I heard Desert Island Discs this morning. Kirsty Young was doing her usual thing. Love it. She was interviewing Keith Richards from the Rolling Stones. She asked about his hands, and I was curious enough to google a picture of them. He said they never hurt and he had no pain with them; he just had to play the guitar differently sometimes to compensate. I was rather shocked. They look extremely painful. On the other hand (!) mine look perfectly normal, yet they hurt almost all the time and dislocate frequently. It’s strange having an invisible illness.
Fantastic discovery. I am officially excited about a gadget! Thank you to my family who came back from the Bath and West Show with presents for me……..
Chef’n have products designed to use fingers – no need for thumbs. I have the palm peeler and it means I don’t have to squeeze my thumb, which these days hurts too much. Quite brilliant.
I also have the citrus grater. From the picture it’s supposed to be used for citrus fruit, but I use it for grating cheese, and it works marvellously. It saves having to grab the big grater – painless!
In the same range they have potato brushes
and a zester.
I noticed they are on offer in Lakeland at the moment, and John Lewis also stock them. Otherwise available online.
Two days ago I went to have blood taken. The nurse commented that it was an unusual set of tests: Vitamins D, B12, C, magnesium, potassium, iron and folic acid amongst others. She was fishing in the nicest and jolliest way, so I said I had Ehlers-Danlos. Had she heard of it? No, she hadn’t.
Nothing new there then. We come to expect it.
In the Co-op just now there were serendipitous bags of parsnips at 29p. Fabulous. Parsnip soup will soon be on the boil. In my vegetable reverie I couldn’t help overhearing a young man stacking the shelves and talking to his friend. Now it’s generally rude to eavesdrop on private conversations, but this one was about his shoulder ‘popping out’ last night. He had to put it back in again. My interest was aroused. Should I say anything? What would he think of a stranger starting a conversation about his shoulder? Ah well…..so I plunged in: I couldn’t help overhearing, and does your shoulder often pop out? Yes, it did, and yes, he could do 7 out of the 9 tests on the Beighton scale – which he’d never heard of – and showed me some of his ‘double-jointed’ party tricks. He’d never heard of EDS or even hypermobility.
I’m going back to take him details of my blog. I didn’t want to scare him (don’t know if I succeeded in that!) by asking if he had flat feet and if he could do certain contortions…..but he did and he could. No, the doctor hadn’t told him of any underlying condition. I tried to reassure – after all, he may well be hypermobile and asymptomatic. In which case it’s all hunky dory and merely a flexible friendship. Then again, it may be EDS.
Why do the medical profession rarely know anything about this, especially when it is so very easy to detect? I shouldn’t have to tell someone this way. But it sadly didn’t surprise me that his doctor knew nothing about it………
Good old Waitrose. I love their free tea and coffee. At the weekend I was sitting in their café, enjoying the quiet and writing a few thoughts which had popped into my head. After a couple of lines I had to stop. My hand was hurting too much and it was difficult to carry on. It’s easier on the ipad. It feels like bad arthritis, but there is no inflammation of the joints, just the pain.
My daughters and I have all had problems with our hands. The girls found it excruciating to write for long times, and it affected their exams at school. Fortunately they had great support and were able to have extra time for rest during exams, or were permitted to use computers. At uni they had disability status and were given options of tables and chairs which were at proper heights and enabled them to sit in the most comfortable positions. They were also given a portable recorder. Taking notes in lectures was difficult, so they were able to copy up the notes afterwards. One was also given help towards photocopying since carrying heavy books from the library was hard. She also had a small allowance for taxis to help when she was too exhausted to walk home after lectures or couldn’t ride a bike that day. We were impressed at the level of understanding and help through the university disability support, and very grateful.
