Category: Physical Disability

Danni

I Want a Bath

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

I think I’m over the worst of the relapse. It never got as bad as in December, in that for some of the day at least I could tolerate small amounts of sound and some light with sunglasses on, and never stopped drinking, but I still was very ill and my arch nemesis the bed pan was brought back into action when trying to use the commode made me much worse.

There are some residual effects. Because I was moving much less than is normal for me (not that I move much anyway, but during the relapse I was only moving every 3-4 hours to adjust position as that was all I could manage) I got severe constipation. When I started moving again, so did my digestive system and the pain involved was immense, as it aggravated my hemorrhoids and I think I may have torn the skin as well. Luckily we had some Orajel in and that helped (I checked online that it was okay to be used that way). I think for next time I’m going to ask the doctor for some laxatives to be taken during a relapse so it never gets to that point (it was the same after the December relapse). Johan went to my doctors appointment on Friday and the doctor is going to ask the CFS Clinic about stronger painkillers for relapses, as I can’t have oramorph and tramadol just isn’t strong enough (for my normal levels of pain tramadol is my wonder drug- takes the edge off it so I’m able to do stuff and concentrate on things other than pain).

I’m still not great. On Friday evening I was able to go on my computer for a bit so played World of Warcraft, which made me very happy 😀 Unfortunately since then I’ve been stuck in bed again, as just been really weak and bleh. Luckily double tramadol is enough for my pain now so that is good. My sleep is also all over the place so that’s making things awkward for Johan.

The biggest thing I want now is a bath. Of course, at this new flat we don’t have one, and there’s still another 5 weeks to go until the shower is usable. I haven’t had a proper wash for nearly 3 weeks now, and my hair is also very greasy. I’ve been meaning to have one since Friday (which was the first day I was well enough to be able to tolerate one) but with me sleeping all day and Johan having brain explosions we’ve not got around to it yet.

Having a wash for most people isn’t a big task, but for me it’s one of the harder things to do. It’s one of the areas that autism and dyspraxia makes things harder than it would be if I only had M.E. Because I’m touch sensitive, being washed is very overwhelming, so I can only do it lying down (that’s been the case for about a year now, even when I was able to go out and about). Luckily my smell sensitivity isn’t as bad as it can be, so I when I am washed I use some things with nice smells, such as my cherry almond shampoo (reminds me of bakewell tart) and coconut body wash. When we had a bath I used to lie down in it using the reclining bath seat, have my hair washed (either by a carer before we sacked them or by Johan) then I’d soak in the water to clean most of me, using body wash on my face and selected other areas. As I wasn’t trying to wash everywhere directly, I was able to do the washing my body bit myself most of the time which gave me some independence.

Now we don’t have a bath, I have to wash in bed (there’s nowhere in the bathroom for me to lie down yet). We have a bed shampoo thing, so Johan washes my hair in that and tries not to knock the bucket over and soak everything on my floor 😛 After he’s washed my hair (I’m currently using a 2 in 1 shampoo and conditioner to make things easier) he washes my body. I normally do my face but the effort of that is normally me completely exhausted, so Johan washes the rest of my body. Some days I’m not well enough for all of it to be done, so he concentrates on the smelliest areas. Then I rest. Of course I’ve missed out the bit where Johan has to fetch everything and bring it into my bedroom, which sometimes makes his head explode. It’s a massive task and I try and have my hair washed every week or so (with a full body wash) but sometimes my illness gets in the way.

Because of the problems Johan is having, we’re getting carers in again. We’re giving up on direct payments for now as neither of us are able to manage the paperwork yet, so we’re going back to commissioned care. As we’ve moved to a more central area, there are more agencies covering where we live so it will be easier to change if things don’t go well, but the old care company don’t operate in this area so we’re hopeful. This time we’ll be able to tell them what doesn’t work for us and how they can help us from the beginning, so that should make things easier as well.

We’re also going to be having council cleaners to come in and help, which we’ll pay for ourselves. This will be a massive help for Johan as he’s just overwhelmed with everything at the moment. Our social worker had forgotten that we’d asked for this already but we’ve told him again so hopefully that will happen soon. I think if Johan knows that we’ll be having someone come in every week to do the bulk of the cleaning it will take the pressure off and he’ll be able to do some of the easier things himself.

Things aren’t brilliant but they could be worse. Of course I’m aware that just being eligible for carers makes me very lucky, though it’s because I’m severely disabled and if Johan breaks down again I’ll have to go into a care home, which is more expensive for social services and which we don’t want (my current care needs are classed as substantial).

