Yesterday (Thursday) morning the district nurse came out at the request of my GP (if I’d been able to phone up I could have asked myself but I can’t and my carer didn’t get a great response last time). She was here to discuss getting a hospital bed and my continence needs. I liked her. She came while I was asleep (at the same time as my morning carer) and understood when I explained I’d not slept well thanks to the heat. She asked mostly closed questions and was able to figure out the answers from what I was saying (my speech at the moment tends to go a bit rambling all over the place and I say a lot of wrong words and stuff).
She agreed I should have a hospital bed, and an alternating air pressure overlay mattress. Since that was what I wanted, I’m very happy with that. We told her I was going into respite for the weekend and somehow she’s managed to organise the delivery of the bed plus a cantilever table and a slide sheet for Monday afternoon. She thought it would be a good idea to get it delivered while I was in respite as it meant that we wouldn’t have to worry about where to put me while the beds were being sorted. Johan is going to get the double bed as soon as his room is sorted enough and I’m going to get a daybed frame for the single mattress for the living room to replace the sofa. All planned and all good.
Continence-wise she’s ordering some more absorbent pads for me. She also asked me if I’d thought about catheters, and when I mentioned I was worried about infection she suggested a suprapubic one might be best. I’ve looked into it and if I can tolerate the procedure to get it fitted then it might be a good option for me, so I’m less sweaty and sore from the pads. I’ll still need something for bowel movements but we can discuss that later. It’s something that I’m considering, anyway.
All in all it was a good visit. I’m amazed she managed to get the hospital bed sorted so quickly (luckily they had a suitable one in stock) as apparently it normally takes one to two weeks. I’m so used to waiting months for anything that it feels really weird for things to be moving so quickly.
My social worker and OT are coming out next Thursday to do a full assessment. I’m hoping for a hoist, a shower seat and to see if there is any other equipment that may be able to help me. The district nurse is going to come back out the Wednesday after to see how it went and if there’s anything else she can do.
Johan is going to London this weekend for some much needed respite (and to see friends). He’s not been doing so well recently but hopefully the break will help him. Originally Becca was going to be looking after me but she got an infection and is rather ill with it. Luckily we still had most of our respite left (until my care package changes we’re getting three weeks a year, of which we’ve used about 10 days so far) so I’ll be going into the local care home I went to in February from Friday (today) until Monday. Hopefully it will go well but I’m a little sad I’m not going to a care home where I can get a bath or shower (last time they didn’t have a suitable seat for me as I can’t sit completely upright). Indigo Jo has said he’ll try to come visit me which would be nice as I’ve not met him in person yet. I’m hoping that since they’ve got a hoist I’ll be able to spend some time in my wheelchair and maybe even go out for a little bit, as I’m doing better overall now than I was in February.
I’m trying to think what else has happened since last time I posted an update. I turned 27, and had my birthday party today (my birthday was 18th June but the party was delayed until I had cake). The party involved me and Johan cuddling and eating cake. I think it was a great party other than Johan not feeling great. I got a good deal from Virgin Media including a second box so I now have telly in my bedroom with all the channels except Sky Movies (we have Sky Sports with HD as Johan wants to watch the cricket, and he’s been watching a lot more telly since). I’m currently using my old monitor as a television which is okay except it doesn’t have a remote and I can’t change the volume. I’ll be getting a new television at some point but it’s not a major priority since I have other things to save for (like two Playstation 4s).
My GP came out and is doing lots of stuff for me. She’s given me medication to try and make my digestive system actually digest stuff, which is helping (it’s also meant to help with nausea but doesn’t work as well for that). She’s looking into POTS as it’s quite likely I have it (the intolerance to being upright and my heart rate going mad when I try say it’s quite likely, and I’ve had symptoms since I was a teenager). We’ve agreed I’m more bendy than average, especially my fingers, but not enough to really indicate EDS. That’s fine as I wasn’t sure how bendy I was in comparison to the norm and was not sure about it.
I’ve not been playing very much World of Warcraft the last week or two. I have got into gold making but the heat is making it hard for me to concentrate and even the basic stuff like dailies is too hard right now. I’ve been playing a bit of Scribblenauts Unlimited though and I picked up a game or two in the Steam sale so when I’m up to it I have stuff to play. Mostly I’ve been watching telly, and Star Trek: Deep Space Nine and Orange is the New Black on Netflix. I’m also slowly catching up on the YouTube videos I’d missed while too ill to watch them, such as TableTop. I’m liking being on my computer. I also go on Tumblr quite a bit.
I’m really positive about stuff now. My M.E is still rather wobbly (I’m improving in some areas and getting worse in others) but my mood is mostly good and I feel like even if I don’t get better or even get worse, I can still have as reasonable quality of life. I’m worrying about Johan and need more care but some of my health stuff may be at least partially treatable, most of the time my pain is bearable, and being bedbound isn’t the worst thing in the world (and will be even easier once I have the hospital bed). I still want to improve and be able to do stuff, but it’s not the end of the world if it doesn’t happen. My life is very different, but it’s worthwhile.