Category: Physical Disability

Danni

Ambulances and Doctors

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

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.

Danni

Okay Body, You Win

Autism, College, Computing, Danni, Interface, M.E., Physical Disability, Real Life

Since Monday, I have finally realised that yes, I am actually ill. This may seem silly, but even though I’d accepted that I had M.E. and that it was affecting me, I wasn’t accepting just how ill I was, so still trying to do things I really shouldn’t be doing. I’ve learnt my lesson.

On Monday, I went to college. I vomited on the bus on the way there, as sitting up for more than 10 minutes = bad idea, and motion on top = even worse idea. Turns out other bus passengers are either disgusted or concerned when someone is throwing up in front of them. When I got to college, I lay on cushions on the floor of the chill out room as I couldn’t do anything else, and did not make it to my lesson. It was the first time anyone at college had seen me that ill, though it’s been my normal level for the past month. I went home in a taxi about 2 hours later, and was vomiting in there, too.

Tuesday I had an appointment at hospital about my teeth. Got there on time, went for an x ray then had to wait nearly 2 hours to see someone. If I’d known I’d be waiting that long I would have cancelled the appointment. When going through the list of medical issues, I finally realised just how bad I’ve got. Had any blackouts? Yes (once just after using the commode while having a bad day, the other time after trying to sit up in bed, also on a bad day). Any seizures? No, but I get jerks in my limbs that can throw me off the bed, as well as muscle spasms and milder jerks in my limbs that last for hours (and can jerk me out of my wheelchair, with the seatbelt on). Dizziness? I can’t remember the last time I wasn’t dizzy, but it can get really bad if I sit up, even on normal days.

I managed to contain the vomiting on Tuesday by swallowing it. Not nice, but I didn’t want to upset any other bus passengers. I’d also lost 4lbs that week, as I found out at Slimming World on the Tuesday morning (too ill to go really, but I was still being stubborn). That was in the week I wasn’t really following the plan.

So what’s come out of this? I checked where I am on the AYME functioning scale again. Answer: around 10-15% normally, lower on a bad day. No denying I’m severely affected any more, though it’s still hard to accept. When I was going out, yes I could do it, but I was trying to ignore how ill it was making me. I’ve asked how to join the SAMs (severely affected members) list at AYME,

I’ve told my tutor that even distance learning isn’t going to be possible, as I’m just too ill. I can’t even concentrate on a TV show all the way through without it making me more ill, so trying to study would be far too much (not to mention I’ve already fallen behind and not heard from my lecturer about what I’ve missed). So I’m going to be withdrawn from the course. I’ve also let the Interface students know via the Facebook page. I’m really going to miss college, as it was the last bit of normality in my life, but I need to keep what functioning I still have.

I’m also putting Slimming World on hold, at least for now. The meetings are making me more ill (as much as I didn’t want to admit it) and trying to follow a diet while spending so much time nauseous is probably not the best idea. Also, since coming off the quetiapine my appetite has reduced drastically, so I’ll be able to lose weight just be being sensible with what I eat. I’m also not going to pressure myself to lose weight- I just don’t want to gain any. I’ll be weighing myself at home every Tuesday morning on the Wii Fit to monitor it, and will change what I’m eating if I start gaining, or losing weight too quickly. I shall be emailing my Slimming World consultant after I’ve finished this blog post.

I’m also not going to be having any more baths, at least until the bath lift is fitted. I’ve been stuck once, been close a few more times, and it’s not worth making myself ill over. We tried washing my hair in the sink, but I’m too tall to make that work, so I’ve bought an inflatable hair washing thing for use on my bed. Bed baths are also a lot less tiring than washing in the bathroom, so it will be better overall (I still get exhausted when trying to do it myself, though).

No more going out unless it’s necessary. I’ve a doctors appointment on Tuesday, so will be going to that. I will also be going to the hairdressers next week. This may not seem necessary, but it’s been over a year since I last got my hair trimmed, and getting it done will make it easier to brush. It will also allow me to get my hair washed outside of bed :p Today nice Icelandic carer put my hair into a French plait, which keeps it pretty tidy even spending 22+ hours a day in bed.

I’m also slowly compiling a list of all my current symptoms, that I’ll be giving to my GP and consultant. Hopefully they’ll have ideas on how to deal with some of them, but if not, at least it will mean they’re aware of them. I’m also trying to figure out the baseline for activities, but this is hard as it’s in direct competition with my problems with transitions (if I try and stop an activity before I’m ready, then I get incredibly anxious and may panic, which uses more energy than just continuing the activity for a bit longer). I have made it so I’m only sitting at my computer for an hour at a time, maximum, and reminding myself after half an hour and 45 minutes that I’ve only so much time remaining. That worked well today- came off after 45 minutes because I’d reminded myself after half an hour, and I was at a good stopping place in levelling on my mage in World of Warcraft 🙂

I’m not doing so well on the getting to sleep at the same time every night, but I’m less worried about that. I managed 12 hours yesterday (from 1am to 1.30pm, with a half hour dozy resting period when the carer arrived at 10am) so it looks like I can sleep naturally. It does mean that it’s 2.08am now though, and I’ll probably not be going to sleep before 3am. Oh well- one thing at a time.

