Your Comments

If you would like to leave a comment about this blog, ask a question, or just say hello, please do so here. I’d particularly like to hear from anyone with a cure for Ehlers Danlos Syndrome and a time machine. – Thank you.

 

  1. Hi Ceri
    Just come across your interesting article, I’m sorry to read you cannot enjoy your food the conventional way and are now wheelchair bound, my mild symptoms seem insignificant in comparison.
    I haven’t been diagnosed as having EDS but family history indicates there’s a lot of weird stuff going on. Paternal side hypermobility, fatigue, dislocations, fragile skin, mitral valve complications. I was recommended by a friend who suffers with fibromyalgia to see a local nutrional therapist who used the kinesiology method for vitamin, mineral and food intolerances/allergies/deficiencies.
    On the advice I started supplementing with magnesium, Vit b, c, d, e, folic acid, q10, iron, boosting my Vit k through food and eliminating the nightshade food group and yeast, no vino! Much less painful joints, fatigue and muscle tightness this has enabled me to up my fitness on some days to a reasonable level.
    I still have off days but supplementing has definitely had a positive effect. 😀
    Keep up the good work, I really enjoyed reading your blog!

    • Hi Karen,
      Thanks for your comment. It’s great to hear you’ve found a nutritional supplement approach that’s helping you. There have been some very interesting articles written in recent years on how nutrition effects EDS. You might find some articles / videos by Dr Heidi Collins helpful.

      A lot more research needs to be done. But I’m hopeful in the coming years improved understanding of how nutrition effects connective tissue will lead to evidence based dietary advice that could benefit all of us on the connective tissue disorder spectrum.

      I’ll be posting more EDS / nutrition info in the coming months, so keep following!
      Best wishes, Ceri.

  2. Just opened my Fragile links magazine and read your article….. Thank you for highlighting the issues of PEG tube feeding..I see we share the same group of consultants!. I have EDS 3, POTS, Mast cell disorder and AMS…. I am relative newbie using my JPEG for the past 7months, but have been suffering for decades and after many bouts of malnutrition I was finally fitted…. Being attached to a machine all day feels like I’m on a leash…. Managed to hold down a job in investment banking for almost 15yrs but simply couldn’t take the pain anymore and was so tired of watching people eat all day on the trading floors… Torture…. Now at home but require constant help from my wonderful family to get by….My mother is a chef, my sister is a baker so I have to remove myself from so many family occasions and it feels like I’m rejecting them or choosing to be a recluse but it’s a daily struggle…..

    Thanks for sharing your story with a great sense of humour….where would we be without it! Hope you continue to improve and get stronger….
    Can I ask do you take any supplements? Have you read dr Heidi Collins research on EDS and magnesium? It’s helped my joint issues but early days…just thought it was worth sharing…..

    • Hi Sabrina,
      I was sorry to read you needed to have a jpeg. They’re not a fun addition to anyone’s life! 7 months isn’t long though. I’ve found living without food has got easier over time. I hope you do too.
      And you’re under Profs Mathias, Grahame and Aziz? They’re great doctors and very nice people too. Unfortunately Prof Mathias retired earlier this year which is a great shame (but well deserved).

      Since starting this blog I’ve become very interested in how better nutrition might help people with EDS. We seem to be decades away from a treatment for EDS, so optimising our nutrition intake may be a way of minimising symptoms for now. There’s been surprisingly little research on nutrition specific to EDS though. I have read Dr Heidi Collins EDS – magnesium articles, very interesting. I’d like to try it, but unfortunately I can’t take tablets anymore so supplements are difficult for me. Currently I only take vitamin D in a spray form, but I get very good and personalised nutrition through TPN.
      Thanks for your comment, Ceri.

      • Great to hear from you Ceri, I have troubles with supplements too but I found a magnesium body oil spray that works really well called Better You, delivers 43% RDA in 10 sprays! Can I ask what Vit d spray you use? I’m struggling to tolerate my oral tabs.

        Agree there is a lacking of good information on diet and EDS but so glad the EDS Uk org are addressing that in their fragile links magazine…

        The Drs are great and I realise the limitations of handling such a rare combination. Can I ask the Drs have mentioned possible addition of tpn as I am struggling to get more than 700kcals a day….. I’ve been resistant for so long but do you think it really helped you? Realise how limiting it is in terms of leaving the house, or getting out of bed for that matter!

