The trip back to hospital is never that easy as the journey, whilst not far in distance, can be a nightmare in minutes. Of course it is easy by rail to Waterloo, if you are able to jump on and off a platform, negotiate stairs & crowds and walk for miles to use disabled access or lifts. I can no longer do the above with any degree of ease and climbing aboard a train is akin to mountaineering for me. If you have never used the rail or tube network with a disabled person, you will not have noticed that in order to use the lifts or disabled access, you invariably have to travel 3 times the distance either via tunnels or platforms to reach the same destination. Hard at the best of times, now just a no go, so the car it is!
Fortunately it was Friday yesterday so the traffic was lighter and we were entertained by Mr Chris Evans talking his Radio 2 guests – Tom Jones, Brian Adams, Steve Coogan and Stellan Skarsgard – into being his guests for the Christmas edition of TGI Friday. The appointment with Steph, the CNS, was to ensure that I have a good understanding of recharging my battery – that has so many double entendres doesn’t it! So when Steph asked me to talk her through the equipment and show her how to use it, I was confident having recharged the previous night. Those of you who know my other half will know that he is a gadget man and more than that, he is OCD when it comes to said gadgets. When he was working, our kids used to joke that on arriving home from work, before he even made contact with us, he would check his hifi/TV equipment in the lounge and then check his coffee machine in the kitchen. Our 16 year old now tells people that his dad spends his days polishing his coffee machine and screens of all shapes and sizes!! So there was a meeting of kindred spirits when I took the equipment out, and Steph exclaimed in excitement that it had been beautifully placed in the protective covers and the attachments secured correctly. A conversation then followed about the relative merits of leaving film screen protectors in place on screens – they took their phones and cases out – or regularly cleaning them. Gadget geeks unite!!
I have had a couple of concerns that I put to the nurses: I have required a higher voltage setting on the implanted stimulator to gain the same level of coverage and parasthesia as with the trial one; the parasthesia is very positional and I experience a huge range of feeling and coverage as I move my spine; I can’t help worrying that if I have to turn the voltage up to mobilise, when it is cold etc, that eventually the stimulator will not mask the pain. Steph assured me that everything is within normal parameters – if I was jumping from 2 to 8 volts, then she would be concerned, but the amount that I am using is not a problem. Phew!
To say I was exhausted on our return home is an understatement. I couldn’t keep my eyes open, but then had a really unsettled evening when my pain left me feeling so agitated that I had to turn the stimulation off. This did cause a slight panic, but then I remembered what I have read on various forums from othe scs users and not everyone has good days everyday. Similarly after a trip to the local shops this morning, I had to remind myself that it wasn’t that long ago that I had 2 surgeries in quick succession and they take their toll.
I did try to wear some different trousers out this morning and failed miserably as the low slung waistband caught the implant. OMG, in kid speak, did that hurt!! It is still throbbing now – remember it is only 1cm beneath the skin and is easily felt. (Ben, I get it now!!) So I will have to continue in trackies for the forseeable future as healing occurs – and then I can start on the huge amount of weight I have gained, aghhhhh.