Hello PainPals! I did start an Inspiring Blogs for you last week, but life seemed to get in the way. This leaves a couple of weeks in the PainPals house to catch up on, yet the brain fog is leaving me struggling to remember what happened yesterday let alone last week – but I will try.
When chronic illness (CI) slowly creeps up on you, often the “patient” and the “nearest and dearest” don’t notice how life has changed because we are all too busy living it. A couple of weeks back I was very proud that I managed to successfully make a 50th birthday cake for a friend’s Silver and Gold party. The cake took all week as I painstakingly cut out icing stars, painted them, baked the cake, iced the cake – taught hubby how to ice the cake! – and decorated it. I am so slow now as my hand frequently spasms (when painting on hundreds of gold “stars”) and the dislocated right arm is not conducive to handling a heavy icing rolling pin! But I did it.
The next challenge was to get to the actual party. Before CI, dressing up in silver and gold sparkles and spending my night on the dance floor being the dancing queen would have been a great night out. With CI it can be a struggle to actually get out in the evening before fatigue sets in, but an extra strength is needed to overcome not just the physical limitations but the psychological ones too. Before I could get through the door of the party venue in my electric wheelchair, I had to break through the barriers that my own brain was throwing up as I came to terms with no longer being an able bodied dancing queen. The words drowning queen often spring to mind as the body won’t behave in the way that the head wants it to. I still struggle, yet live this daily – and it soon became clear that it wasn’t just me having to come to terms with these changes.
Several different friends asked if I had seen another lady – a mum from the primary school, where we all used to meet at the school gates when our now young adults were little. The interest here was that she was walking with a stick and “something” had happened to her – they wondered if I knew what? I didn’t know, but immediately recognised that there would be people looking at me in the same light “last time we saw Claire she was up and mobile – for some it would have even been pre walking stick – what has happened that she is in now in a wheelchair?” But for anyone who hasn’t witnessed that event or that general decline, so often they feel they can’t ask.
When this other lovely mum and I “bumped” into each other at the edge of the dance floor, I think that we immediately recognised kindred spirits and were also not afraid to ask “what happened?”. She told me that she had suffered a stroke in her forties, I told her about my back surgeries and downward spiral with Ehlers Danlos Syndrome and chronic pain. We discussed wheelchairs! When I later said to my friends that others (who hadn’t been with me over the last 10 years) would be wondering about me in the same way that my pals had mentioned the other lovely mum, at first they were taken aback and then realised this was true. People who were not in the know were not “gossiping” about us, but rather were surprised to see such a huge change and I think this makes us think of our own frailties and indeed mortality. But I can assure you – a good time was had by all!
Sparkles at the ready!
There has been a momentous event in the household – the young engineer has moved out! Hang out the bunting, change the locks……no, only kidding but I have to say that the household has used far less pasta and tuna in the weeks that he has been gone. He has moved with a couple of friends into a swanky pad alongside the Queen Elizabeth park – home of the 2012 Olympics – in east London. I did remind him that the new bedding would not only have to be put on the bed but also taken off the bed and put in the washing machine…..that gizmo sitting in the corner of the bright white new kitchen. I wonder how long it will stay looking that way?! This place is so smart that there is even a posh onsite gym for residents! I am happy to report that he has not returned to the wrong address – at least not to this one, his better half may beg to differ! Hubby and I have been sure to book our Christmas dinner at his place (we might be treated to tuna pasta).
The weather in the UK has been truly wet over the last fast weeks and with the changing of the clocks winter is arriving. I have been reading some great wintery posts over the last few weeks so thought that I would share some before we enter December. So sit back with a cup/glass of something delicious and enjoy!
Regular readers will have realised that Monday isn’t working out too well for the regular blog share post. Maybe yours truly isn’t organised enough (yes, Mum, I know!), maybe I prioritise my admin role for scheduling within a Facebook group (Chronic Illness Bloggers, I love you all), maybe the day to day fluctuations of my own chronic illness just take over.
One of the most frustrating aspects of chronic illness – chronic pain, Ehlers Danlos Syndrome, POTS etc etc – for me is being robbed of the ability to make plans. Don’t get me wrong, I do still make plans but I hate having to cancel and at times it does feel easier just not to make those plans in the first case. It would be so easy to slide into an oblivion of constant sofa days without ever having to worry about keeping an appointment. But this is too often the reality for the chronically ill with regular flare days and once very active people find themselves unable to keep up with life – certainly true for me. So I must still try to make arrangements and to get out and about when I can. I won’t be running any marathons soon, but this week I have managed a couple of trips to the park (between rain days) and a cinema visit to watch a recording of Matthew Bourne’s ballet Romeo and Juliet from Sadlers Wells. Different, controversial, inspiring, beautiful, dark, amazing…..just some of the words to describe it.