Danni

Bad Weekend

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

So Thursday. CFS clinic then colposcopy then flu jab. In the CFS clinic, we agreed I’d try and find a baseline for all my activities. This is going to be hard, as on good days I can do most for quite a while, then on bad days I can’t do most of them at all. I will give it try though. The physiotherapist also wants me to split up my high activity stuff with more low activity (as resting isn’t restful for me at all) which is also going to be difficult, depending on the activity. I am working on it.

The colposcopy was very painful, but it turns out everything is fine. My cervix is perfectly normal for a woman of reproductive age. I also got to see it on the screen, which was pretty cool 🙂 I now have to make an appointment to get my coil changed, which I’m really not looking forward to.

The flu jab hurt. I also had to be very brave and not make a big deal of it, because Johan was petrified, even after taking diazepam. It took him 15 minutes to get his, but he did it, and I’m very proud of him. My left arm has been very sore since.

I was out in my wheelchair for about 7 hours on Thursday. I can manage sitting in it for about 10 minutes before getting worsening symptoms on a good day. It is too upright, and even with the headrest I struggle to remain sitting up. I also ran out of nefopam completely on Thursday, so had to swap to tramadol (and I couldn’t take any more quetiapine). It was a very long day.
Friday I was really ill. Even with the antisickness tablets, I was vomiting everything I took, then vomiting bile. I was intolerant to light and noise, so spent a lot of hours lying with my eye mask and ear defenders on, hoping to die. Oh, and my review with my social worker and the care agency was that afternoon. Trying to explain what was going wrong while trying not to vomit or appear too ill was exhausting, and it didn’t really work that well. I will have to email my social worker to tell him everything I forgot to on Friday. Also on Friday was my friend Kate’s fundraiser for a new wheelchair. I really wanted to go, but was no way well enough, so Johan went by himself. He enjoyed himself, it was fun, she raised lots of money towards her new wheelchair, and Johan won a Segway experience in the raffle 🙂

Saturday I was a little better, but not much. I stopped vomiting, and ate a few things. Still had to nap, and spend a lot of hours with eye mask and ear defenders on. I was on Twitter when I could be, but I was too hot (the weather has been rather summery here) and felt just rotten. The karaoke in the pub next door didn’t help either. On the plus side, I was well enough to watch Doctor Who, which I really enjoyed.

Today I have been a bit better. Even managed a bit of time on my computer (my computer chair is more supportive than my wheelchair, and it reclines, so I can manage longer before feeling ill). Also managed a bath, and got dressed. All of this with Johan, as wasn’t well enough at 10am when the carer came. We also cancelled the bath call for tonight as I’d already had one and it was making me very anxious. I did get a bit emotional, but that calmed down after I’d remembered to take painkillers. Johan made me roast chicken for my tea, which was lovely. Tomorrow I go back to my normal food, as I’ve just been eating what I want the last couple of days. I am worried about Johan though, as the sertraline is making him exhausted, and he’s too tired to even do things he enjoys. It’s also making it harder for him to care for me.

The distance learning has been sorted out. I am to go in one a fortnight, then keep up to date by talking to my lecturer in between, probably using Skype. This is good, as I should technically be able to manage it, if I get back to the same level of functioning as I was last month. The only problem is I’m meant to be going in tomorrow, and that means sitting in my wheelchair for 6 hours. I’m not sure I’m well enough, and the only other option is withdrawal. I’ve also not done any work the last couple of weeks, which also isn’t helping much. I will see how I am in the morning.

Danni

Doctors and Things

Danni, M.E., Physical Disability

Yesterday I went to see my GP. He is very nice- he gave me my diagnosis of M.E., understands it well, and treats me like an equal in my treatment. I find it pretty easy to talk to him, which is awesome. Anyway, I am changing my medication. I am coming off the quetiapine as quickly as I comfortably can, and replacing the nefopam (which is unfortunately no longer strong enough to even take the edge off really) with tramadol. I also have amitriptyline, which I will be taking if the tramadol by itself doesn’t help much. This means I have a massive pile of pill boxes next to my bed, as I’m still taking nefopam until I’m off the quetiapine, and also have proclorperzine as an antisickness tablet, and lanzoprazole for the heartburn and things, and to protect my stomach from ibuprofen when I take that.

On top of this, he is going to contact my social worker about the carer situation, and write to the council to support my housing application. Johan had an appointment with him straight afterwards (he likes the same GP, plus it makes it easier with issues that involve both of us) and he’s been prescribed meds to help with his anxiety, and diazepam to take when he’s having his flu jab. The GP (I really need to think of a nice name for him) also wants me to have the flu jab this year, because of how ill I am.