Now I just need to improve. First step, having that wash (hopefully today), then maybe soon I’ll be able to go into the living room again. I have some orphans to take around Azeroth 🙂

Danni

Beds and Bathrooms

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

I am in relapse. Every day I am doing worse. Currently unable to get out of bed other than to use the commode (which is next to the bed). I can manage 2 pillows under my head, but can’t be propped up any more than that. And I’m sleeping a lot more than I do normally. Pain is unbearable even with full dose of painkillers and I feel very ill.

It’s not as bad as it could be (see December) but it’s not great. I’m light sensitive but not exceptionally so, so can manage with low level lighting and normal glasses, and sunglasses if the light is brighter. My ear defenders are on and off depending on what upstairs are doing (they’ve recently moved in so are still building furniture and decorating). My blind won’t be put up until I improve a bit because of the noise so I’ve asked Johan to find the old curtains to put them up. I can still have Johan hold my hand. My speech was gone this morning but came back this afternoon. I can just about manage, though may need to see the doctor if it gets much worse.

The OT came out about the bathroom this morning. They’re rearranging the whole lot, boxing the pump in so it’ll be a lot quieter (the new lady agrees it’s far too loud, so that’s everyone so far :P), giving me a new shower with Danni-friendly controls (the OT showed it to me and let me play, and even with my current levels of weakness I could use them so will be awesome with my normal level of strength), the toilet will be moved back so I can lean on the cistern and the sink is going to be moved so there will be a bit more room in there.

The bad part was I was too ill to have my assessment for a shower seat, as the OT needs to see me transfer and I can’t do it today. I also had no voice so it was hard to communicate. The good news is that she’s given me her email address so I can email any questions to her. I think I’m going to ask to make an appointment just for assessment when I improve a bit, so she stops coming out when I’m stuck in bed. She’s also going to see about loosening the door a little bit so it doesn’t close quite as fast so we can get out easier. She can’t do anything about the communal door, but I’ve got my own ideas for that (a door stop that we only use when trying to get me through it).

Knackered now after typing this so I think I’ll have another nap. Hopefully I’ll be better soon. If I don’t respond to people on Twitter, Facebook or elsewhere, or disappear for a bit, this is why.

Danni

Dead Drive

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

As I write this, my blog is not working. On Sunday night as I was typing up another blog post (which I may or may not post- some of it is no longer relevant) the server this blog is hosted on suddenly died. Some quick diagnostics showed that the main hard drive was dead (at least we think so- fsck on that drive would cause a kernel panic, which is not normal behaviour). Due to various issues it took until Tuesday to get a new drive in and the operating system installed. As my emails go through the server, we set up a temporary account so that my normal email forwarding would work again. Luckily it seems I’ve not lost many- most of the important ones from Monday and Tuesday seem to have come through, along with lots of unimportant ones from Sunday, Monday and Tuesday.

All the accounts on the server had been backed up on the 14th (the weekly backup), and I have a database backup for my blog from the 15th. Once the backup drive is reconnected all the accounts will be restored, and that will mean my blog should work again and I’ll be able to post this. That should happen later today (Wednesday). It’s very frustrating, especially since I’m no longer well enough to sort it out like I used to, which would have sped things up a bit (Colin working is one of the reasons it took a while to sort out).

Normally my email system makes me happy. Everything is backed up on the server, then it gets forwarded to GMail. So long as the server is working, this means I have two copies of all my emails, which means that should I lose access to my GMail account it won’t be anything more than a minor inconvenience. I may need to rethink it after this though. I don’t mind massively my blog being down for a few days, but I’m going to start keeping my own backups on my computer so if something like this happens again I’d be able to move it quickly if needed (which would also solve the email problem as I could set up the forwarding again from wherever I move it).

Apart from the server playing up so I was without access to my emails for a couple of days and my blog for three, I’ve been doing not brilliantly. I think I’m relapsing a bit. Monday I slept for 20 hours, which meant I didn’t eat. Tuesday I saw the nurse, but wasn’t well at all and couldn’t hold my head up, which was very uncomfortable (the harness held my body up so I wasn’t slumped anywhere near as much as I would have been otherwise). I’ve also been in a lot of pain- at midnight I took two tramadol (I can normally manage with one) but I’m still in too much pain to sleep, despite being sleepy enough. I managed to go on the computer for a bit on Tuesday evening to sort things out, do a Tesco shop and manage a couple of easy quests in World of Warcraft, but it was a bad idea really as I’m paying for it now. Before that I’d not been out of bed since Friday night, other than to see the nurse. I’m mostly bedbound again.