The beginning of half term was dominated by A level English Literature course work, as the lovely girl battled to complete her comparison of two self chosen novels. With hindsight – that wonderful thing! – I think that maybe she bit off rather too much in choosing A Little Life (Hanya Yanagihara) and The Goldfinch (Donna Tartt), both weighty tomes. The first deadline came and went, as did the second. Meanwhile a Whatsapp group gaggle was regularly checking in as they all struggled to complete their pieces on their respective books. By the following morning the lovely girl’s piece was complete but needed to be cut by 1500 words!!! Hubby and I were called in to help with proof reading/editing, which was hard enough for me as I have only read one of the books, but hubby has read neither! We were both sent packing pdq, but we do feel that we know the books inside out now (I have read A Little Life and thoroughly recommend it – warning not a happy read!!). Finally, 24 hours after the original school deadline, her piece was submitted…..now it is on to the Extended Project and the art coursework. I may not be physically doing the work, but I feel like I am (ha, ha, ha).
I think that I have found some great new blogs for you this week and hopefully will brighten your day as we step well and truly into Autumn – the rain in my part of the UK has been horrendous. Grab yourself a cuppa, sit back and enjoy!
It feels like forever since I last posted Monday Magic…..in fact writing still remains a bit of a challenge with the dislocations and whatnot getting the better of me.
I did learn a valuable lesson last week. Hubby was out coaching year 6 football (10-11 year olds!) so I was home alone with our 17 year old dog. Before the front door slams I always hear the same phrase leave hubby’s lips “Don’t do anything stupid!” – I mean as if!!! I had helped the dog up – he can no longer stand unaided which prove problematic for yours truly – and then headed for his pottery water bowl. “That looks a bit manky, Sam, I’ll get you some fresh water” :just as I was crossing the kitchen, heavy bowl in hand and stretching the ligaments to the limit – one hip decided to go disco dancing all by itself. Pop! Out of socket it leapt and left its owner leaping across the floor, skidding in the dog’s manky water and the owner nose diving toward the hard tiles of the kitchen floor.
You know that feeling when something happens in slow motion, yet there is nothing you can do to prevent the outcome? After face planting the ground I slowly attempted to move, gently checking for injuries. Who am I kidding, everything hurt like crazy, most joints had popped out by this point and I couldn’t have told you if anything had broken or not. Could I stand up? um…..Could I sit up?…..maybe, if I could manoeuvre myself without using arms or legs. No that really wasn’t going to work, particularly as there was water all around me. After heaving myself up the kitchen cupboards into a quasi seated position, I managed to use my mobile phone which happened to be tucked in my pocket and ring my parents, who live up the road. Hurray – they were home and came straight down, but I was still soaked through to my underwear by the time they arrived and of course Dad laughed. I can see the funny side – the dog had scarpered and was waiting in the hall for them, whilst I was spread eagled across the kitchen floor surrounded by water and smashed crockery. What a sight to see!
Anyway my lesson was that when the family “fuss” and tell this old know-it-all that I must behave and always carry a phone when home alone……they are right. In fact I think a key box may be a good idea – not for when the lovely girl or the young engineer forget their keys – but in the event that I have to “phone a friend” for help in the future.
The bruises have been monumental down my legs, side and arms – the whole Ehlers Danlos easy bruising skin has been in full view, but they are now fading. Our dog is the proud owner of a brand new PLASTIC blue water bowl. Hubby has managed to get me to the theatre and on a university art school open day with the lovely girl – with lots of velcro fastenings and tapes to keep everything in place. But as you can imagine the call before the front door slams has now become “I mean it this time, Claire – don’t do anything stupid!!”
I have read numerous blog posts over the last few weeks whilst nursing my sore body and have picked a few favourites that I think are inspiring. So sit back with a cuppa and enjoy!
It has been a momentous week for several reasons. Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again. I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery. Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed. There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.
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Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans. So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again. Wednesday arrived and we decided to give it a go. The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away. It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!
I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre. My driving skills are improving! With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!
This week the lovely girl started work experience with big brother, the young engineer. How I wish I could have been a fly on the wall!! He wants her to help with design elements of…….um, I wish I knew or understood!
It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit! The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat. The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.
So back to business and sharing some great blog posts with you. I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals. So sit back with a cuppa and enjoy!
Why is it that chronic illness can leave you feeling like a hypochondriac? When one thing leads to another and then another and then yet another? A flare of days turns to weeks turns to months……
When I wrote my last blog post I had no idea and certainly no intention that it would take me so long before I would be back again. So often we speak of pacing and the need to prioritise for our own self preservation, but even this can become physically and mentally exhausting.