        • TPN works well for me and probably saved my life 😀. The drawbacks are obvious: you need a Hickman line which has to be looked after carefully, plus TPN needs to be set up meticulously and each time you do it you risk getting a blood infection. You also need a pharmaceutical fridge in your home to store the TPN bags in. But for me it provides excellent nutrition and doesn’t give me any symptoms at all. It runs through in 12 hours and you can sleep while it’s on. I find it less restricting on my mobility than peg feeding. I often pack TPN in a rucksack and go out with it. I can’t do that while peg feeding as I get tachycardia if I move around.
          So it noticeably improved my lifestyle. Whether you want to take the infection risk to get better nutrition is up to you (and your doctor and dietitian of course). If you’re struggling to get enough calories eventually it might become the obvious choice. Good luck if you go ahead with it.
          The vitamin D supplement spray I use is called ‘BetterYou DLUX’. I’ll have a look at the magnesium spray sometime, thanks for the tip.
          If you want to carry on this discussion without sharing every detail of your diet with the world, feel free to email me: { removed due to junk emails } – Thanks, Ceri.

  3. I think this is a fantastic blog. Brilliantly informative and perfectly pitched.

    By the way, my brother in law has EDS. He is also called Ceri. But he is not like you. He is an idiot.

    Lots of love from your brother in law… d’oh!

    • Thank you very much for the complimentary part of your message.

      You then imply that my blog creates a better impression of me than the reality. I see that as another compliment to my blog, so thank you. – It’s a trick I learnt from this short, scruffy, useless guy I know who has managed to get over 16,000 Twitter followers.

      Love and kisses from your idiot bro in law x

  4. Thanks for the blog, it’s very interesting & well-written. I’m trying to get an EDS diagnosis at the moment (that sounds weird but it’d be better to have confirmation & not just think I’m making up the joint pains, ‘wobbliness’ and constant soft tissue injuries!). Despite spending my childhood showing off by making my body into a wheel with my feet reaching round over my head to my mouth I’m only just realising that my hypermobility is not ‘normal’ – I’m now constantly asking people if they can do x, y & z too or if it’s just me. Lots to get my head around…

    • Hi Rachel,
      Thanks for your message. As I’m sure you’ve read being hypermobile is quite common, particularly in children. But how it affects people can vary vastly.

      For musicians and some athletes it can be quite useful, or just cause mild joint problems in others. But for a minority it can cause lifelong pain and be accompanied with complex systemic problems of the bowel, lungs, heart and blood vessels. I’m far from an expert though. There’s an excellent article explaining all the issues involved by Dr Alan Hakim (click here).

      Have you been seen by a rheumatologist yet? It would really help to get a diagnosis so you can get appropriate treatment. Dr Alan Hakim and Professor Rodney Grahame have both been of great help to me. They work in London however which might not be accessible for you.

      Good luck seeking a diagnosis and with managing your hypermobility. Feel free to get in touch anytime, I’m really not an expert though!
      Best wishes, Ceri.

  5. Cez

    Really enjoyed reading your blog….your gallery pictures reminded me of something from C4’s Embarrassing Bodies but luckily you left your clothes on!

    I echo Hedley’s comment’s but I’m only down the road in Epsom so I have no excuses for not catching up….

    Keep up the blog, I’ll sign up for updates.

    Cheers

    • Hi Huw,

      I’ve never seen Embarrassing Bodies, but a few people have told me I could be featured. I probably also qualify for The Undateables, Benefit Street and Gogglebox, but you won’t be seeing me on any of them. – Well maybe Gogglebox! 🙂

      Things are easier for me now than over the last few years. So I’m trying to keep in touch and meet up with old friends more often. – I was sent some great photos from another old buddy of ours today. I’ll mail you a few soon.

      Thanks for following. Cheers, Ceri.