So, seeing the nurse. We’re about 10-15 minutes pushing distance (took about 10 minutes to get there, 15 minutes back) from the doctors surgery, and my head was floppy the entire time, which was very annoying and uncomfortable. It turns out the appointment was an hour later than Johan thought, and by the time I got there I was feeling really ill. The nurse was able to squeeze us in though so I didn’t have to go back. We went in and it was fine. She noticed my penguins and told me see had been to New Zealand and seen some there (good move- talking about penguins automatically makes me calmer) and then we went through some of the registration questions (Johan had told her about me at his appointment so I didn’t have to answer all of them). She told Johan off for not taking in his urine sample (he’d forgotten) but it was in such a nice way he didn’t feel bad. I told her my height and weight as they don’t have the facilities to do them if you can’t stand there, and she didn’t ask to take my blood pressure or anything probably because she could see it would have been too much for me. She told me if I needed a home visit at any time that is no problem (she knew from me having to cancel last week that sometimes I’m too ill to get to the surgery) and also said she’d ask about a wheelchair assessment for me. We likes her a lot 🙂 It definitely feels like a community doctors, where everyone knows everyone (the nurse said that she was glad I’d made it in because now she could put a face to a name and she never forgets anyone) and I was spoken to in a very warm, nice way that wasn’t patronising. When we got home Johan hauled me onto the bed as I wasn’t well enough to get myself on it (not paralysed for once, just far too weak and uncoordinated) and I rested for a few hours.

Johan also went out to get a blackout blind for my bedroom. If I am starting to relapse, then this will be important to keep my room dark and try and reduce the amount of symptoms I’m getting (I’ve had periods where I’ve had to wear sunglasses in bed already). It will also help as my sleeping pattern is completely broken so sometimes I can’t sleep until it’s already light. The blind is purple so will work well in my bedroom 🙂

There is so much I want to do. I want to read. I want to go out more. I want to be able to watch my favourite television shows, not just the ones that don’t overwhelm me or don’t require my concentration. I want to be able to tidy my bedroom 😛 Maybe one day.

Danni

Penguins and Pyjamas and Sofas

Danni, M.E., Penguins!, Physical Disability, Real Life

As it’s the early hours of the morning, it is normal Danni blogging time. I am not entirely sure why I blog at this time, but it may be because I’m slightly bored and Johan is asleep.

Later today there is a Mad Up happening in London. I am not well enough yet to go, but I am sending Johan and he’s taking Erica (one of my penguins) on my behalf. There will be lots of friends there and I’m hoping if Johan can get a signal to say hello over Google Talk. My brother Martin is coming to look after me, and is staying overnight. I’m happy I can manage the commode by myself now or Johan wouldn’t be able to go (I feel a bit uncomfortable with my brother providing that sort of personal care).

I bought an iPhone 4S. I feel kind of bad about it as I thought I should never buy an Apple product, but it’s nice. It just works, and there are better, more polished apps for it than for Android, especially communication ones. I have yet to decide what communication app to go for- the best is Proloquo2Go but that’s nearly $200 and I’d need to save for that. There may be others that are suitable that are more in my price range but I’ll have to do some research.

I’ve not been out again since Sunday. I got some mild payback (extra tiredness and pain) but nothing too serious from it, then on Wednesday (I think) I had tramadol withdrawal symptoms as I’d forgotten to take any for over 24 hours. As I’ve been pretty reliant on it since my December relapse, my body did not like suddenly going without. I felt really ill, had a lot of pain, sweating, and was nauseous to the point of heaving. I took a tramadol and a cyclizine to deal with the nausea, and fell asleep for the day. Since then I’ve been really out of it, which is noticeable to Johan. Chatting and concentrating are much harder than it was at the beginning of the week, and they weren’t exactly easy then. Hopefully it’ll ease off soon.

Good news: we’ve found a GP surgery, and so far they’ve been awesome. They let Johan sign registration forms on my behalf (even signing things is very painful for me at the moment), made an appointment with the GP for me for medication before I’d been to the registration appointment with the nurse, and didn’t ask for loads of ID like the last surgery did. I was meant to go to the GP yesterday (Friday) morning for my meds (I was out of tramadol completely), but getting ready made me too ill to actually go. Johan phoned the surgery to ask if he could attend on my behalf, they agreed, and so he did so.

