Just wanted to re publish this great post describing EDS – some of you who know me might recognise the descriptions!
Busy week last week for all sorts of reasons. Trips to London, organising and attending a careers night, cinema, theatre, school meetings, catching up with old friends and a charity race night. The Careers in Engineering was a great success – I did admit to not being an engineer, but to having some pretty good engineering inside of me! Oh yes, and taking 3 generations of my engineering family with me – I managed to be the most embarrassing mum of all time for our student. Dad came as a roving host and there was never a glass of red far from his side. Dad, Duncan, Matthew and Daniel – couldn’t have done it without you. Check out our pics: Engineering photos kgs friends engineering.
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.
The race night was a charity event in aid of research for Prada Willi syndrome Prada Willi syndrome. It was organised by friends whose third baby was born with this metabolic condition for which there is no cure. The hall was full and our local shops had been very supportive with donations of prizes and sponsoring horses – the support of so many friends and family was quite wonderful. This little known condition and the research & support given by the charity definitely desrve a shout out.
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!
I equally know that other people can’t get their heads around the fact that I need so much help now – after all I don’t look sick, until I can’t stand up, have no balance and my shoulder dislocates.
Yesterday my week finished or rather was finished off by a dog walk in the cold. I know, I know – I shouldn’t have gone, but it was a beautiful day and I really wanted to get out. Big mistake. The cold permeated every part of me from my joints to my back to my foot. How is it possible for internal titanium to feel cold? I made it home just, then proceeded to 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!!
When I started this blog I wasn’t sure where it would take me – a good way to update friends and family after surgery; maybe to be able to offer a glimmer of help to others undergoing scs or experiencing chronic pain; what I hadn’t anticipated was how much I would enjoy writing again, how much I would enjoy & learn from other blogs and that I can vent my frustrations without being lynched by 3 teenagers!!! Thanks if you are still with me.
Not quite gone! But I think I should be off opiates soon. When I attended the pain course last May I was taking 60mg oxycontin twice a day – that is the equivalent of quarter of a gram of morphine a day. Believe me when I say that is a pretty hefty dose and combined with lyrica, some days I should not have been upright. St Thomas’ were very definite that I had to start reducing it with a view to coming off it entirely and I have always been quite happy to do so. My GP has been very supportive and allowed me to set my own rate, and whilst reducing from the high doses at 10mg per month it was fine.
As any practitioner worth their salt will know, this is because high doses of oxy can actually worsen symptoms of pain rather than reduce them. A vicious cycle begins as the pain increases, so the oxy dose is increased, the pain may settle for a short time before it increases again, the oxy dose increases and aggravates the pain, and so the cycle continues. In some cases, for instance a colleague’s teenage son with prostatitis (acute inflammation of the prostate gland), the pain symptoms far outlasted the actual infection – the poor guy had excruciating pain for months longer than he should have, missed his start at uni and all as a consequence of the side effects of the opiates. This means that just as I had felt very little benefit as the oxycontin had gradually crept up beyond a certain point, I equally felt little difference as I gradually reduced it. That is until the last couple of weeks, when I have hit a therapeutic dose!
An upside is that my memory is better than it has been in a long time, although the family might not agree. But a negative is that not only has the pain felt worse, but my sleep has deteriorated again as my new pain relief – the stim – cannot be on at night. I haven’t even started to think about reducing the dreaded Lyrica(pregabalin) yet, and I’m on the full wack of 600mg per day! This is one to write about another day……
We discovered the Carers’ group outing to the Odeon cinema today – Dads’ Army was the film to entertain us. It brought back lots of childhood memories having grown up watching the original tv series, and had a fantastic cast including some great female characters. 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??
I really don’t know where January went. Between parents’ evenings, option evenings, governor duties and arranging a careers evening, the different schools have taken over my waking hours. The careers evening is an engineering event for 16 – 18 year olds, arranged with the alumni committee from my old school. I’ve exploited all the contacts I could, including the livery company in the City of London for whom our engineering student is an apprentice – we are hosting it in their amazing venue at London Bridge. Thank you WC of Scientific Instrument Makers.
The family have all been roped in – father, brother, husband and son – whether they want to or not!! But the biggest joke is that so many people assume that I am an engineer……….I just have to say that no, I’m not, but I do have my very own amazing bit of engineering going on in my spine…..titanium, screws, electrodes, battery!
Thanks to the people who have been in touch checking where I’ve been. I’m ok – not great – but ok. I had a check up at St T’s and the nurse was happy enough with me. She was pleased with my usage and time switched off; apparently I increase usage over the weekend and then to hit a peak on a Monday….funny that, what with a house full of teenagers, washing, cooking, dog, MESS!! I actually needed to change the batteries in the controller last week – for anyone with a new stim, the batteries lasted me about 3 months and these can be run to empty. Not to be confused with my implant which must 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.
Those of you with a tingly scs will know that this increases the parasthesia enormously as the spinal cord lies on top of the electrodes
– those of you who don’t, try to imagine sticking your fingers in a socket and the resulting hairstyle!!
This recent bout of cold weather isn’t great for those of us with chronic pain. One friend said he has actually been really grateful for global warming keeping this winter so mild! Imagine that feeling when ice cream hurts your teeth……then put it into your back, down a limb and out of a hand/foot multiplied by 100 and you will start to get the picture. Duncan and I went for a walk yesterday afternoon, having been told by middle child that it was quite mild outside. I don’t know what he was talking about, because it was freezing and there was an almighty battle going on down my leg between the wind, the pain and the stimulation. With chronic pain, it is as if your body’s wiring has malfunctioned and parts start misfiring and become hypersensitive – for me it includes my gut. My biology drummed the word peristalsis into us at school, and on Sunday in the park all I could think of was Mr Parfit’s peristalsis as I heaved all the way home!!
There is something new that I managed to do with my stim helping since my last post……..attend a Burn’s night celebration at our daughter’s school. We were given the tickets at short notice by a friend and had no idea what to expect. Duncan chickened out and turned down the offer of a kilt, instead opting for a tartan dicky bow……..was he worried about getting the knees out, or what a man really hides under his kilt????
The haggis was great, as was the piper and the Scottish DT teacher, resplendent in full kilt, who spoke Robbie Burn’s infamous words as he broke the haggis open. 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……..