Positive steps

Well, maybe I shouldn’t say positive steps, because the steps are still decidedly dodgy, but I do feel I’ve been making progress in terms of treatment.  In the last 2+ months since I updated my blog I had another neuro rehab session, which again was really good, although quite punishing on me.  I’d felt I was struggling to complete all the exercises every day, but it turns out I wasn’t supposed, but rather I was supposed to do a couple from each section, and chop and change what I do each day – makes it far more doable, or so I thought!

I’ve also been seen by a consultant from the pain team.  It was a very thorough review of what had been happening, how I was feeling and what I was trying to get out of the service.  He was relieved to hear I wasn’t expecting a miracle cure.  His first action was to increase my duloxetine dose.  Evidently the dose I’d been on is regarded as sub-therapeutic – designed to determine if you are tolerant to the drug.  Having decided I’m fine on it, he doubled the dose, but advised I didn’t start it until the weekend in case I was left feeling very groggy in the morning.  I’m definitely finding it a bit more of a struggle to get going in the morning, but by the time I’ve had breakfast and got ready for work I’m generally ok.  This has unfortunately had a bit of a knock-on to me doing my physio exercises as I struggle to get them done in the morning, and by the time I get home in the evening I’m pretty wiped out.  I had another physio session this morning, and I’ve been booked in for weekly gym sessions until Christmas with one of the physio assistants to give me a bit of dedicated time on some the exercises to see if we can make progress with the balance, and then I’ll have another assessment with the physiotherapist herself to see how things are going.

I’ve been mulling over what to do about my follow-up at Queen Square, with the appointment in December now getting close.  The idea of surgery at this stage doesn’t seem like the right thing to be doing, particularly as it is early days with the pain team.  It feels like going to London for another follow-up to probably just talk about how I’m getting on with the pain team is going to be a waste of my time and a valuable outpatient appointment slot, not to mention the cost of us travelling there.  Having given it a lot of thought for several weeks, I took the decision today and rang to discharge myself from Queen Square.  If things change, I know I can contact Mr Sepahi again and go from there.

One of the other things the pain consultant proposed was to talk to an occupational therapist about home and work requirements, work-life balance etc.  He seemed to think the number of hours I do is excessive for someone with my conditions (no comments thanks family members reading this!) and so talking to an occupational therapist might help me at least manage how I do my hours better.  Unfortunately they are without an OT at the moment, so he has put me on the waiting list to see their clinical psychologist, but also suggested I talk to OT at work.  I emailed them earlier in the week and had a call from the Trust’s Accessibility Disability Officer yesterday.  Strangely we both had some time free yesterday afternoon, and she came and did a really thorough assessment of my workstation, chair, me etc and offered some really good advice.  She is going to get a chair specialist to come and assess my office chair as she thinks that, whilst I have a good chair, it is perhaps not suitable for my needs.  She is also going to refer me to one of the OT case managers at the hospital to see if there is anything else that they think might help.