OK not quite a film star! I might have mislead you slightly in the title, but I hope it got your attention. Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”! I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!
We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.
Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features. If you watch closely you might find yours truly in the mix!
Please take a look – bookmark for later – share with friends and family. Just getting the name out there raises awareness for us! Details of fellow zebras can be found on Jenni’s channel.
Another week, another Monday – so that means one thing here at PainPals! Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!
There have been two major events in our house over the last week. The first was a long awaited appointment with a geneticist for the beautiful girl(BG). I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation. Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis. My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18. So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18! Then the children’s department decided that they really weren’t the right people to see the BG. Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.
Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating. Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history. The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself. No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems. Ringing bells in my ears!!! More of this in another post…..
The second major event was our old dog Sam having a massive haircut with our fantastic groomer. Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back, hips and rear legs. He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy! He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.
Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before. Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health! Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great! If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.
Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends! The first post is a shout out award for all us spoonie bloggers!
I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays. So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale. Please send me all your top tips and I will put a post together – funny tips too please!
Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house. We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack. Think I would be correct in saying mainly make up and bling…..she won’t be offended! We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day. The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes! The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous. I think maybe the head should have adjusted her speech….shortened it!!
Anyway, despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo. But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car. I came round on the gravel carpark floor surrounded by faces….not just those of my family! There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!! The school nurse was quite excited, having come to these events for years and having nothing to do. As a fellow nurse I loved this
Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS. So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you. The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant. This post is about living with a chronic illness as a teen.
Time for your cuppa and relaxation time with some inspiring posts! Enjoy!
We are all here in the UK, after a very difficult week, enjoying another bank holiday Monday. I don’t want to write anything other than our thoughts and love are with everyone in Manchester.
This week the youngest household zebra has been away on a German exchange trip and has had the most fantastic time. I must give so much credit and thanks to the staff and her host families – particularly for quietly acknowledging that her joint and pain problems might impact upon some of the visits. I think that the visit to caves involved a serious number of steps!! She has returned on a high, despite having her bag & mobile phone stolen, and the whole group of English and German teens are still chatting constantly on a group chat (you can imagine – “how quickly can I get a new sim card, dad??”)…..watch out for the return visits in October.
Today also marks the last Monday in May and so the last in Ehlers Danlos Awareness month. I am shamelessly going to share posts and sites that are all from people affected in some way by EDS – from Vlogs on Youtube, to an author to beauty blogs.
For a little Monday Magic, make a cuppa, sit back and enjoy! Please remember to like, share and comment to make someone’s day!
I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month. Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!
“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican