: Recover from depression It’s probably not due to being ill (though the enforced rest helped), but I would have thought that the illness would help keep me depressed.

17. The commercials about my illness: Don’t exist. Which is wrong.

18. Something I really miss doing since I was diagnosed is: Reading long books in one sitting. Going out whenever I fancied it, rather than only when I’m well enough. Being able to meet up with friends. Being able to manage a full week at college. Being able to stay awake for more than a few hours at a time.

19. It was really hard to have to give up: Being independent.

20. A new hobby I have taken up since my diagnosis is: Napping during the day Seriously, I’ve not really taken up any new hobbies, but I appreciate the one I have continued with (playing World of Warcraft) a lot more.

21. If I could have one day of feeling normal again: I’d probably just go to college, without my wheelchair, and spend time with my friends there and go to all my lessons Also spend time with Johan afterwards

22. My illness has taught me: That good friends will stick with you no matter what, and there are plenty of people who are willing to help, even in small ways such as opening doors and things. There are also people who don’t like moving from the wheelchair bay on the bus, which can be frustrating.

23. Want to know a secret: To manage college, I’ve basically given up everything else. I don’t even play World of Warcraft that often any more. Also, my main rule for whether I’m well enough to go into college is can I keep my eyes open and sit up? If so, I go in. This is probably not doing my health much good, but so long as I can get through my exam it’ll be worth it.

24. But I love it when people: Offer to help, with specific things. Open questions are very difficult for me to deal with, so things like “do you need anything?” or “anything I can do?” makes me panic. Also, when friends understand if I don’t reply to messages, or don’t make contact that often.

25. My favourite motto, scripture, quote that gets me through tough times is: It’ll be okay in the end.

26. When someone is diagnosed I’d like to tell them: To listen to their bodies, accept help if it’s offered, and rest. Also, there are no guarantees with this illness, so don’t worry too much if you get worse- there’s a good chance you’ll get better as well. It’s also very individual- what happens to someone else may not happen to you- which includes treatments and things.

27. Something that has surprised me about living with an illness is: Just how variable it can be, even through the day. Also that even little things can cause a big relapse, and that you just have to go with it.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visited me in the care home It made me feel much better. Also friends who are understanding and try and make things easier for me.

29. The fact that you read this list makes me feel: Happy that you’ve maybe learnt a little bit about this illness Also amazed you’ve managed to read this far

30. Something I want people to take away from this: M.E. is a real, physical illness. It can vary a lot- one day someone with it may seem perfectly fine, but underneath they may be struggling, and if they do too much they could end up unable to get out of bed. It’s also variable, so some people my have it mildly, whereas others may be so severely ill they have to stay in a darkened room, be tubefed, and cannot tolerate any noise, light or touch.

Chlay’s single, Silently (and other stuff): http://chlay.blogspot.com/
http://www.amazon.co.uk/gp/product/B003ES1PWM/ref=dm_dp_trk5
(Also available on iTunes)

AYME (where I’ve met many wonderful people): http://ayme.org.uk

Action for M.E.: http://www.actionforme.org.uk/

ME Association: http://www.meassociation.org.uk/

An (overdue) Update

Autism, College, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life 1 Response »

Apr 152011

A lot has happened since my last update in February. The big thing is that Johan’s depression became really bad, which resulted in him having to go into hospital for a bit on 27th March. You can read more about that on his blog here. This was mainly because we still had no help from social services, and even though they’d been warned he was getting that ill they didn’t do anything.

Because Johan went into hospital, social services had to start providing my care. The morning the nurses came out on the Monday (Colin stayed with me overnight on the Sunday, but had to leave for work at 6.30am) they realised I needed a lot more help than two visits daily would allow, as I need help with getting drinks, getting to the toilet, getting food and stuff, as well as things like washing and dressing. Because of this, it was decided I needed to go into a care home while Johan was in hospital. One was found that would take me, and then an ambulance came to take me there (social services suggested a taxi, until Louise (from college) told them I couldn’t walk and was in an upstairs flat, so would need help getting down the stairs). I managed to forget things as I normally do, but it was sorted in the end.

The care home itself was okay. It’s designed for people with physical and learning disabilities, and the other residents were nice. My room was okay, apart from being very brown (I don’t like brown that much) and the doors being too heavy for me to open. This meant that I couldn’t manage to take myself to the toilet after a while, as even though I could crawl there (until I got ill- more on that in a moment) I couldn’t open the door. There were other problems as well, that we’d not realised would happen. I can’t ask for things for myself and I can’t cope with open questions, such as “do you need anything?” (this is a communication problem caused by my autism). This caused problems. It became a big issue on the Friday when I couldn’t ask to get into pyjamas, so had to sleep in my day clothes, including my big hoodie (I can’t lift my arms above shoulder height, so need someone to help me with my top half of clothing).

By Saturday I was ill- I’d overdone it (crawling to the toilet, lifting my bottle of diet coke so I could have a drink, getting myself ready for college on Wednesday morning because the staff claimed I’d changed my mind about going, when I hadn’t, and things) and I couldn’t sit up unsupported or move much. I was in a lot of pain, and I became non-verbal, which is normal when I’m overloaded. The staff’s response was to keep asking me to talk to them. I couldn’t- I couldn’t remember how to speak, and my attempts to do so failed. They had been warned that this could happen, and it was on my care plan, but it must have been forgotten at the time. One of the care staff even touched my face (there was a big sign on the door telling them not to touch me without asking) which didn’t help, and caused me to panic.

Because of my inability to communicate, I went without a drink or going to the toilet for 19 hours. This was not good. I still have a mild UTI from this. When I finally was able to type on my phone, and get one of the care staff to look at it, I was able to tell them that I couldn’t speak, and that the pain was unbearable and I couldn’t take codeine (on the Monday I’d taken some and the abdominal spasms where horrendous even with the buscopan). They called the doctor out, and while I waited (it took him 6 hours to arrive) Johan came and saw me.

Johan was able to get me out of my hoodie (when I’m that ill, I alternate between sweating madly and feeling too hot, to being freezing, so wearing a big hoodie was not the best), get me a drink and somehow get me to the toilet. He was also able to tell the care staff that I needed more help than they were giving me. Louise also phoned the care home (we were in contact via email) and told them about how my autism affects me, and that they need to ask closed questions, such as “do you need a drink?” or “do you need the toilet?”. After she’d spoken to them, things improved a bit, but there were still times they only asked open questions and I couldn’t answer.

Luckily while Johan was there I slowly got the ability to speak back (being more comfortable and being able to talk with him using messenger helped) so when the doctor arrived a few hours later I was able to explain to him that the pain was unbearable and I was too scared to take codeine because of the abdominal spasms being nearly as bad. He gave me a prescription for nefopam, which I’d never heard of before. The care home promised I’d be able to get it in the morning (it was quite late at this point).

Sunday I was still in a lot of pain, and still unable to get out of bed except to go to the toilet, but at least I was now able to drink. My visit that day also cheered me up a bit, which helped. Unfortunately, the chemist the care home uses decided to not be open that day because of a wedding, and hadn’t told them so I wasn’t able to get any painkillers that day at all. I survived though.

On Monday I finally got my painkillers, and they helped a lot. This meant that by the evening I was feeling much better, was able to sit up, and finally got a bath so felt a lot more human (I’d meant to have one on the Friday, but it didn’t happen). Tuesday I was able to go back to college, but by this point the stress from the weekend, on top of the anxiety caused by not knowing if my needs were going to be met meant my mental health had started to get worse, and I started having my first thoughts about suicide in a year. By Friday’s meeting with my social worker and the home care staff (I had been reassessed during this time- the previous assessments weren’t good enough for the physical disabilities team) I was desperate to get home, so when they said that the home care would only be another 10 days, Johan agreed that it would be better for both of us for me to be home. I’ve been back a week and my mental health has gone back to being mostly stable, so I guess it was just the stress.