The GP he saw was brilliant. From what Johan has said she seemed to understand M.E. pretty well, asked if I’d been diagnosed by Dr. S, my consultant, and was quite happy to prescribe 100 tramadol and 1 litre of ibuprofen liquid for me (he didn’t ask for any amount). When Johan explained our fears of getting a GP who thought that M.E. was all in the head or would want me to go for CBT or GET she said something along the lines of that although they don’t know what causes it or how to fix it, they’ll just do what they can to help manage it. That’s exactly what I want and need from a GP, and she even mentioned that 100 tramadol would last me 12.5 days 😛 (that is how long it would last if I took the maximum dose constantly- at the moment it normally lasts me around a month). She did say she’s not there all the time so we probably won’t see her much, but if the others in the surgery are even half as good we’ll be happy. I can’t believe how lucky I am with doctors.

I was also meant to see the nurse for the registration appointment in the afternoon, but Johan rearranged that for next Tuesday. He still went to his though, and from what I gather the nurse was really nice, to the point where his pulse and blood pressure were perfect. This means he wasn’t that anxious- he said that she spoke to him in a way that relaxed him. I do know that when he came home he wasn’t anxious, which is very unusual for him (especially having been to the doctors). He said it feels more like a community surgery than the other one we tried, and it also has the advantage of being the closest one according to the NHS website (which wasn’t working when we first looked, or we’d have known about it earlier).

I have a new GP appointment in a couple of weeks, as I have a couple of things I want to discuss in person and it will mean they have a better idea of who they’re dealing with. Both the nurse appointment and the new GP appointment are in the afternoon, which should mean I’ll be able to get there, as even when I’ve not been up all night I’m useless in the morning.

Other stuff… I got a pink Curve Connect Trabasack 😀 I loved my normal black one, but since I’m so clumsy now we were thinking of getting me a connect one (you can use velcro on it to hold things on) and Johan wanted a normal one because he broke the old one. So he’s got my old black one and I’ve got the nice new pink one. I’ve not attached anything to it yet as got to figure out which velcro to use for what (there are two different ones, one is more secure/harder to pull off than the other) but I’ll be putting some on the back of my tablet to secure it to it, with something to cover the velcro for when I’m not using it. I was thinking a cloth but now I’m thinking I could make a sign or something and attach that to the velcro 😀 While in Taybarns on Sunday I was able to use the black Trabasack to put my plate on while Johan was pushing me around so I was able to go up to the food counters myself and choose exactly what I wanted to eat, instead of having to send Johan to guess like we used to do. It was also steady enough to put our drinks glasses on while he was pushing me. Johan is taking the black one to London to hold all his techy stuff. This time he is not going to try and carry all his clothes and toiletries in there as well (which is what completely broke the old broken one) but is taking a backpack as well.

I’ve also ordered a wheelchair cushion and a cutlery handle thing to try and make things a bit easier for me. They’ve yet to arrive.

I watched some proper telly last night for the first time in a bit, just lying on the sofa. Supernanny US, Have I Got News for You, some Graham Norton and Matt Lucas as they were on. Nothing that requires any real concentration (like The Big Bang Theory- I’ve had to give up on that for now :'( ) but it was good to do. I’m also wearing my favourite pink penguin pyjamas which were clean out of the dryer so I’m happy 🙂 Overall I’m not doing brilliant but I’m happy enough 🙂

Danni

I’m Lucky

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

I’m very lucky.

Since I got M.E, I’ve never had anyone important disbelieve I’m physically ill. Johan, my old GP, consultant, old psychiatrist, the CFS clinic people, social services, my friends and even the ATOS doctor assessing me for DLA have all accepted that yes, I am as ill as I say I am, it is a physical illness and they try to do what they can to help me to deal with it and improve. From my friends and reading stuff on the internet, this seems to be unusual, and that’s wrong. I’ve even been treated well in two different A+E clinics- the Queen Elizabeth had a doctor troubleshooting what to do about my bad reaction to morphine (abdominal spasms- she gave me buscopam which helped) and the RVI had to pick me off the floor with a hoist but were very nice to me while doing so (in that case I’d just been sat up too long at an outpatient appointment and my body protested by jerking- I was fine to go home after lying down on the floor/trolley for a bit).

I’ve experienced very severe M.E (no voluntary movement, inability to communicate, Johan’s breathing making me feel deathly ill, going in and out of consciousness, being in so much pain I kept passing out) but was lucky that the worst of it only lasted a few days, and overall the relapse only lasted a month or so. Since then I’ve been gradually improving in every area but cognitive and am now roughly back to where I was early October, before the chain of events that caused my massive relapse and made me housebound and then bedbound. That it only took 6 months to get back to being able to go out somewhat reliably is something I’m very grateful for.

