Author: Danni

Haven’t got the transport situation sorted. Will just have to see what happens tomorrow. Hopefully I’ll be well enough to get up the stairs. If not I guess I’m camping somewhere :p

Today has been rather mixed. Woke up this morning with at about 6am (went to sleep around 9pm last night so that’s actually rather normal), used the commode, stood up for a few seconds, and felt really nauseous. I also had the most horrendous headache, and was completely intolerant to light (I couldn’t cope with the small LED lights on mine and Johan’s computers). I tried to drink a small amount of water to ease the headache, thinking it was dehydration, and started vomiting. By 6.30am I had to wake Johan up because I’d run out of sick bags. I managed to get one of my antisickness tablets (which dissolves between the gum and the lip) around the same time, and by 7.30am I’d stopped being sick long enough to take my new antisickness tablet. Luckily the new one works well, though it does make me drowsy, so I had a nap from 11am-1.30pm.

I had set an alarm for 1.30pm as Gateshead Carer’s Association were coming out at 2pm to see how they could help Johan. He was also asleep (silly sausage didn’t go to bed until after 4am, and then I’d had to wake him up a couple of times to help me with taking meds and changing pyjamas and things) and didn’t wake up until 2.05am. Luckily the people were running late so it was okay. They were both advocates, and they were very helpful, and are going to help Johan with sorting out a care home and talking to my social worker and stuff. They’re also going to provide him with information about some of the carer’s groups he can go to, which will be good for him.

This evening I felt quite a bit better so had a bath (yay!). Johan changed my bedding as my aim wasn’t brilliant this morning, and he helped me into my new penguin pyjamas, so I’m all clean. Lovely Icelandic carer came a bit later, and she brushed my teeth and sorted my hair out, putting it into another French plait (until I had my bath I had still been wearing the one she put in last Wednesday). Since then I’ve managed 20 minutes sitting at my computer, and have just been doing random stuff on my tablet. Will be going to sleep soon as the hospital appointment is at 10am, and that means leaving at about 9am tomorrow. Eek. 

My toothache is now just a dull ache, rather than a sharp, unbearable pain. This has meant my mood has improved a bit and I’m coping slightly better.

I’m still panicking over things though. On Wednesday I have a pre-assessment appointment at the hospital for the operation to remove my bad tooth (which is scheduled for 2nd December). It’s been bothering me for a year now, and it’s at times making me suicidal when the pain gets unbearable. It definitely needs to come out, as soon as possible. The problem is I can’t get suitable transport to (and more importantly from) the appointment. At the moment I can sit in my wheelchair for about 10 minutes before I start getting increased pain and my muscles start failing me. If I try to remain sitting in my wheelchair, I flop over at the middle because my back just won’t keep me upright anymore. I also lose the ability to move my limbs. This happened on Thursday when I went to see the GP- a local appointment for about 30 minutes including travel time. Johan had to drag me up the stairs, causing us both a lot of pain and danger (as I kept slipping and my leg jerked, nearly kicking Johan down the stairs). I’m still nowhere near close to recovered from it. We both know we can’t repeat that, as there’s too much of a risk of one or both of us getting seriously hurt.

The normal patient transport ambulance requires me to sit up in my wheelchair for the entire journey. Not only that, it will go around the world picking up passengers before getting to the hospital, so what is a 20-30 minute journey by taxi will take at least an hour. The appointment itself is meant to last an hour, according to the letter. Then there’s the travelling back, plus any waiting time (which can be hours). I can’t sit up that long. Ideally, I’d travel lying down, which would mean I might even manage sitting up for most of the appointment, but apparently that’s not possible. Instead, I will be getting a taxi and lying down in the back of that, as well as is possible while wearing a seatbelt. Which is fine- I’ll get there, have the appointment and ask if there’s a floor somewhere I can lie down on if I need it (I have lost all embarrassment at lying on the floor). Then I’ll get a taxi back.

Here’s the problem. I can get to the front door, but I won’t be able to get up the stairs. Dragging is not an option. Johan says I’m not allowed to sleep at the bottom of the stairs (and we do share them with our next door neighbour, so it’s not fair on them). Any form of lifting will require more people and equipment we don’t have. So I’ll be stuck. My question is this: who do we contact when this happens? Is it social services? Is it someone else? I know the ambulance service have a carry chair that will get me up the stairs (though they hate doing it as the staircase is very steep), but I don’t think it’s an emergency as such so I wouldn’t know how to contact them. My GP is the one who told me I can’t have suitable transport.

Any suggestions on who to contact (either before or when it happens) are welcome.

Pain is probably my main symptom of M.E, though it’s not the most obvious. I don’t show it most of the time, but I’m in constant, severe pain. Lots of things can make it worse, and painkillers and other stuff tend to only help a little bit. Most of the time, I cope. Not very well, as it makes other things harder to deal with, but I can normally get around it and maybe even distract myself from it occasionally.

I can cope with different types of pain differently, even if they’re the same severity. I’m not sure why this is. I can deal with pain in my muscles and joints pretty well now. So long as I’m not moving them too much, and I’m not overstimulated, I can manage the pain with some tramadol and the occasional wheat bag/penguin. If I can cope with it, a hot bath also can help (normally it’s other symptoms that prevent me from having one, such as muscle weakness and dizziness). Headaches I can also manage okay, though if it’s a migraine I’ll need to cut off as much sensory input as possible. I have a constant sore throat but the pain isn’t normally too severe so that’s not too bad.

There are two types of pain that I really struggle to cope with. One is toothache/earache (I normally get them together). Even though the level of pain may be less than that elsewhere in my body, I can’t cope with it. Tramadol doesn’t help at all, though ibuprofen does a little bit. This pain is distracting, and I can’t do anything. It stops me sleeping and makes me want to scream. I would do pretty much anything to stop it. It’s mostly caused by one tooth that’s been bothering me for a year now, and hopefully it will be removed next month. Because of my other problems, I need it done under a general anaesthetic, but I’m desperate.

The other pain I don’t cope well with is abdominal pain, especially if it’s on the left hand side. Again, the pain may not be that bad compared to that in my limbs, but I have much less ability to cope with it. I’ll be curled up in a ball, preferably with a wheat bag/penguin, and I’m unable to distract myself from it. Luckily I don’t get it that much now (I was getting it from taking codeine or morphine) but when I do, I know about it. Luckily tramadol does tend to help this sort of pain, as does buscopan.

Now, how to explain this to my doctors…