Category: Ehlers Danlos Syndrome
Can creativity be a realistic distraction in the face of chronic illness? “The Agony & The Ecstasy”
I have another link for you this week which examines how distraction, particularly through the arts, can help to manage symptoms of chronic illness. This could of course be construed as a sweeping statement and I am certainly not saying that every chronic illness can be tamed by use of artistic means. I am certain that those of us with chronic illnesses will readily say that our own conditions vary from day to day, some from hour to hour, and that relief and the methods to get that relief are variable. In other words, conditions are individual and we certainly are.
I have written about British actress Cherylee Houston before. She is in a long running British soap opera, is a chronic pain sufferer, wheelchair user and is the ambassador for Ehlers Danlos Support UK. In this BBC Radio 4 programme she sets out to meet other chronic pain sufferers and to learn how the condition impacts upon their lives, their work and how they use creativity to help themselves. Is pain always a negative experience or can it actually enhance creativity?
Many of us bloggers use writing as a creative way in which to help our own situation – this may be through connecting with others, supporting others in similar situations and reaching out for support ourselves – but more often than not actually writing about our experiences and feelings is a cathartic experience in itself.
Writer Jack Thorne
Performance artist Martin O’Brien
Nearly everyone will be able to identify with some part of this programme and I hope that you find it inspiring. Enjoy!
Further reading : The Pain and Performance Artist Martin O’Brien – an essay
Photos from Google Image search
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Rheumatology, Cardiology, Falling Down and Midodrine
Finding the time and energy to write has been a challenge recently. I’m not sure if you would describe my worsening ailments as a flare, but my poor, body has been struggling to hold things together.
Last week I saw my GP and my cardiologist and managed to get two new referrals in the process. The first to a new rheumatologist, recommended by the London hospital who diagnosed me, and the second to an endocrinologist to check if the cardiologist is missing anything. Don’t you just love these multisystem chronic illnesses?!
For the rheumy we have a family outing on the cards, as the A level student and lovely girl have also been referred. The bookings department called last Friday and asked if we would like consecutive appointments – I bet the consultant will love it when she sees the same surname appearing three times in one morning. “What another genetic problem?!” I have put off having the kids diagnosed with hEDS even though I can see elements in all three of them, but it has only been recently that I learnt from the lovely online support that they might be eligible for extra help in exams. This is down to the pain and difficulty with writing that we with bendy fingers and dodgy collagen experience. My daughter has never been able to hold a pen properly and they both struggle to be able write as fast as their peers – their brother, the uni student, was exactly the same at school. In fact his fingers are so flexible that you might think they were missing their bones altogether.
The schools have responded really well and thanks to some fantastic blog posts that I was able to direct them towards, have now heard of Ehlers Danlos Syndromes. We missed the deadline with the exams boards for the A level student to receive extra time (he needs a formal consultant recommendation) but he is allowed to be in a smaller room and to have rest breaks. Had his typing been quicker, he could have opted to use a laptop. My daughter’s school have been fantastic! They are keen to learn – obviously they have seen me deteriorate after repeated surgeries and progress into a wheelchair – and many teachers have been upset to learn that she has not spoken up about pain, dislocations and difficulties in games classes. Of course she is worried that a fuss shouldn’t be made as there are other people more in need! But in terms of her year 10 exams after Easter, she will use a laptop and take rest breaks. When I was at school I had no idea that the pain I always had and my difficulty getting through written work was actually down to a genuine problem – in fact at the beginning of this academic year none of us dreamt that our pain would actually be considered a reason for the kids to need extra help! Of course the new guidelines came out last week for diagnosis criteria, so I’m not sure what they might be deemed as – well I could say a few choice words that have nothing to do with EDS!
More to come about the criteria and of course how we all get on.