So, last night I didn’t take any quetiapine. I slept very little- mostly in 20 minute bursts, between 3am and 8am. This was expected, as I’ve not tried to get to sleep naturally for a few years now (the amitriptyline may also help with that, if I need it). Tonight I plan on taking a half dose to try and stave off the worst of the withdrawal effects, then see how I am tomorrow night for whether I go without or go half dose again.

In good news, we were able to have sex for the first time in months last night. Because of how ill I’ve been, not being able to have sex has been frustrating for both of us. We have worked out a relatively low energy position, though, so hopefully we won’t have to wait so long next time 🙂

I am feeling rather crappy today. I think it’s partially overdoing it yesterday/last night (as awesome as it was), partially that I have a cold and also because it’s way too hot. Hasn’t the weather heard that it’s autumn now? 😛 I am not too bad though, considering, and now I’ve stopped rationing the antisickness tablets and painkillers (I’m hoping that if I keep taking them they’ll help a bit, until I can swap to tramadol) I’m feeling better than I otherwise would have.

Tomorrow I have two appointments. The CFS clinic in the morning, where I get to tell them the stability I had last appointment has gone and I’m also in the middle of changing meds, then the colposcopy clinic as apparently my cervix looked abnormal when I had my smear done (though the actual result came back fine). It is going to be a long day, especially since I’ve not been doing overly well in the sitting up department. At least I’m not attempting college this week.

Danni

Random Post about Energy

Danni, M.E., Physical Disability

I am meant to be sleeping, but instead my brain is going over lots of lots of different topics (also, my night time meds haven’t kicked in fully yet as I took them late).

One of the main symptoms of M.E. is fatigue, tiredness, lack of energy. All those words don’t really describe what it’s like, but it’s late and I can’t think of better ones. Anyway, I have been overdoing it the last few weeks. Not just in the “one event so I crash” way, but also by doing too much on a daily basis so slowly my symptoms and illness get worse.

The main culprits are sitting up and playing World of Warcraft. And that sucks.

I really enjoy playing World of Warcraft. It’s a game I started playing before I got ill, and that shows because I’m still able to play it to an adequate level, even though I’m pretty ill and struggle to learn anything new. It does take a lot of mental energy though, especially for dungeons or raids, both of which I’ve done in the past week. I enjoyed them- they were a lot of fun. But it’s also made me mentally exhausted, which means that I’m finding it hard to find the right words (especially for verbal speech), remember stuff, and to concentrate on anything. I really don’t want to give it up, but I do need to cut out the dungeoning and raiding, which are some of my favourite parts, as it’s when I get to play with my friends. My other problem with it is I spend too long at a time playing it, which also makes me worse.

Sitting up is a difficult one. I feel a lot worse sitting up than I do lying down (or even in a propped up position in bed). I get dizzy, feel more nauseous, my back and neck really ache, and it’s painful. It’s also the only way I can do anything constructive. Sitting up in my wheelchair lets me go outside. Sitting up at my computer lets me play games, which are an awesome distraction (as my laptop can’t handle them). I’m not yet too ill to do either of those things in moderation, the problem is I do them too much, then I get more ill. I’ve been trying to ignore as many of them as I can (only way I can cope) but some of them are difficult to ignore. Like spasms that mean I can’t use my hands, or the inability to move my arms or legs, or choking every time I try to drink water. The pain, the nausea, the weakness, the dizziness I can normally block out for a while (had a ton of practice of blocking out bad feelings as a kid) but those ones I can’t.

Trying to figure out where I am in terms of the severity of my M.E. is hard, especially because with the blocking stuff. I can’t walk. I can stand for a few seconds, sometimes. I’m in agonising pain all the time, but at the same time I’m able to deal with it, at least temporarily. Oh, and I have to spend most of the day in bed, or I crash. So that would mean severe, yes? Except I’m not completely bedbound, and not always housebound. I can go out whenever I’m well enough to sit up, even if the very act of doing so makes me worse. And I even made it into college a few days this month, even if that has made me worse overall and I’m now doubting my ability to even complete the course at home. In the next week I have two days of going out: a doctors appointment on Tuesday morning, and on Thursday I have the CFS clinic in the morning and a hospital appointment in the afternoon. I’ll be able to attend all those things, so I must not be more than moderately affected. But then I can’t hold a toothbrush for long enough to brush my teeth, and I can’t lift my arms high enough to dress myself or wash my own hair. It’s so difficult to judge.

I know there are a lot of people with M.E. who are a lot worse than I am. I don’t want anyone to feel sorry for me- I know things can be a lot worse. At the same time, I think I’ve been trying to kid myself that I’m a lot better than I really am, and that’s hard. I don’t want to admit how bad I am now. I’m so good at ignoring how I’m feeling that the only way I can really tell most of the time is if I make a conscious effort to find out. And then I don’t like what I see.

I know I need to rest more, but I don’t know how to rest. Even when I’m trying to rest, my brain becomes hyper aware of everything going on around me, and I actually even less rested afterwards than if I spend the time reading Twitter. That’s something I’ll speak to the CFS clinic about on Thursday.