I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course. We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away. Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial. It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.
This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey! Car journeys are not easy for me, like I imagine for many with pain & disability. The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion. My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself. Not forgetting the EDS. The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe! With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.
Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl. One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations. I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun! She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself. Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me. So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!
She was probably right – I doubt that she would have been able to get me up again.
Exeter is very hilly. Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled? In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city. The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting. Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.
I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing. In short, I might be able to enjoy a day out and actually have some more freedom.
There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month. Any suggestions gratefully received!