The EhlersDanlos Syndromes International Classification
I have been on the waiting list for a follow up cardiology appointment since the end of last year. Immediately after my tilt table test, I started the synthetic steroid fludrocortisone to increase my circulating fluid and raise my blood pressure…if anything it made me worse as the faints, falls and injuries have come thick and fast. My GP tried to have an appointment fast tracked, but when this couldn’t be arranged the cardiology department told me to double the fludro dose and continue with compression tights, fluids, salt. I have felt so unwell and so tired! Last week the consultant started me on midodrine, which in the UK can only be prescribed by a cardiologist for extreme cases of low BP that haven’t responded to conventional treatment. It is early days and I am only on a low dose three times a day – but I cautiously think there is a small improvement. The last dose of the day mustn’t be too close to lying down in bed as there is a risk of increased blood pressure when flat and strokes. One side effect I do have is a strange creeping, tingling sensation of the skin particularly my scalp – about an hour after I take it when it reaches highest blood concentration level. So if you see me out and I’m itchy, I really don’t have nits!!
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Saturday Submissions: “Dysautonomia for Dummies”- With Evie from The Zebra Mom
Dysautonomia for Dummies from the fantastic Zebra Mom
I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.
I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…
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Pain Relief Cushions – my review of a natural product to aid in pain relief
Disclosure: “I have been given a “Cosy Cushion” Pain Relief Cushion as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”
When we have pain the natural thing to do is reach for something to give us some comfort and hopefully in the process reduce the pain….or get rid of it! This goes for a toddler falling and bumping a knee, to a broken bone, to labour and childbirth, to post operative pain. Fortunately these pains are usually short lived (yes, I know that some labours go on for days, ladies) and will become a memory. Not so chronic pain, which by definition is pain that has been regular and ongoing for over 6 months.
For most of us living with chronic pain, we have had to find our own methods to help to ease the symptoms in conjunction with drugs and medical intervention. My back and leg pain is caused by nerve root damage, and I have always found heat to be one of the few things to offer me any relief. So I was really pleased when Pain Relief Cushions gave me the opportunity to trial and review one of their wheat and lavender cushions.
Pain Relief Cushions state that their mission is to “provide freshly filled cushions at point of order” and that “the same cushion can be used hot or cold”. The cushions can be heated in the microwave or will take heat from a radiator in order to “give a gentle, penetrating heat which goes deep into the muscles, eases and relieves pain”. They can also be kept in the fridge and used for cold applications such as swellings and sprains. The company is approved as a member of The Guild of Master Craftsmen.
I requested a long cushion to use across my lower back and down the length of my leg, but the cushions come in several different shapes and sizes to suit differing needs. It arrived well packaged with a covering letter, a flier describing the product range and care instructions, and a separate insert with care instructions for the heating and freezing of the pillow. The pillow is completely natural – the cover is luxurious cotton velvet, available in a selection of colours, and the filling is wheat and optional lavender.
I did opt for lavender and this was the first thing that I noticed on removing it from the packaging – a very pleasant change from some of the less sweet smelling similar products I have used before. However, the teens in the house did not like the lavender smell, which initially becomes stronger upon heating – personal preference, I guess, as my husband and I both liked it. The bag is well labelled with clear heating instructions and power settings for your microwave – an average time being 2 minutes. The care instructions are easy to follow explaining the importance of bunching up the bag, that the microwave plate must be freely spinning and that a new bag might feel “damp” the first couple of times that it is heated. Likewise the instructions for cooling/freezing are clear.
I have been using the Pain Relief Cushion daily for approx a month now and have been very happy. When sitting I regularly use an electric heat pad but as this is plugged into the mains, it is not always convenient to use. This is when a microwave heat bag really comes into its own, and whilst I have used similar products in the past I found this wheat bag to be superior in quality. Before I have found that wheat bags have not stayed warm for as long as my trusty cherry stone heat bags, but the Pain Relief Cushion does stay warm for a similar time span and is well made. Remember I use it daily and heat it several times a day, so it is very well used. 
