>Recent happenings and not so recent things I’ve forgotten to mention but occur to me now:
I’ve made some baby steps on the way to starting to lose weight again so I’m hoping the scales will start moving downwards again very soon! Specifically I’ve given up coke and chocolate again.
My leg is still nasty but is improving very slowly. I’m really glad they gave me more antibiotics after all because clearly they are doing something. Being on this level of antibiotics and having been on antibiotics for so long is making me feel a bit rubbish though! I’ve been resting a lot these last two days and trying to take better care of myself and as a result I’m not feeling as run down.
I was driving myself crazy trying to figure out if the Sertraline is helping me and not coming to any conclusions. It’s too soon to tell however so I’ve decided to (try to) forget about that question for now. I’m certainly no worse and feeling a little bit more positive for having taken control back. Equally I keep deciding that my spasticity is a little less with coming off the fluoxetine and upping the baclofen and then deciding that no, it’s not. I meant to ask my mum when she popped round this evening for her opinion but then completely forgot when she was here.
I am now on the waiting list for a neuro physio assessment, having been encouraged to ask for that following my free 30 minutes with a physio at Naidex. I’d decided not to ask for that as I didn’t think I had any options other than more baclofen and botox. More baclofen the GP can and does do and botox is not something I’m prepared to consider. But chatting to the physio was really good and it appears I have several other options I’d not realised I had. No idea how long the waiting list is though.
Meet the physio made staying overnight at Naidex and all the hassle that went on worth it. Meet the OT, not so much. She started off by commenting that she didn’t know why I’d bothered to make an appt as I had Sarah (@GentleChaos, who is an OT as well as a crip and who knows that OT I think) with me. Totally missing the point that Sarah’s my friend and I don’t want to make her my OT as well!! And then when I asked my question about wheelchairs she started trying to tell me I should learn to drive and then about places where I could get special wheelie clothing. Anyway, enough about Naidex.
Have been wondering about the possibility of going to Stoke for a day to visit some friends and revisit my old uni days haunts. Having looked at the train times however I’m sure it didn’t used to take that long and therefore having a rethink on the possibility… it’s not out but it’s more of a maybe than I thought. I’d like to go back to Stoke for a visit and we’ve been trying to come up with different things to do when we meet up (usually in Birmingham) which is what made me think of it. Looks like I might need to investigate some other options as well.. Not going away this summer but would like to have a couple of days out doing something different to usual.
Speaking of days out, I’m speaking at an event in Coventry on Tuesday and then one in London the Tuesday after. I’m looking forward to them even though the topic wouldn’t have been my first choice to go and speak about. Plus, it’s nice to be asked to something that hasn’t go to do with being a crip for once!
>I’m slowly getting over this UTI. I am however on my second type of antibiotics for it.
I was put on Nitrofurantoin on Friday. 100mg x 4 daily for five days. Normally people are given 50mg x 4 for three days but I warranted a double dose and extra days due to my history. You know it’s a bad UTI when the doctor takes one look at the sample and goes “yeah you’ve got a UTI my love” before he’s even stuck a test strip in it. Also, how fast did that strip change colours?!
By Monday lunch time I still felt absolutely shit and that was after 3 days worth. My back was really starting to hurt and I was beginning to panic it was going to my kidneys. Rang and spoke to the duty doctor. Switched me to Cefalexin 250mg x4 daily for 7 days on the assumption the Nitrofurantoin wasn’t working which surprised me a bit as it’s worked for me before. I have had a lot of it in the past although not for a good few years. I took another sample up. Don’t know what it showed but it still had the signs which meant the dr knew I had a UTI before he tested it on Friday.
I’m feeling a lot, a lot better since I stopped the Nitrofurantoin and started the Cefalexin. In fact I was surprised how quickly I started feeling better. I still feel totally washed out and tired. I made it sailing yesterday but it took sleeping most of the morning, going back to bed for an hour and a half rest in the afternoon and a very early night. And I only managed a very brief sail – when I came in they all asked what was wrong and didn’t I want to go out for longer?
Today again I managed some of my usual Wednesday stuff but it took staying in bed until the last possible minute, a long sleep in the afternoon and I’ll be headed to bed after Masterchef me thinks.
Logically I do realise that a lot of this has to do with going to Naidex last week. I didn’t drink enough one of the days (or rather I did but didn’t space it well enough to keep my bladder flushed out) and I got really tired which would have taken me a few days to get over and add in this infection and it’s just all worse for it. But I must admit to being really freaked out. I have a long and painful history of UTI’s and I’ve needed months of prophylactic antibiotics before to really break the cycle and totally clear them. And last year one went to my kidneys and I was sat with an out of hours duty doctor asking if I wanted to be hospitalised. I’m just hoping that this will be a one off and not the start of another lot of problems…
>Naidex was fun. If you’ve been following my twitter stream for the past few days you’ll hopefully know that. But you’ll also know there was lots of access related fail which made for stressfulness and made things difficult. And if you’ve seen my twitter stream today you’ll know that I woke up this morning to the realisation that I must have seriously misjudged my fluids yesterday and not drank/been to the loo often enough because I felt crap and possibly had a UTI. I’ve been to the Dr who has confirmed my diagnosis and given me antibiotics. Fully updating on who I met, what we did, what was fun, access fail etc will have to wait.
>I heard from the wheelchair engineers first thing this morning. They’ve made some adjustments my chair and got it working again by bending some frayed wires and reconnecting them (I think) but asked if I wanted the piece properly replacing. Baring in mind that they said “it could last a week or it could last six months” and the replacement part is much less than anticipated (as its a different part to the worst case scenario part they thought and told me about) I told them to go ahead and replace it. They’ve also managed to get the freewheel working again – it was just disconnected or had worked I think although how the hell that happened I don’t know. Possibly it was with all the getting lumped around on freewheel on and off of a ridiculously high taxi that only had a ramp and no tail lift. And they are going to replace my tyres.
It’s much less than I’d anticipated but it’s still going to be several hundred pounds. Before any parts have come or been fitted my bill is already over £100. As the guy said on Monday when he picked it up – it’s much less than a new chair. Add in the fact I had new batteries about six weeks ago and it’s likely I’ll end up having spent the better part of a grand on that chair this year. Thank God for DLA! But even that doesn’t go far… the work that’s been done already is more than a weeks worth of my DLA.
Unfortunately wheelchair parts aren’t like car ones where you order them in the morning and get them in the afternoon. These parts will take a few days to come at minimum, possibly even a week or more. It depends if the manufacturer has them in stock and I forgot to ask!
Naidex is in a few weeks. I’m going for two days with several people I “know” through twitter etc and I’m hoping to see a uni friend too. This year was going to be all about being one of the “normal” there and meeting some friends and giving some hugs. But my mum is now heavily suggesting that I go play with some powerchairs too… and I must say that is a very tempting idea.
Watch Out Birmingham! The Crips are coming! And this one intends to try ever single powerchair she can. Don’t say I didn’t warn you…