I know I missed a week in my posting, sorry about that but it has been a really tough couple of weeks. We moved house, difficult at the best of times but with EDS oh my goodness it was hard and I didn’t really do anything, we had removal men for the heavy lifting and moving. A combination of the move and the fact I had to come off my usual pain meds because of the bradycardia meant for a massive crash. I hadn’t realised how much the usual pain meds had been helping with the constant pain until they started to wear off, right in the middle of the move, so a combination of doing to much, exhaustion and the meds all caught up with me in a spectacular crash on Friday morning when I sat in bed sobbing for an hour unable to move. I managed to get an emergency doctors appointment – or rather my lovely husband did and we managed to get some breakthrough pain meds sorted as guess what, I had run out of those too. So after that episode I have had a long think about the medications that my pain management consultant suggested, I have also talked to my cardiologist about them and I think I am going to go ahead and give them a try. I need to be able to manage day to day and even with the pain meds the day to day is getting harder and harder. I am really struggling with walking and frankly l am looking forward to taking delivery of my wheels.
So I had the full physio assessment at the hypermobility clinic in London, though the journey took so much out of me I fell asleep in the waiting room – just hope I wasn’t snoring. I protect my joints and yes the wheelchair has been ordered. I went to see an amazing company how specialise in wheelchairs, called EPC in Hampshire, they were incredible and took a lot of time (about 3 hours) to talk me through everything and to design a chair especially for me, my needs and condition. I have gone for a incredibly lightweight self propelled option. Being a little bit of a control freak the option of someone pushing me around all the time was not high on my list. I do have handles for someone to push when I am tired but they nicely tuck away when not needed. There is also an option to retro fit electric wheels when the self propelling gets too much for me. Strangely I am actually quite looking forward to it arriving, I struggle with even the smallest of walks at the moment and it causes incredible pain from the waist down. I have osteoarthritis in every joint so I am assuming it is that, although I have to say the sciatica is getting worse as are my knees but I think I need to concentrate on treating one joint at a time. In writing this I have now realised that if I need to have the elbow surgery - yes I said if, don’t laugh!, but after that I will have a period when I will have to be pushed around hmmm L. Maybe I should use it as an excuse to lock myself in my office and get some PhD work done.
Having referred in my last post to the EDS story line in Coronation Street, it is now really annoying me. Izzy is using cannabis to help ease the pain, now this is not what annoying me, it is the way she is getting it that I don’t like. She is illegally buy cannabis on the street and smoking it. Now I know, because it has been offered to me that medical grade cannabis is available on the NHS in tablet form by prescription from a consultant. My pain management consultant and I have discussed it, I don’t understand why Corrie have written in a way that implies the help is not available and therefore has to be sought illegally – I do not think this sends a good message to people who suffer with this or any other debilitating condition. I guess seeing a doctor and getting a prescription to help just doesn’t make for good television.
I shall pop off my high horse now. On the whole it has been a crazy busy and really tough couple of weeks, I have had a lot more downs than up’s. However on the bright side I have had no emergency trips to hospital only a number of planned ones. I have seen, cardiology – had ECG and Echo all looking good, the hypermobility physio, Neurology which brought good news that I do not have an Arnold Chiari Malformation and I have had MRI of my spine. Maybe time to rest for a couple weeks.