Penguins and Pyjamas and Sofas

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 šŸ˜› (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 šŸ˜€ 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 šŸ˜€ 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 šŸ™‚ Overall I’m not doing brilliant but I’m happy enough šŸ™‚

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