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!
1 comment:
Comments from Sarah OT (@GentleChaos on twitter)
Nicely said Emma. I've only just read this blog entry and would like to share the following with other readers:
Further to your discussion re: Meet the OT (Naidex, NEC Birmingham 2011) I'd like to share that I did speak to the person who saw you, but I hadn't met her before. I too was looking for some independent advice, but found that that person didn't have the knowledge base to guide me (and was honest about this). I was asked if I had some information and contacts that I could share!
I was very concerned to hear that you were apparently asked why you'd made an appointment to see an OT rather than using me a resource. The bottom line was that the advice you were looking for was not something that I was able to provide, I'd love to have been able to help out..but I couldn't for the following reasons:
1) I don't have the specialist training or experience to advise you on the areas identified.
2) My knowledge of services for adults (particularly in the local area)is actually not as up to date as yours! I had only recently returned to work after a long break (2007-2010). In many instances you've guided me.
3) I have recently experienced serious changes in my physical health which have impacted on the way in which my disabilities affect me. I am currently not 'fit for work' and am not in a position to offer professional advice to any person at this point in time.
There's more though isn't there and it's a biggy:
4. Even if I did possess the necessary knowledge, skills, and experience to provide you with advice and services and was in a position to be at work, I still personally wouldn't be able to work with you because we're friends. It's written into the Code of Ethics and Professional Conduct that I must follow. (See: http://www.cot.co.uk/sites/default/files/publications/public/Code_of_Ethics_2010.pd Section 4.2, Relationships with Service Users)
I have an OT friend who works at the local NHS wheelchair service. Although my friend would really love to sort things for me, she can't because of our pre-existing close personal relationship. I therefore see one of her colleagues.
It's really good to hear that you're now on the waiting list for a neuro physio assessment and that other matters seem to be moving forwards.
Best wishes,
Sarah
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