Just wanted to re publish this great post describing EDS – some of you who know me might recognise the descriptions!
Source: Ehlers Danlos Syndrome for Dummies (and orthopaedic/rheumatology consultants)
Category: Ehlers Danlos Syndrome
Reflections and resolutions
The end of the year always feels like a time for reflection, doesn’t it? Or is it just a time for looking ahead and making those dreaded New Year resolutions, only to broken by Jan 5th!? I really, really want to be looking forward for my own sanity and for those around me – but not before I reflect on this year. Please indulge me……
It has been a tricky year in our house for a variety of health issues and the related monetary concerns that being unable to work brings. It is almost exactly a year since Duncan was given the correct meds for his depression and was able to start on the long road to recovery. At first, when he was so ill and unable to think straight, he was adamant he wouldn’t take drugs. During my time nursing I cared for many patients and relatives who resisted antidepressants and we had the “if you had a headache you’d take a paracetamol; you have a chemical imbalance that just needs a little extra help to be put back to normal” chat. At least when it was my own husband, not only had I this medical experience, but I had also been there myself just 2 years ago. As a society we still prefer not to discuss issues of the psyche, whether our own or others – there remains a stigma around mental health problems. Maybe this is part of the reason that so many of us feel an overwhelming need to refuse medication – feelings of shame, embarrassment, failure, fear, addiction concern, to name a few. I remember feeling like a huge failure when I joined club Prozac and illogically ashamed. It took several months before Duncan was convinced of the need for chemical help and then the first drug only went and made his symptoms worse. But with great support from our GP and the correct drug, he has made progress. We would probably both say, about each other, that seeing your partner in the grips of something that you have no control over is the hardest thing to witness.
Then one of our sons was also ill and this really did knock us for six, as we had never seen him like this before. It emerged that he had recognised certain symptoms when reading articles with titles such as “Existential depression in the gifted and talented adolescent” – I was lost by the end of the first paragraph! Happily with the right support all round, we all have a better understanding and things are back on an even keel. But our youngsters today never switch off. They are constantly over stimulated as they rely on social media to communicate, and have a powerful hand held computer in the shape of a mobile phone on tap 24/7. Overthinking has always been an issue in the very bright, but I wonder if we will see it increasingly becoming the norm?
My appointment with the specialist pain team at St Thomas’s came just in the midst of these crises. I warned the psychologist that she had caught me at the end of a particularly stressful and emotional week, but she told me to describe everything from the start of my back problems. “But that began in 1991 – should I really go back that far?” “Yes, please” “How long do you have?” Poor woman didn’t quite know what had hit her!! This in turn led to my 2 week inpatient programme and subsequently the implant. It all sounds terribly easy like this……
I have had some highs and lows over the last fortnight. One real success was a trip to London to visit the student with the other teenagers. We decided to brave the train rather than London Xmas roads, and I even had a member of BR help me to get into the carriage which made me feel about 90! We had a lovely meal on the South bank and then enjoyed following our three offspring around the Xmas market. 
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.
But I have also learnt that the stim can only deal with so much! As the weather has become colder over the last few days and the nights have been so windy, so my barometer body has played up accordingly. My EDS has left me with extremely painful shoulders which dislocate regularly – Duncan monitors me when asleep to ensure that I haven’t lifted an arm above my head…and the weight then pulls itself out of socket!! The back pain at night has been reaching a peak and I actually fell asleep with the stim turned on, and a trip to our local shops became extreme as both the weather changed and my leg pain rocketed. Even the stimulation couldn’t do battle with the nerve pain exacerbated by cold wind and rain – we couldn’t even stand upright – and the then familiar nausea and vomiting that follows when my body experiences large changes in temperature. In this case it was stepping into our warm home!
For someone living with a chronic condition, looking forward to a new year can become something to dread rather than to celebrate. At times the thought of living through another year in pain has been too much to contemplate even with the love and support of family and friends. So this New Year, as others resolve to try that new diet, join the gym, do “dry January” etc., etc., I will continue to take each day as it comes. As a family we will move forward together, continue to battle the intricacies of the benefits system, look toward Dunc returning to employment (albeit on a different level), the kids being teenagers(!) and for me to cautiously look to a year with some control over my body, that has been stolen by chronic pain, being restored to me with my stim. I hope that we can remember that there is always someone worse off ……
Finally, after a very long post which I started on NYE, as you recover from festivities – I wish all my Painpals a peaceful and healthy 2016! 
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Blue badge
Yesterday I received an email reminding me that my blue badge is due to expire next month and I need to apply for renewal. The process was fairly straightforward online, but having gone through so many strands of the benefits system since being “medically pensioned”, is it only me who finds the lack of liaison between departments so frustrating? The number of times that I have given identical information to slightly different departments, and the amount of time and money that could be saved if there were joined up thinking and communication between them. I had to upload another photo, which then had to be processed – yet there is already one on file that is on my current blue badge. I really haven’t changed that much! I automatically qualified due to my disability, oops no, my personal independence status, but I am pleased to see that the application process is tighter now than it was 3 years ago and that I was asked to send documentation regarding my mobility to the council. When I applied last time I was surprised that I didn’t have to provide any form of proof, and have been frustrated at a lack of consistency across areas. Not to mention the rise in thefts of blue badges from vehicles and subsequent black market (http://www.disabledmotoring.org/news-and-features/news/post/127-blue-badge-theft-increases). I had better stop there!
This has got me thinking about how much chronic pain robs us of our independence and sense of self. I still remember so clearly the first time that I put that badge in the car windscreen when mum and I went food shopping 3 years ago. The last thing that I wanted was a bl..y blue badge for so many reasons, but on that day I felt an overwhelming sense of both shame and sham – I felt guilty that I was using a disabled spot when there were others so much worse off than me, but it was also like admitting defeat. A loss of independence and actually facing up to needing help. My dad and godfather always used to joke that they planned to retire to a chateau in France and “what was the point in having a nurse in the family if not to look after us?”. A nurse with a dodgy back is probably worse than no nurse at all!
My blue badge has become a life saver in so many ways though, as my mobility has deteriorated over the last few years. 
The second fusion – the revision and extension – has actually made things harder physically and at times I feel like I’m going to snap in two at my waist. I wrote on one of my pages about the Ehlers Danlos consultant’s comments regarding fusions, and I really understand where she is coming from now as the strain at the joint above the screws feels under more and more duress. the stimulator can’t help with this pain. So to be able to park the car in the centre of town and avoid a long, slow, painful walk back is priceless. I walk with a stick or a crutch these days – too many falls leaving me too unstable without – but only 2 out of 11 of us used an aid from our pain group. One of the men, in his 50s, said that he found it infuriating (using rather more colourful language!) that when he parked in a disabled spot he would regularly get disapproving looks, despite his blue badge. In fact he has been on higher rate Disability Living allowance for several years, but he doesn’t look disabled – you can’t see his pain.
As a hospice nurse, I did become skilled in recognising the tell tale signs of an individual’s pain and our nearest and dearest will learn to recognise those signs in us; but Joe public is easily fooled by a cheery greeting, that very upright posture (from screws and rods, or indeed from the need to stand up to feel the scs!) or a slash of lipstick and blusher. Sometimes we need to be fooled too.
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