It's all gone to pot!


My apologies for being quiet over the last couple of weeks, I have been trialling my new drugs. They seem to be working very well now but the first couple of weeks I was knocked out by the drowsiness and nausea. They also seem to cause my heart to beat quickly and erratically, well a little more erratically than normal. However so far so good, so I am continuing to see if they can be a long term option. The extreme drowsiness that these drugs cause have meant that I have had a bit sofa time and have been binge watching scandal. As well as eating a lot of the wrong things, why is it you crave chocolate or crisps instead of fruit and lettuce. Although I did have what I like to refer to as the most middle class munchies ever, banana yoghurt and granola, though weirdly banana yoghurt is ridiculously hard to find. This trial is for the overall pain that I feel from the ehlers danlos, rather than to help with the heart problem. We have now reached the end of the road, in terms of the heart condition there is nothing left to try.

Also this week I have found out a little more about my spine. While I haven’t yet had a full spinal scan, from top to bottom as it were. I have had the cervical and lumber regions scanned and we know the lumber results, Pars defect and slipped disc. The cervical spine results are early osteophyte formations at one joint and irregularity and hypertrophy noted at two joints. Which is not great, combined with the report from the specialist physio that says I have a flat thoracic regions – apparently that’s not good thing. All of this means that I will talk it through with my pain management specialist and then I guess see a spinal surgeon to work out my next steps.

My husband and I went to the Mobility roadshow at Silverstone this weekend, which was good and very useful as I am looking to change my car and get some adaptions done. Yes I have finally decided that I should move on and give up my car, going for a more sensible option. Not that mine isn’t sensible but I can’t fit my wheelchair in it, without taking it apart. So the Mobility show was useful but not how I envisioned spending my 5 year wedding anniversary. I did get to drive Silverstone track which was cool, unfortunately they wouldn’t let me take my car on the track or take the test drive car over a set MPH but all the same it was good. The exhibition itself was good and showcased all the different adaptions that can be made to cars. There was also a preview of a very space age looking car which is yet to launch in the UK that allows for a disabled driver to back their wheelchair into the car as the whole bonnet and roof lift up. There were also next generation electric wheelchairs, Segway chairs and some meaty looking off roaders.

The other exciting news for this week is about this blog. My blog post ‘Is today the day?’ won a competition with telmenow.com and has been published on their website https://www.telmenow.com/news/ they have also expressed interest in publishing more of blog work. The Mighty, have decided that they would also like to publish that post as well as my more recent travel related one. They have also expressed an interest in publishing more of my blog posts. So watch this space for more exciting news about future publications, who knows maybe a book deal is next :-).

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