Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group. I went with mixed feelings. Eagerness to see friends who understand me and trepidation for who the scs had been successful for. Last May the eleven of us had such high hopes, desperate hopes. But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us. I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.
As it happens I needn’t have worried. I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose. Any suggestions out there for coming down from this final 12 hourly 5mg gratefully received! My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet. But I did get a retune!! 
On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse. Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same. It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting. Win, win. Back to the INPUT session ….
Only 3 of us turned up. 
Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury. It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on. We did meet some of the participants in week 3 of a 4 week course which was interesting. A couple of them had already had stimulators which had failed – one lady had received 2, both failed. Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully! Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square. I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means ALL NIGHT. I’m so jealous!!
We both have similar stories, similar failed surgery and pain in the same areas. The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things! Who do you believe? I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future. Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!
I have been determined to live life as before and I so desperately want to be able to go out every day as when I was working, socialise, do what other people do. But this week it felt like my wretched body let me down physically and mentally – Ehlers Danlos and chronic pain let me down. I feel so frustrated: that I can’t have arrange a full week; that I felt panicked at the thought of a trip to the London theatre; that in the theatre I had to ask to swap seats as the draught from a fire exit door caused excruciating pain; that as the week progressed the exhaustion became more and more extreme; that by Thursday morning my physio was sticking needles into a shoulder muscle so tight from recurrent dislocations and stress; and that I constantly apologised and the tears flowed nightly.
I hate to move the spotlight back to me, but couldn’t help to notice again at said race night, how people don’t know how to react to the chronically ill. (No, I’m afraid that is not me – I don’t look that good at any time!) I don’t usually describe myself as “ill”…….I don’t think of myself as “ill”, and I am acutely aware that “friends” don’t know how to react to my disability now. We know that others socialise without us now, and who can blame them? When a 46 year old woman has to have her mum help her in the
loo – although they were primary school toilets and very close to the ground – no wonder I needed help to sit down and then get up off the blinking thing again!
scare hubbie and daughter by passing out and then stopping breathing – although as middle son would now point out in his very loud, deep voice I had to go and start again. Charming!!
The plot was as daft as ever, the men as dippy as the women were sensible, and the Home Guard, with just a little help from their strong ladies, saved the day against “MR HITLER”. We were some of the youngest in the cinema, and even in a carers and cared for group were the last to make it out. Duncan very nearly tumbled down the stairs with me today as my leg/foot were numb and my balance indicated that I’d been on the booze when I stood at the end!! Very good first impression I created. I’ve said it before but the stim doesn’t stop my leg going dead…..does anyone out there have any helpful tips??
ust NOT be run flat…..unless I fancy a quick date with my friendly Guys’ anaesthetist! The thing I found tricky was quantifying exactly how much the stim has reduced the pain as it varies so much. I know what I should be saying and what the hospital want me to say, and I can say that I definitely have some control back…….even if that is by lying flat on the ground.
Something I hadn’t mentioned to Duncan was the Scottish dancing after the meal – his worst nightmare. Funnily enough the stim really doesn’t give super country dancing powers – and Duncan said that for once he was delighted I have a bad back! He only narrowly escaped being pulled up to join a reel……..
So nice to see them actually getting on. In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress. We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo. It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike. That was one very long trek and never has Waterloo bridge felt so endless – it took 45 minutes to get me across the bridge alone! A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.
them! This is the only year when all 3 will be teenagers……….more later but enjoy these silly pics for now!
Panic started to kick in at the end of last week when the cupboards were bare and the fridge was empty, so we hauled ourselves coughing and wheezing to the supermarket. As friends commented that they were busy getting everything done for Christmas, I was thinking that I hadn’t even thought about it let alone started! Going from post operative recovery straight into flu/cough for nearly 3 weeks has not been a great seasonal prep time.
I can see my friends’ lives moving on, careers unfurling, travels taking them far and wide, and I do feel that mine has come to a stand still. Self pity? I hope not. More being realistic and understanding my limitations. Note to self – New Year, new pain relief with the scs, new stage in my life!
PainPalsBlog 