  6. I see these comments about time machines, and simply by looking at the names of those who have all commented, I feel like I have gone back in time. Ceri, its been so very very long since we spoke or touched base. In fact my life away from the UK allows for an unacceptable lack of contact with dear friends from an important part of my life. Claire made me aware of this blog just today and I felt compelled to read. I won’t ask how you are or how life is, your struggles are clear to read, I am only sorry not to have made contact earlier. David, nice to see you haven’t lost that ‘wild wit’…I fail to see however, how taking a ‘pop’ at my beloved Spurs provides any really meaningful content to a great blog. Leave the Spurs alone please! I will continue to read with interest your blog Ceri, it has really touched a nerve and my thoughts are with you and I hope that you will indeed find that time machine…if you do find it however, please can you ‘nip’ back to our Oxshott FC days and give us all a damn good talking to about our hair, tight shorts and general ‘campness’! Personally I blame the parents! I will continue to drop into the blog and look forward to reading more. As a footnote, Ceri, your attitude is an inspiration. I admire how you have kept your wits, charm and positivity. I am sure there are many strangers who will read your blog with interest and gain valuable knowledge. Love and light to you all.

    • Hello Hedley!
      Great to hear from you old buddy, been too long as you say. Thanks for reading my blog. I wish I had more positive news to share about my life. But it’s good my friends know how I am these days and why I haven’t been down The Leg much in the last 20 years!

      No one has contacted me about a time machine yet, but things have been a lot easier over the last couple of years thankfully. I’ve slowly been getting stronger and managing to have a bit more fun too. I see my Dad often which is obviously a strain. I have to put up with a lot of Arsenal related boringness. It’s his birthday today, so I should be nicer about him than usual. He’s 86 now, but to his credit he doesn’t look much over 85.

      Due to your interest in historically bad hair and general campness I’ve added a new photo to the Gallery page. It’s as camp as I ever got. Twenty years on I’m just grateful I still have hair, I’m not that bothered what it looks like.

      I hope you’re well, happy, and life in Dubai is still great. Keep following the blog. They’ll be regular paternal insults for you to enjoy, and please feel free to add a few of your own…

      Big hugs for all your family, Ceri.

      • LOL!!! That’s a great picture…I believe that was my 18th birthday!! There’s a time machine right there!! Happy belated to Mr Teasdale. Looking fab for 86 Dave! Life in Dubai is going well, it’s been almost 16 years now! Where does the time go…

        It’s big year for the family Grist…we have a family get together in France in August, then Claire’s 40th closely followed by Tom’s 40th…then in November, Hazel (my far better half) celebrates her 50th….

        So I will be back and forth this year, and we really must try to catch up if we can make the diaries work. I will keep you closely posted. Perhaps with enough notice you could drum up some that ‘home brew’..

        Take care and we’ll stay in touch!

        • Your little brother and sister are going to be 40?! I think that confirms we’re getting old… Really good luck with the celebrations, a fun year ahead for you all!

          Let me know when you’re somewhere near your old stomping ground, hopefully we’ll be able to get together. It would be great to see you and catch up properly. I haven’t been in home brew form for a while, but it might be fun to try. 🙂

          Thanks for getting in touch. I’ll try to dig out some more daft hair photos for you sometime. I’ve probably got a whole blogs worth!

          Cheers, Ceri.

  7. Hi Ceri

    This is very informative and very well written describing your journey so far. I think blogs like this will go along way to raise the profile of EDS and help those seeking to understand their condition. I for one will be following your posts. I enjoyed looking at the photos in the gallery section as it reminded me of my time playing for Oxshott and living in the area. Please pass on my thoughts to your parents.

    An old friend

    Mark

    • Hello old friend!

      Thanks for your comment, really good to hear from you. I’m enjoying writing this blog and so far it’s been a good way of family and friends keeping up to date with my progress (…or lack of!) I’m really hoping it will help some people with EDS too, but at the moment few people know about it and it’s on page 11 of a Google search. That should improve over time.

      I don’t see you on Facebook much, but when your posts pop up they’re always very interesting. Congratulations on climbing Kilimanjaro, it’s a great achievement and must have been extraordinary. Also really good luck reaching Mount Everest base camp, another brave challenge. Don’t forget to take a scarf!

      Best wishes, and say hello to your family please.

      Ceri.