Chronic pain combined with brain fog, combined with the disability of the dislocated right shoulder (yes of course I am right handed), multiplied by the hot weather doubling the effects of POTS and the number of faints, equals in some strange algebraic type equation a hell of a couple of months!!
I am lucky to be an admin for a great group called the Chronic Illness Bloggers and I always prioritise the scheduling of their posts to Facebook as number one each week. This means reading each blogger’s post to check that it adheres to the group rules ahead of scheduling and this is a past time that I look forward to – my guilty pleasure, for sure. There are some seriously good writers out there and each week I come away having learnt something new, hungry to try another different recipe and generally inspired by our community. Brain fog and painful hand spasms have led to writer’s block on several different levels for my own writing……and on reading some of these wonderfully written and thought provoking blog posts, I have actually questioned my ability to write and felt a little intimidated.
The longer my flare and writing drought have endured the harder it has been to find my way back. The inevitable thoughts of losing readers and poor stats start to creep in as the ever popular “how to write a successful blog” type posts crop up daily on my social media feeds. Social media – aghhh! Has anyone else found themselves drowning in the inability to keep up with all the different platforms, when a head that has been stuffed with a mixture of cotton wool and candy floss will not allow you to remember how to even eat breakfast? Scrolling down the ipad on Instagram is enough to set off hand pains, and keeping up with world politics on Twitter is enough to trigger a migraine!
Two days later and I am back to try to finish this post. The last couple of days have been filled with fainting, trip to the doctor, more fainting, CIB scheduling, even more fainting and….oh no, the increase in symptoms caused by monthly hormonal fluctuations!! Great. But….I have read and scheduled more blog posts – found great tips on managing pain, journaling, the importance of a great support network to name but a few – and I thought about why I started blogging in the first place. I knew nothing about stats and social media platforms – I wasn’t on Facebook or Twitter, and Instagram was just a word that the kids threw about. Not once did I think about the numbers who might read my ramblings about chronic illness and family life. I wanted to share my experience of living with chronic pain and chronic illness – at the time having a spinal cord stimulator implanted to help with nerve pain – and maybe give something in the same way that I had received support and hope from other blogs. Writing can be therapy, a distraction, an outlet, a hobby and a sanctuary.
So here sits this zebra attempting to write…hopeful and thankful and wanting to re-engage with this wonderful blog family.
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PS: I am also the owner of some fab mauve fingerless compression gloves that help keep the spasms at bay when I type – hurray!
Another week and here we are in May – so it seems perfect to have a little May Magic as Monday came and went this week! It has been a perfect day in south London – sunny, bright and mild – what better way to start the month.
Hubby is away this week with the year 5 classes for an “outward bound” style activity holiday – or to put in in layman’s terms…..archery, hiking, zipwires, pylon climbing and more with 60 nine and ten year olds. Of course hubby has the boys’ dorms under his care after the activities finish for the day, and his comment to me on their first night was “I knew it was going to be challenging when we started our first task of bed making and one of them actually said ‘what’s a duvet?”!!”. They usually arrive home with damp kit, a bit smelly and absolutely shattered…..and that is just the adults. This year they have a bank holiday weekend to recover and I know that the adults will appreciate the extra day for R&R.
This leaves me at home with my offspring. The eldest has just returned from a surprise birthday weekend away in Dublin – lovely treat from his better half – and is now looking forward to the first package in his gift from us…..a subscription to Pong Cheese Club. Watch this space for taste testings! My main carer for the week – the politics student – is nearly as much help as a chocolate teapot as he has succumbed to Ehlers Danlos Syndrome and dislocated his knee during a footie kick around. He managed to relocate everything to the correct position – you get used to doing this with EDS – but now cannot walk, despite my best efforts with tubigrip, a brace, crutches and painkillers. We must have made a strange looking team as we put the rubbish out today…..him on crutches, me in a collar and sling – there is definitely a joke in there somewhere about the number of dislocations in a household of zebras!!! (Why the zebra?)
I started saying what a beautiful day it has been and this led me to a big achievement, namely my first solo trip out in my electric wheelchair. It has been a while coming, but today I was due to visit my friend for a haircut and whilst mum waled there with me, I came home alone. I know that it sounds crazy for a woman of a certain age to be excited to get home under her own steam, but having that little bit of independence back after so long was both exciting and terrifying in equal measures. Fingers crossed that over the next few months my joystick control and pavement driving improves – it is very hilly here, but I have good brakes!!
There is a great selection of spring blog posts here and one in particular is close to my heart, as I was a specially trained head and neck cancer nurse in a previous life. The final listing is from Angela, and I think will strike a chord with all bloggers as she explains to her nearest and dearest that it is ok either way if they read her writing or not. So sit back with your favourite tipple and enjoy!