When the CFS clinic people (I need to think of a shorter description for them, oh well :P) came out a couple of weeks ago they were great, apart from the appointment giving me payback 😛 They’re fine with me not following any formal treatment plan at the moment (they normally do graded activity therapy, which is customised to the patient) as my listening to my body and slowly pushing it when I feel ready is working, and they accept that. They gave me a couple of suggestions on ways to build up the muscles in my back so I can hopefully support myself when sitting up again, and helped me with my leg problem, and they’ll come back out in May. That they are willing to do home visits and were willing to help me when I was severely affected (when we asked them for the home appointment I was still completely bedbound) is also unusual from what I’ve read. Yes the appointment was exhausting and I got payback, but it was useful and I feel better knowing that if I need to, I can contact them for help.

Apart from currently having no GP (something we’re hoping to fix after the bank holiday- the first GP surgery didn’t want to take me on as I was housebound at that point and although I’m not now I don’t trust them if I were to become so again) I feel pretty well supported. We need to make another appointment with my consultant now that I’m able to travel again, helped by the fact I’m now a lot closer to the hospital. When I see him I want to ask about suggestions on things to help my spasms, especially the ones that last for hours and stop me sleeping. My old GP was a bit uncomfortable prescribing anything for them before I saw the consultant, which is fair enough (he was happy to help with all the other problems I had).

Moving to the new flat has also helped so much. Despite not being able to use the toilet or shower (roll on May when they fix it for us) now I am able to sit in my wheelchair Johan is able to get me outside and down the ramp, despite the front door trying to kill him or me every time (it is heavy, and automatically shuts). If I were still at the old flat, I’d still be housebound because of the stairs. Having the freedom to go out again is making things so worth it for me, especially since I’m not experiencing any major payback up to now. I went to Taybarns in South Shields for Easter dinner last night and managed pretty okay, though we’ve worked out I need a wheelchair cushion. That was half an hour each way, plus an hour there so was out around 2 hours (actually, longer than that as I popped into the local shop on the way back and there was a wait for the Metro- make that 2 1/2 hours). I was okay other than a sore back and bum, which hopefully a cushion will help.

I’m also lucky in that I have reliable public transport. All the buses I use in the area are wheelchair accessible, and if they ever aren’t the bus company will call me a taxi (something that has been offered to use several times before when ramps have been broken, though we’ve declined and waited for the next bus as it was easier for us). I have a free bus pass with companion card that works for all of Tyne and Wear, County Durham and Northumberland (and there are accessible buses to most of those places). The Metro is very accessible so long as the lifts haven’t broken down, and if they have there’s normally an alternative route. It’s not perfect (my wheelchair slides a bit on the bus and Johan has to keep hold of it sometimes) but I’ve never experienced the problems that others have with bus drivers not stopping or being unwilling to put the ramp down or not asking pushchairs to move from the wheelchair space. In fact, it’s often us who say we’ll get the next bus if there’s a lot of prams or similar (despite the driver and passengers being willing), as where I live now there are buses around every 5 minutes and by the time prams are folded and I’m in place the next bus will have arrived, and there’s no point inconveniencing other people if it’s not necessary. Trains are a bit more hit and miss in that I’ve been forgotten when I’ve booked assistance before, but luckily Johan was able to find someone so I didn’t have to be carried off (I’d be unable to crawl).

I’m getting there. Johan was worried about my DLA until I reminded him that I was attending college and doing a lot more for myself back when the ATOS doctor assessed me, so I don’t need to report my improvement until I get better than I was then (which was around May last year). I’d love to be able to reduce my DLA level as being on high care, high mobility is depressing, as it’s hard to accept needing that much help. Until I can manage the nights without needing Johan (though he doesn’t always wake up when called) and can look after myself well enough not to need near 24 hour care and supervision, or I’m able to walk properly again, I’m on the right rates. The money does help a lot- being able to just buy a new wheelchair cushion as I need one now, paying more for takeaways as Johan is struggling enough with caring for me to add cooking on top (note to self: need to book the electrician to fit the cooker), knowing I always have enough money for a taxi if I need to get home urgently when out and about, being able to buy things for the flat which we only need because of my disability, paying towards the respite care where I go into a care home three times a year so Johan can have a break- all stuff that means I (and to some extent Johan) have as decent quality of life as is possible. We’re not rich but we’re not having to worry about money, and that makes things so much easier.

I am still very disabled. I can’t get anywhere by myself, as I can’t walk or self propel my wheelchair. I need a harness to hold me in a seated position in my wheelchair as otherwise I flop forwards. I need Johan to cut my food up for me. I need Johan to wash me and help me dress. I need him to help me with my medication and with my wheat bags to help me manage my pain. I need him to read my letters for me and help me understand things. My speech is unreliable. But I could (and have been) worse. And the fact I’m believed makes everything that much easier. It should be the case for everyone, and it makes me angry that it’s not.