Wednesday, 26 August 2015

Summer update

It's been a while since I last posted.
Nothing has really changed. I am still having trouble with the battery flipping and the more weight I lose, the easier it catches when I turn over in bed, waking me up and I find that I subconsciously am holding the battery area, as I do when it flips. I am still suffering severely higher pain during my periods, mostly on the second day for a day or up to three. Sometimes this doesn't occur though.
I also seem to get worse pain without rhyme or reason. After a week abroad in which I had a pain free week. I didn't once get out my remote to change programs and didn't really think about it all much. But two days after returning, today I am in so much pain. I tried to ignore it but eventually it started making me feel sick, making me stop what I was doing completely and sit down for half an hour or so. The pain didn't ease, but the sickness did! So I carried on with what I was doing, as I do, to try and take my mind off the pain.
I still don't have a program that helps during this heightened pain.
At the start of the summer holidays, just past the middle of June, I had a voice mail message left from the pain clinic offering a date within a few days to be reprogrammed. As it was my last week of school, things were pretty crazy and on returning the call at lunchtime, I had to leave a message. I asked them to call back to confirm. They never did. I tried calling again but couldn't ever get through at the times I was able to phone. Since then I still haven't heard anything at all!! Disgraceful really!

I have a GP phone call in place next Wednesday lunchtime to get the sick note to allow me to work 3 days a week. Am hoping this all works out, as the GP I saw is not able to call me and has no appointments until 14th September!

So 9 months on, I am glad I have had the permanent stim but now accept that my life won't get back to 'normal', the way it should be. I realise that I need to fight to get appointments and reviews on my progress, as no one seems to bother creating appointments without me asking for them.
So my next step is to see my consultant again to discuss the prospect of another operation to sort out the battery issue, and to get an appointment to be reprogrammed in the hope of finding better program to help with the worse pain levels.

1 comment:

  1. Hi its Jacks, i was v interested to read your latest entry as theres just bits and pieces on the facebook group isnt there. Please keep writing cos its really helped me!
    Sorry you are havingso much trouble with the battery and hope you can get to seethe consultant to discuss what happens next etc. hope you dont have to go through another op but if thats the only thing that will resolve it then maybe it will be worth it.
    Also i really hope you can have a productive phone call with the dr and get your 3day week sorted for work. How ridiculous not being able to get an appoint till that long!
    It is very useful to read your feedback on the Stim too.
    Take care x