  8. Hi Ceri,
    Long time no see ( probably not since you scared me witless with your door closing spider!!) I have really enjoyed reading your blog, and learnt a lot so thank you. I will continue to follow. x

    • Hi Sophie,
      Nice to hear from you. Sadly the spider is out of action at the moment. Not everyone warms to him like you did, so I actually suspect sabotage. – Thanks for reading my blog. Come again soon for updates on me, and as you’re no doubt concerned, also the spider. Ceri x

  9. Hello Ceri,
    This is certainly an impressive site and we’re very glad that we have read it and now know a little about EDS and its challenges.
    I know that it’s taken you some time to put together, but we hope that doing this has provided you with an outlet and perhaps some support from others who may be familiar with the issues involved.
    We’ll dip into the site from time to time to see how it evolves. Please use it to keep us updated.
    Best wishes from Helga & Phil (old university friends of your dad’s)

    • Hello Helga and Phil,
      Thanks for your message. It did take a while to build but it’s great people are reading and enjoying my blog. I’ve learnt a lot about EDS myself from making the site and I’m enjoying finally doing something to help the cause. Come back again soon, there’ll be regular updates.
      Regards, Ceri.

  10. Just been sent here by your old (odd) man. Arsenal! When will Wenger learn that you have to play quite a lot of the 90 minutes without the ball and thus need defenders?
    Great site – well done. I’ve had a read, I knew absolutely nothing about it, but now know a bit more. Keep up the good work, especially trying to convince your father thatv being a Gooner is a curse!
    Stewart

    • Hi Stewart,
      Whenever I see my Dad I get an emotional monologue about the woes of Arsenal. I just nod a bit and try to distract him. He’s sadly hooked on supporting them and a loyal disciple of ‘Darth Wenger’. As a Spurs fan their troubles hardly upset me, plus we have plenty of our own. Derby day might give us a chance to chuckle at their expense. Thanks for reading my blog. Good luck with your next book. Ceri.

  11. Thank you Ceri for sharing your blog. I am a friend of your Dad through sport, mine being scubadiving ! I found your blog really interesting and you write so eloquently.
    My dad is a physiotherapist and so too was my mother . Dad is still practicing at the age of 82 and he is aware of EDS. He will share the blog and feels that it will be a really useful tool as he has said there does not seem to be much information available so this will become highly successful I am very sure . My niece is a newly qualified physio and I have just shared with her as well and said spread the word.
    Look forward to the next blog

    With best wishes.

    • Hi Mary,
      Thanks for your comment. I’ve had a huge amount of help from physiotherapists down the years. For EDS they can often give more help than doctors. They’re also best placed to spot the problem of hypermobility. So it’s ideal to spread the word in that field, thank you very much.
      I have a couple of friends who scuba dive, I’ll mention the BSAC when I next see them.
      Regards, Ceri.

  12. There are notable gaps here, like your obsessions with Spurs FC and certain old movies and with Harrison Ford as your real Dad.
    BUT – there is a real lack of insight, expertise and information into and about both EDS and POTS – and it’s high time a blog like this filled the gap.
    So, it’s important we all spread the word and hopefully get as many as possible reading and using this. You’ve done a really good job here……..

    David

    • Thank you David. There are notable gaps in your comment. Like sorry for supporting Arsenal, and for raising me as an England fan who lose more often than Spurs. But thank you for your nice words and especially for your endless tireless support over the last 20 years (and the 22 before that when I was much less trouble!).

  13. Hello! I have the time machine… the secret is to have children and then you age super fast, speeding through time as if in a tardis. Sadly only forwards. I look as old as Peter Capaldi now.
    xxx

    • Collagen injections perhaps?! – Oddly the singular benefit of EDS is due to hyper-elastic skin we wrinkle less than you healthy type people. I’m often told I look much younger than my 36 years x

      • I think you’re confusing that with “much stupider” or references to your mental age, Lego boy!
        I suspect this is not the place for familial abuse, do you have a separate page for that? Dad will need a terabyte or two.

        Congratulations on the launch of your blog, I’m sure it will be life changing for some people and may mean that they don’t have to endure some of the set backs you’ve had. Hopefully the comments page will soon be populated by them. Also I hope you don’t get loads of rude spammers with eye raising enquiries about bendy bits!
        Love you lots xxxx

        • Thank you big sister. But I’d like to point out my use of Lego is medicinal, it strengthens the hypermobile joints in my hands. Coincidentally it just happens to be cool and fun. Famous AFOLs (adult fans of Lego) include David Beckham, Brad Pitt and Will i am. – I think that’s my first piece of actual advice for people with EDS on this site ‘play with Lego’! xxx

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