The good news is that the home carers start on Monday I’m getting 12 hours a week from them, some in the morning, some in the evening. They’ll help me with getting up in the mornings, getting ready for bed at night, baths three times a week, and also help with doing some basic housework on days I’m not having a bath. This should take a lot of the stress off Johan (who is doing a lot better), which should help a lot.

Okay, what else has happened? I have seen the M.E. specialist, who wants to make sure my tiredness and stuff is not caused by depression (erm, apart from the blip caused by the stress of being in the care home, I’ve not been depressed for a year) or being autistic (even with the explanation I was given about it being caused by overload, I’m not convinced it can cause such exhaustion that you can’t walk). Hopefully once that’s happened, and the M.E. is confirmed again, I should get some coping strategies and things to help. I know that M.E. can’t be cured, but I’ll accept any help at the moment I can, as my functioning is really poor.

I also got my exam result from my AS Computing. I got an A This is awesome. My predicted grade for the next exam is either an A or a B, depending on what sort of day I’m having. I’ve been enjoying the programming part of the course, even though Visual Basic.net is a bit weird in how it does things. I’m still slightly behind, as I’ve missed a lot of lessons because of being too ill to get in, but I’ll be able to catch up as it’s the Easter holidays now.

Interface has been good. I’m now running an Internet club for the other students, doing stuff like how to send emails, how to behave appropriately on different parts of the internet, how to keep yourself safe and things. I’m hoping it’ll go well.

Tomorrow I’m going to a friend’s wedding. Yay! This will be the first wedding I’ve ever been to as a guest, so it’s very exciting. I may blog about it afterwards

On my functioning- well, I can stand up for a few seconds on a good day (yay!) but there are so many things I can’t do or need help with. I can’t walk at all, I can’t lift anything heavy so need someone else to pour my drinks, I knock things over all the time (the M.E. has made my dyspraxia much worse). I need someone to brush my teeth, wash/brush my hair, help me with the top half of my clothing. I need my food cut up for me as I can’t do it myself, and often have to eat with my hands because holding a fork or spoon causes my hand to shake uncontrollably. I can self propel my wheelchair for a few seconds, but it’s normally just enough to get around the toilet or get through doors if needed, and if I try to do too much I end up stuck in bed. I can type, but writing is nearly impossible. This is all on good days- on bad days I can’t get out of bed, can’t sit unsupported, and sometimes need Johan to feed me or hold my cup to my mouth. I hate being so dependant on other people, but I’m starting to get used to it.

Okay, I think this blog post is long enough now, but I may do that 30 day song challenge thing I’ve seen on other blogs, starting tomorrow. No promises, though

Crawling Penguins

College, Computers, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life, World of Warcraft 2 Responses »

Feb 202011

I’ve had an interesting time. I saw my GP. He persuaded me to try codeine again, at a higher dose. It worked… for the first 90 minutes. Then I had the most horrendous stomach cramps- worse than the pain I was already in. So I stopped taking it. A week later, I ended up in A+E because the pain was unbearable. The morphine I was given also gave me stomach cramps. Because the doctor was able to ask what they were like while I was there, I was able to describe that they were like spasms (I have very poor body awareness and also a bad short/medium term memory, so after they’ve finished I can’t remember what they’re like). She had a think, gave me buscopan and it worked! No more stomach cramps. She also gave me tramadol to last a week (well, until the next morning with a prescription for the week) to last until I saw my GP.

My GP took me off the tramadol and put me back on the codeine, with the buscopan. It works, but it turns out not all the tummy troubles were spasms- I still get a really sore, uncomfortable abdomen with the codeine, but without the spasms I’m not rolling around in agony. I’m taking it because my experiment of not taking it failed, but I’m not happy as tramadol didn’t cause the same problems, and worked better. I am aware that the tramadol shouldn’t really be taken with the other medication I’m on though as it can cause fits, so I’m being a good girl (mostly).