I cannot claim that it gets rid of my nerve pain, but it certainly helps to ease it. It has also been very helpful for the Ehlers Danlos join/soft tissue pain that I have all over my body – it was particularly good for my neck and regularly dislocating shoulders! The pictures were taken on a “popped” hip joint day. For those of us with monthly cramps, it is a great safe alternative to a hot water bottle! I personally haven’t used the cushion as a cold compress.
The only piece of negative feedback came from my daughter with regards to the packaging. She commented that in her opinion the flier would attract younger people to the product with a more contemporary, clean look – she is naturally artistic with an eye for graphic design.
From the time that I have used my Pain Relief Cushion, I would definitely recommend it as an aid to pain relief and will continue to use mine.
The products retail in the UK at www.painreliefcushions.co.uk and in the US at www.ease-pain.com
The company can also be found on social media : Twitter, Facebook and Pinterest
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Migraine, Anxiety, Ehlers Danlos and Guilt
Our household has been plagued by migraine this week. Whilst the actual physical condition only affected one member of the family, the anxiety it caused affected us all. The A level student is all but an adult, a tall, lanky young man not so different from every other adolescent on the edge of adulthood. But he is afflicted with migraine headaches and anxiety which are becoming more and more regular.
I was much the same as a teen, but I think that mine reached a peak at about the age of 20, when I found myself referred to both a neurologist and gynaecologist. Of course something that I now know that my mum didn’t, is that migraine is particularly prevalent in the Ehlers Danlos community – actually we had never even heard of EDS. But mum has always experienced migraines, and we all have painful necks and what mum has often described as a lollypop head. You know, when your head is too heavy for your neck. I have memories going back to childhood of needing to roll my head and crack my neck, starting when sitting on a schoolroom floor looking up at the blackboard – yes, I am that old!
But now the anxiety comes from concern for the next generation in our household. We are constantly being told that the mental health of our youngsters is on the decline, and the school have told us that there is enough work to keep the counsellor in full time employment for the sixth form alone. I suppose we could say that whilst my three have not been formerly diagnosed, I can recognise enough EDS traits in them and they all share high anxiety levels. This, coupled with migraine and the stresses of coursework and public examinations for the second, have pushed me to become that mother who seems to be constantly emailing the head of year at school. I have gone from merely attending parents’ evenings to contacting the school on a weekly basis and I even sent in an information sheet about EDS.
Being aware that your children, no matter how old they are, have inherited certain traits from you and believing that your own health issues have impacted upon them, is very different when actually seen written down in black and white! An assessment that we received this week, in an attempt to help gain some control for my son over the migraines ahead of his exams, listed out issues for all of us. In fact the only one not covered is the dog and he probably is the most stressed of the lot!! He was a rescue who was diagnosed as special needs and autistic when we took him to training…..now aged 14, he is pretty happy so long as he is at home with no other dogs in sight.
Whilst the rational part of me knows that I shouldn’t blame myself, the irrational psyche is guilt ridden. I know that many other chronic illness bloggers have written how nothing can adequately describe the guilt that we can feel about the impact that our health has upon our loved ones. For me it has weighed more heavily than ever this week as I read that assessment – maybe it is self indulgent to feel that I shoulder the blame for my husband’s stress related health problems, the university student’s peaks and troughs of angst with the world, the migraines of the A level student and the the now increasing subluxations of the lovely girl. The kids all have pain in their hands and wrists upon writing, and my daughter has never been able to hold a pen “normally” to write.
It was only when I recently purchased finger splints that I realised that I too have always felt pain in my hand, struggled with pressure in my fingers and found myself much slower at writing than my contemporaries. For all of us aches and pains are just normal everyday.
Although we currently await an appointment for the younger two to be seen at University College Hospital, London where I was diagnosed, and the right medication needs to be found to stabilise the migraines, at least I have learnt enough to find the A level student qualifies for rest breaks during his exams – politics, history and English literature. All essays…all heavy on bendy fingers, thumbs and wrists. Thanks to all those who have offered support and advice when I have asked for help this week – you know who you are!
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A Chronic Comparison?
I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.