The hands were a problem and I was able to find a hand specialist who saw us all. We had wondered about finger splints. The Silver Splint Company had some lovely ones and we investigated those. They were very helpful, but in the end, with their advice, we decided not to go for them. Finger splints are excellent if the joints are dislocating or subluxing regularly, but our joints were just painful at that time, so the advice was to avoid splints and concentrate on finger exercises. We do have some wrist splint supports for when things get very painful, though again, reliance on them can weaken the core strength of the hand, so we try not to use them all the time.
The specialist we saw did make a personal pen holder for one of my daughters, to help her to write more comfortably, and we have putty and little stress balls to enable exercises. Playing the piano is good too. A little trick my Pilates teacher told me is to shake my hands when they are particularly painful. It helps greatly.
We have learned coping mechanisms. I cannot hold a full kettle with one hand. So I’ve learned to use two. We bought aids for turning taps and opening jars. There are plenty available online. I found that the tannin in the numerous cups of tea I drank daily was exacerbating the symptoms, and now I have peppermint tea in the mornings and very weak tea for the rest of the day. The aching has reduced dramatically, though never goes away. I bought a lightweight hairdryer. I still have to put it down after a couple of minutes of use, but it is better than the old one. I can’t hold the landline phone for long and have to change hands every couple of minutes – thank goodness for texts and emails.
I was in hospital last week for an x-ray on my shoulder. This is the latest investigation after two years of searing pain in this shoulder (which I have always been able to sublux at will). It was found that I’d grown a spur of bone (common in the elderly I’m told!) which has been digging in – not the dozens of things they tried first before actually x-raying it.
While I was waiting, a young girl was playing in the corridor. I noticed her joints were bending interestingly, and when she did the splits I started a conversation with her mother and asked if she could do the typical Beighton tests. Of course she thoroughly enjoyed showing me her bendy thumbs, fingers and knees. Yes, she could sit in the ‘W’ position and yes, she had flat feet, etc. She didn’t look symptomatic (but we all know that experience!), and may well not be. Her mother looked surprised at my own finger movements. “I’ve never seen anyone else’s fingers bend like that! I thought my children were the only ones who could do that.” As we continued chatting it emerged that her adult son had all sorts of symptoms consistent with EDS. He had severe health issues, especially with his feet. His ankles were causing him so much pain that he had had one amputation and was going to have a second foot amputation in a week’s time.
I was rather shocked, to put it mildly. She had never heard of EDS or hypermobility and her son had never had a proper diagnosis for his foot pain. I was left feeling perplexed that even doctors are still so ignorant of EDS, and told her to start googling! A chance encounter……but then we didn’t know what was wrong with us until a chance encounter with a physiotherapist who we were visiting for something else.
I started to become curious about my strange body after a trauma at work in 1999. Won’t go into it here….it’s all in the section My Story. But after five years of sleeping the greatest part of each day and not being able to concentrate to read even a page of a book, and a further five years of continuing not to work (sixteen years later I still cannot work full-time and probably never will be able to), I knew something was dreadfully wrong. Kind and well-meaning people gave the normal advice: all in the mind, in some way or other. I had a pretty shrewd idea it was all in the body, triggered by trauma. In January 2013 my daughters and I were diagnosed with Ehlers-Danlos III, Hypermobility Type. Diagnosis means freedom in the sense that at last I knew that the invisible aches, pains, subluxations, dislocations, chronic fatigue, depression and inability to function had a real physical cause.
There is no cure. Yet.
Daily I am trying my hardest to make sense of this newly-discovered condition, unknown to most people, and which has little research or media coverage (no doubt until someone famous starts to tell the world about it).
Welcome if you too have Ehlers-Danlos, or if you’re supporting and loving someone else who has, and want to understand more. I wrestle with a feeling that it is indulgent omphaloscopy to write a blog. Who wants to listen to everyone else’s aches and pains when they have enough of their own! But I’ve found it surprisingly helpful to join forums and read about the journeys of others with EDS, and my aim is to make this something of a diary as well as a repository of helpful articles, links and progress in EDS research. If it helps others too, then I couldn’t be happier. Please contribute. Your ideas and thoughts matter to me. Thank you for your love and support.