Seeing the doctor also made me a lot more ill. He had me trying to stand up and trying to walk, which exhausted me so much, I’ve been bedbound pretty much all the time since then. Yeah, thanks. I’m currently refusing to go back there, as it’s not worth making myself more ill over it. I need more codeine though, as I only had 2 weeks worth from the first time, so I need to figure out a way of getting a prescription without getting out of bed or using the phone. I suspect I may be writing a letter, then asking Johan to take it down there.

I did manage to get out of bed long enough to go to college last Monday, but I couldn’t concentrate and I really wasn’t well enough to be there, as now I can’t even sit up unsupported for a few minutes. I’ve fallen really behind on Computing, especially since my brain is really foggy. It is half term next week though, so I’m hoping to be able to catch up a bit. I also need to do a bit of catching up with Interface work, but that’s not quite as difficult so shouldn’t take too long, though if it’s worksheets I’ll need a scribe as I can’t hold a pen for much longer than to sign my signature.

Some good news though- my laptop has been repaired, and now works mostly okay. It needs a new battery (not covered by insurance) but it lasts long enough, and since I don’t move around much I can keep it plugged in. It also means that when my concentration comes back I can do some Computing work in bed, as the laptop has Windows on it and runs well enough for VB.Net. I can also play World of Warcraft on it. It’s not good enough for instances or raids, but it’s okay for chatting and dailies. It’s also lighter and cooler than Johan’s laptop, so better for me in bed. I’m really happy to have it back.

In World of Warcraft, I’ve completed my first level 85 normal dungeon! Possibly not the biggest achievement, but it felt good and went well. I could tell how healing has changed, and how I need to adapt for when I get to heroics and raids. I also went to ICC and did a ton of hardmodes, and achievements. It was a lot of fun, as with being all level 85 it didn’t require much concentration, and I already knew most of the fights. I’m hoping to be able to do the rest of it with the same group.

My mood has been a bit up and down, mostly because of pain and being fed up of being stuck in bed. Overall it’s good, I just get a bit sad or upset when I can’t do something, like sit up. Johan’s been pretty ill though- he had a breakdown, and his anxiety and depression got really bad, and he couldn’t speak. He’s back on medication to help with anxiety, and has been referred to the CMHT to get help overall. We know the main cause is being under so much stress from looking after me, but he needs a bit of help to get through this patch.

We finally got our Social Services assessments. The conclusion is I should be entitled to quite a bit of help with personal care, and hopefully Johan can get some respite. Eventually, I’ll probably get a personal assistant, who may be able to help me with getting to and from college. That would be awesome. We also have forms to fill in to move house, on medical needs. I need a property which has level or ramped access, an adapted bathroom, and that is generally wheelchair accessible, since it doesn’t look like I’ll be walking any time soon. When we have moved, I’ll be getting an electric wheelchair if my appeal for higher rate mobility is successful, which would be awesome, as it would give me so much independence.

I’m trying to think of things that I can do in bed, that won’t make me any more ill. I really need to spend less time on my laptop, and I can’t concentrate well enough to read, so I’m thinking of maybe getting some crafty stuff like beads to work with for when I’m not napping. I’m hoping that I’ll be able to get up and maybe go out soon. I’m on day four of not biting my nails, so I’m hoping to get some nail varnish and things to make them pretty

I’ll try not to take so long over my next blog post

On Disability and DLA (One Month Before Heartbreak)

Autism, Danni, Important Stuff, Mental Health, Physical Disability, Real Life 4 Responses »

Jan 162011

Before you read my post, I want you to read this.

Back? Okay.

I am disabled. I have always had some form of disability. I was born autistic, with difficulties in communication and interacting with the world, a world that’s not really designed for people who think and see things like I do. I developed mental health problems when I was about 12. When I was 18, I had my first stay in a psychiatric ward. While there, I was told I should claim DLA, as my mental health problems were so severe I needed a lot of help just to live. I was one of the lucky ones- I applied and was awarded Higher Care and Lower Mobility on my first try. This means that the assessors agreed that I needed a lot of help during the day, at night, and when I went out.

