Today I escaped both my bed and the flat and went outside 😀 It seems that now I’m finally over the cold that was causing me to relapse, I’m not too far off where I was in April before it. Still resting lots and taking it pretty easy, but this is good 🙂
Last night Johan washed my hair, and then I got dressed for my doctors appointment this morning (it may sound a bit odd, but it was a t-shirt and leggings and it’s because I need at least a few hours to rest after getting dressed). I’d slept a few hours yesterday evening (about 5pm-10pm, after waking up at 1pm) and so didn’t get to sleep until about 4.30am, then woke from a nightmare at 5.36am (I looked at my watch) :(. Managed to get back to sleep and was in a weird but not as scary dream when I woke up with the alarm at 7am. (The dream had something to do with having the wrong router and it was showing up on the telly where an episode of the Simpsons was playing- weird but not massively scary :P).
I gave Johan cuddles to convince him to get out of bed, then we got ready and left and actually arrived early! Johan’s appointment was 8.30am and mine was 8.40am, as when Johan made them he didn’t think I’d be well enough to go (I was being stubborn though :P). Saw the doctor who was the nice one Johan saw the first time, who apparently is rarely there. She is brilliant- wanted lots of details to help Johan (he’s being referred back to the psychiatrist to help stop him getting so depressed again, as she doesn’t feel primary care has enough knowledge on how to deal with his particular type of depression), then I said hello (she asked if it was that type of appointment when I told her I’d not been well enough to go to the last appointment either), asked for some more tramadol as I’d been taking loads during the relapse, and for some lactulose to help prevent me getting as badly constipated again, which she was happy to do. We also discussed my M.E. care (she’s impressed that I get home visits- as am I) and how my consultant had been asking GPs for the numbers of M.E. patients a few years ago as he was wanting extra funding.
She also mentioned that she feels that GPs react badly to M.E and other illnesses that they can’t cure especially when there’s no-one more specialist they can refer to, but since they have my consultant in this area they feel better able to deal with it. She also said that’s probably why some doctors deny it exists, because they’d rather it didn’t exist than accept there was nothing they could do for it (even referring on to a consultant). That actually makes some sense, so I’m very grateful that I live in this area. I explained what the CFS clinic actually do and where they’re based (information she didn’t have) and then we talked a little bit about my oversensitivity to medication (Johan mentioned it first for the lactulose as I didn’t know dosages as only had it in hospital before, then I explained there’d been some research into it regarding autistic people and things which she was interested in).
I can see why Johan came home not anxious last time- she’s very friendly and professional at the same time, is confident in what she knows and also in what she doesn’t know, and wants to do the best she can for us. She’s also put in a referral for Johan to get a social worker to help him with his autism related issues, as mine can’t do much for that.
Afterwards we went to the chemist to pick up my prescription, then went into Gateshead as it was nearby, we needed some toothpaste (and a drink to take a painkiller with as we’d forgotten to give me one before I went out- whoops) and I wanted to go into a shop! Went into Wilkinsons, I looked at makeup for the prom (and decided I best go back with my sister Meggy who is doing my hair and makeup to pick what I need, as mine has gone walkabouts), picked up the toothpaste, facecloths (we needed a couple more) and a drink, then went to the checkout where Johan’s card was declined and he’d forgotten mine (and only had about 40p in cash on him :P). We figured out why it had been declined, said we’d come back and went to the bank.
It turns out the bank hadn’t changed his address properly and the new card for his new account (he upgraded his to a proper adult one :P) had been sent to the old address. Not sure it wasn’t picked up last time he mentioned he hadn’t received the card (he’s asked twice) but the man there found the problem, fixed it, ordered another new card to be delivered to the place we now actually live and gave him some money (out of his account). We then went back to the shop to pay for our stuff, I took a painkiller (I was really feeling it by that point as it had been about 1am when I’d last had one and it was now 9.30am) and we got the bus home.
The carer was due at 10am, but we got home at 9.55am. The woman with the paperwork arrived just after 10am, and started on that while waiting for the carer. Everything was fine and we realised that things were different almost straight away. I’m going to have one main carer, and then they’re going to get a couple of others to meet me and to be available for those times the main carer isn’t working. That means only 3 people to get to know! There may be emergencies when they’ll need to bring in someone new but they try to avoid that and stick to those three. Then the carer who is going to be my main one arrived, and we got on straight away 😀 She was late because she’d just walked about a mile, which is fair enough (we’re fine with lateness, it’s earlyness that I can’t cope well with).
New carer is American, very eccentric, and has a very similar sense of humour to both me and Johan. The woman doing the paperwork (who is also a carer) was very lovely as well, but she was a little bit left out as the three of us started talking about all sorts of things. We did all chat about how the agency works a bit, as we explained what happened with the old agency (they were horrified, and the paperwork carer was wondering how they managed to run anything that way) and they were able to reassure us that they weren’t like that. They’d already been told a bit about me by my social worker (including the main carer!) and we were able to clarify things. We let them know we’re very flexible on times so long as we know in advance, and main carer said she may need to move the morning call a little earlier because she sees someone else just afterwards and wants to get there on time. Okay with us 🙂
My social worker did get the timings a bit wrong (morning calls were meant to be 45 minutes, but are now an hour, and evening calls are meant to be 30 minutes or 1 hour depending on if it’s a “bath” night (we no longer have a bath. Boo!) or not but is now 30 or 45 minutes, but we’ll work with that now and we can change them if it’s not working right.
When the paperwork carer was finished, the main carer wanted to get started. As I was already dressed and stuff, there wasn’t much for her to do except brush my teeth (as Johan is too scared to do it and I’m not able to, it had been a while) so she did that then we chatted a bit longer. In the end we had to remind her several times that she had another client to go to for 12pm (only around the corner, but she kept chatting longer). She understands that I might not always be up for talking and that’s okay with her. She did listen to what we say and wants to work with us, and says she looks forward to being here. She comes back tonight between 7.30pm and 8pm, and I’m actually looking forward to it 😀
It has been a very good day. The carer situation seems a lot better than than the last one, and they understand our requirements and are quite happy with them. The doctors went really well and according to Johan the other doctors he has seen there are really nice as well. We’re on the way to getting Johan the help he needs and I feel like they will help me if I need it. I got to go shopping and go on a bus and though I’m in bed now I’m very very happy. We’ve also bidded on a tiltable wheelchair on eBay which ends tonight and if I win that going out should be even easier (my friend Elmo found it for me- he’s awesome).