December 2011 – Scared – Carol’s Birthday & Still Sorting Stuff Out!

This month has had challenges on a couple of fronts for Carol - we’ve been dealing with:

1)      The laptop is currently gathering dust as Carol can no longer use the headswitch comfortably, so she hasn’t been keeping in touch with everybody. We’ve been looking at options with Carrie from the Speech Therapy team and she arranged for Carol to have an assessment for the Tobii PCEye – that’s the device I’ve previously mentioned that costs a fortune! The assessment was a real success, and it’s a very impressive piece of kit which would suit Carol’s needs perfectly – we’ve just got to hope that funding can be sourced from somewhere – Carrie’s on the case and fingers are crossed. 

2)      Carol’s sleeping has actually got worse this month – something I didn’t think was possible! This arose from the heart palpitations problem and the introduction of the new medication to stop them happening. Although we got the palpitations pretty much under control the side effects from the meds caused other things to happen. Carol experienced problems with a dry mouth (typical after all the trials of 2009/10!) and this was keeping her awake so I had to use the artificial saliva spray to counter this. Despite the sedative properties of both of the new meds Carol continued to baffle medical science by lying awake most of the night! The recent challenges of trying to get Carol comfortable in bed have also impacted on sleep and we’ve now resorted to a V-shaped pillow to try and give Carol the required neck / head support. I do need to thank Amy and Dr Anderson for all their help this month – we’ve had a number of conversations trying to find solutions and we’re now on the 4^th different permutation of meds / doses. Too early to say if we’ve cracked it yet but Carol is now on a stronger sedative at night to help her sleep – I’ll keep you posted.

My parents have come down to stay with us for 3 weeks – it’s always good to see them and even more so at this time of year. There’s the good feeling in the house that they always bring and Carol has more company – so she’s not just stuck with me!! These visits also give Mum and Dad the chance to catch up with the kids, and now of course their Great Granddaughter – they’ve not been down since August and baby has changed a lot since then. They’ll be here right through New Year so it’ll be nice to spend time with them – especially as I’m off work myself for the Xmas break.              

18^th December - Carol told me she was scared today – scared of how her body feels inside and of the things that are happening to her every day. What’s the correct response to that when I’m terrified myself? We no longer have many answers and “it’s going to be ok” doesn’t work anymore. Being the organiser I’ve been able to get things done for Carol and keep everything under control so far, but as we reach this stage of progression our ability to keep ahead and find solutions is diminishing.

23^rd December –Carol’s birthday - I‘m wishing my beautiful lady a very happy 47^th birthday today – and judging by the numbers of cards, presents and flowers so are plenty of others! Despite all that’s going on there are still things that need to be celebrated and today is most definitely one of those. Great to have some of the family around and there are also lots of messages on Carol’s Facebook page – my lady is loved by many people and that’s something to cherish.

So Xmas is upon us again – not a time to dwell on the negatives, we’ve got through another year and for me that’s a real bonus. This has always been Carol’s favourite time of year so let’s all enjoy ourselves and be thankful for what we have. There won’t be any New Year’s resolutions – let’s just keep going and see where life takes us from here.