Last week I took part in an on line research forum into chronic lower back pain. Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions. We were also encouraged to comment on each other’s posts and interact as on any forum. The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness. The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.
So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing! It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it. Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way. 
I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain. Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.
The support group was a night out for us the previous week, and we even managed a meal before. It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety and EDS. I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you. When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.
I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure? Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do! But of course I don’t…..
When these comparisons happen, be it ourselves or others making them, I wonder if there can be a thin line between support and competition. I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms. But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless. I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”. I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.
Just because a certain operation helped me doesn’t mean that it will help you; just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!). My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer. The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups. Yet whilst some people who have fantastic success with the stimulators have had a new lease of life, I have actually deteriorated physically despite the stimulator being a success.
My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain. Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other! Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose. But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.
I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about. This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 
The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time. Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”. Out of the mouths of babes….
So what am I trying to say? We are all individuals. We will all experience a common cold differently (think man flu!!). So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another. I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.
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What does Ehlers Danlos Syndrome look like?
Please just take a moment out of your day to view these remarkable photos that the Ehlers Danlos facebook community have shared with The Mighty in response to the question
What does Ehlers Danlos Syndrome “look like”?
A couple of my own to add to the mix……
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Honey Colony Superior Cannabinoid Rich Hemp formula reviews on website; the grey areas of the law and usage of CBD in USA & UK
I am very pleased to have a mention on the honey colony website as a reviewer of their Superior Cannabinoid Rich Hemp Formula. The other reviewers are Kristin of A Life Well Read, Heather of The MS Life and Kristin of Mini 2Z – all fellow members of Chronic Illness Bloggers network. 
My original review can be found here Review : Honey Colony Superior Cannabinoid Rich Hemp Formula for pain relief 
The Drug Enforcement Administration in the USA announced earlier this month that all extracts of marijuana, including CBD, are illegal under federal law (Rolling Stone article Inside DEA Ban on Marijuana Extracts). I understand that this has triggered great debate in many communities and that there are legal challenges being made to determine whether the DEA has authority to exceed the Controlled Substance Act. Many suppliers of CBD & hemp products are reporting that sales will cease by 14th January 2017.
I wonder where this leaves the situation in the UK, particularly as the reviewed honey colony product is produced and shipped from the USA. Having read various pieces, the law in the UK seems to me to at best be grey! This article published on politics.co.uk by journalist Deej Sullivan sets out to examine Uk laws, the introduction of the Psychoactive Substances Act, the Misuse of Drugs Act and the role of government & the Home Office with respect to enforcing said Acts. I admit that I am not a great deal clearer!
I continue to use my product (it may not be quite clear on the website that I no longer take Oxycontin – last New Year I down to approx 80mg daily – and that the spinal cord stimulator delivers an electric current to the nervous system not drugs Spinal cord Stimulation) – and still find that it helps with muscle and joint pain resulting from my EDS.
Claire x
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A Chronic Christmas – inconvenient illness for the holidays
Pain pals,
I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so. Blog posts, social media & all things requiring thought or energy have been low down the list of to dos. Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help. Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!
Wouldn’t it be great if chronic illness gave us a break over the holidays? When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks. I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life. POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.
Uncle Dunc doing his bit!
The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute. My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert! I have cancelled coffee & lunch, rearranged and then the same again. We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.
But there have been memorable moments. I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants. Fantastic! One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway. Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs. We were both exhausted and if ever there has been a time to feel light headed this was it. Then I remembered why I had put them on. I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!! 
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it. About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….
The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks. I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it. I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket. I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital. The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment. I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door. I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!! He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.
The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company. The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it
all happened rather quickly and reality was I wouldn’t be well enough. So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine. This left me alone with the teens and I did enjoy the couple of days I had to myself. I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful! We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl. She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).
So it really has not been all bad. I have missed writing and the support of my social media chronic pals, but I know that you all “get it”. Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).
But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!
I hope that you have had a peaceful Christmas holiday, Claire x
PainPalsBlog 