When I say I was lucky, I mean it. Getting that rate of DLA meant I was automatically considered too ill to work, which meant that I could claim Income Support for incapacity purposes (I was ineligible for Incapacity Benefit as it was then because I’d not made any national insurance contributions) without having to go for medicals. Getting it on my first try meant I didn’t have to try and navigate the appeals system, which I was too ill to try and do. It meant that my partner could claim Carer’s Allowance, which meant he didn’t have to try and work and look after me full time.

The money from DLA pays for me to live as normal a life as possible. The mobility component pays most of the cost of my husband’s travel pass, as I cannot travel independently. The care component has paid for my wheelchair, for other items to help me with my disability. It has paid for ready meals and takeaways so when I was living alone I was able to eat everyday. It has paid for extra clothing when I’ve had weight gain due to medication. It paid for a clothes dryer which meant until my recent relapse, I could still do the washing. It pays for my internet connection so even when I’ve been very ill, I’ve been able to communicate. It pays for my travel costs to attend a college 20 miles away, one where I get specialist support that has enabled me to continue with my education. It has also enabled me to have enough money to pay for my interests, which went a long way in helping me come out of my nearly 12 year long depression.

In addition, Income Support is a passport benefit. It means that my council tax and rent are paid for me (I’m on Local Housing Allowance, which enables me to live in my flat). It pays for my prescriptions, which while I was trying out lots of different medications to try and help me would have been very expensive. The main thing though is that while I am ill, I don’t have to think about working, and nor does the person looking after me (a full time job that currently involves 6+ hours of travelling four days a week, on top of everything else).

I was hoping that once my mental health improved, I would no longer need DLA at the rate I was getting it. I will probably always be eligible for and need some DLA- even when completely well, my communication difficulties and lack of safety while outside caused by being autistic would mean I’d always need some support. Unfortunately, after getting the flu in August 2009 I continued to be physically ill, and I was diagnosed with M.E. a few months ago. The caring duties of my husband now include pushing me to college (as I am unable to walk for more than a minute, or self propel my wheelchair for much longer), physically helping me with tasks such as washing and dressing, making sure I eat even when I feel too ill to do so, and taking over all household tasks as I’m physically unable to do. I also need near constant companionship, because although I’m no longer depressed my brain is still quite capable of turning into a scared, shaky rat thinking that everything is out to get me and I need reassurance that it isn’t the case.

Do I want to work? Yes, very much so. I still look at job adverts in areas that I would be good at, if only I were well enough. I imagine applying for those jobs, being able to earn a wage, to stop being reliant on other people. I dream of being able to walk into an office, being able to manage a full workday, being productive. That’s all not possible at the moment. I manage college part time with frequent rest breaks and with an appalling attendance record. My lecturers are understanding if I cannot get into college that week- an employer wouldn’t be. I also have to rely on support staff while in college to push me to my lessons, to take me to get my lunch, to help me get to the toilet. The reason I continue to go to college is to get me the qualifications I need to eventually be able to work in an area that interests me, as most jobs for those without qualifications aren’t suitable due to things that go with being autistic, such as being sensitive to noise.

Take away my DLA, and I will no longer be able to attend college, or to buy the extra items that being disabled I need, including things like my wheelchair. Take away my Income Support, and I will no longer be able to live in my flat, to take my medication, to eat, to manage anything. I’ll be homeless while unable to walk, while unable to communicate effectively, while unable to care for myself. Force my husband to work, and my illness will get worse (as it did while he was ill). I’ve not been suicidal now for several months, but being dead is probably preferable than trying to live without the support, both financial and practical, that I currently get.

I apologise for the muddled-upness of this blog post. I used all my writing spoons on my exam on Thursday.

For Johan’s blog post on this subject, please see Why We Can’t Grin and Bear It Anymore.

For other blog posts in this blog swarm, please see One Month Before Heartbreak.

Please feel free to link and share this blog post. I’m releasing it under an Attribution-Share Alike licence.

On Disability and DLA (One Month Before Heartbreak) by Danni Brennand is licensed under a Creative Commons Attribution-ShareAlike 2.0 UK: England & Wales License.
Based on a work at dannilion.com.

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