For some time now I have been looking for a garment that would give my ever dislocating shoulders some support and yet that I would also be able to actually put on without dislocating said shoulders! More of this below. The Active Posture products were recommended to me and the company gave me a posture vest to trial in exchange for a fair and honest review.
Posture clothing: all you need to know
It can be difficult to keep an upright posture throughout the day, which is where posture clothing from ActivePosture® can help. Posture clothing activates muscle memory to help you achieve an improved, upright posture.
Posture clothing can be a comfortable and practical solution for problems induced by poor posture, or it can act as a supplement to training, exercise and physical therapy. Your posture has an influence on your physical health and overall well-being, so having aligned posture benefits us during work, training and in everyday life.
How does posture clothing work?
At ActivePosture.co.uk you can purchase clinically tested and medically approved posture clothing from leading manufacturer, AlignMed®. Our products are inspired by the concept of Kinesio-taping, which stimulates muscles, improves blood circulation and can aid in maintaining an aligned posture. Our posture clothing can be worn in everyday situations, whether it is during physical activities or when you are stationary.
Who is posture clothing suitable for?
Pretty much everyone can improve their posture from wearing posture clothing. It is also particularly beneficial to supplement physiotherapy and training, however, if you have a recent injury, we recommend consulting a physiotherapist or doctor before use.
ActivePosture offer products for both men and women in several different styles and colours. There is a classic v necked vest top, in petrol blue, white or black for gents or blue, nude, white, black or burgundy for ladies. A zipper fronted vest is available in both black and white for gents and ladies. There is also an AlignMe Interactive bra available in 4 colours.
The website gives clear instructions to measure for your posture vest and suggests that if between sizes you should opt for the smaller as the top must be snug. At 5 feet 8 inches and taking a 34 A/B bra, I wear a UK size 12 and ordered a Medium which fits well. I can’t comment for fit for ladies with a larger bust size, but please be aware that the vest is not fitted with cups.
My vest arrived quickly and was beautifully packaged, creating an excellent first impression for the product inside. The vest itself is made from a mixture of nylon, spandex and polyester and beautifully constructed with Neuroband support straps throughout the lower neck, shoulder and back area. These bands are all made from different levels of elasticity and exert different pressures on the body. I had requested a zipper version for ease when putting the vest on and taking it off – this is because I have recurrent dislocations, arthritis and chronic pain particularly in my right shoulder.
My Trial Period
I have had my vest since the beginning of February and was advised by the company to gradually build up the wearing time. The recommendation is to start wearing for an hour per day, but as I have a specific condition that means my connective tissue and joints work differently to the norm, it was suggested that I use it for 30 minutes per day.
The vest does feel tight initially and the shoulders need to be fitting correctly – if the vest is the correct size it is possible to feel a gentle pull across the shoulder blades and muscles, and this increases if the wearer begins to round their shoulders. There is also support around the lower back lumbar region too.
After building up wearing time over a 2 week period, I then opened a drawer and suffered a severe (even by my standards) dislocation which left my arm hanging low, immobile and in a great deal of pain. It took approx 2 weeks before the humerus would even pretend to stay in the socket…….and most days it continues to slip out as I cough, sneeze or just move! During this initial fortnight my pain was too severe to wear anything snug, but I had a long planned theatre trip and made the decision to wear the vest in order to try to support my shoulder – my main reason for wishing to trial the product.
I found the ActivePosture product to be of a high quality and very comfortable to wear. I have washed it several times, following the manufacturer’s instructions and it has maintained the shape and washed very well.
Please remember that my anatomy is slightly different and I am looking at the product for a different support – but I believe that for pure posture support and to run alongside physio programmes, this product works very well. I have worn the vest whilst sitting both at a table whilst typing and also relaxing in an easy chair and was definitely able to feel the posture support that it encourages.
I am not unrealistic and did not expect the vest to hold my shoulder in socket or to prevent my dislocations. If only it were so simple! My physio has always said that when dealing with my shoulders he must forget all that he has been taught, and instead work with me in the opposite way to how he would treat everyone else!! But I had been hoping that the vest would offer my joints and lower neck some support and I am delighted to report that it does. I have not worn the vest whilst my shoulder is completely out of joint – to be honest it is difficult to wear any top – but I have been wearing it when the shoulder/s are in the normal (for me) state of constant subluxing. My preference is without a bra underneath. I have found that the top acts rather like a compression garment and offers my stretched muscles and ligaments gentle support, whilst I hope also encouraging the muscles to do a little work themselves. (Please note that I do regular exercises when I am able to prevent too much deconditioning).
I have also noticed support across the lower neck where I have several vertebra that have a tendency to “pop” in and out. This leaves me at times with a “dowager’s hump” and I genuinely believe that the Neuroband support mechanisms in this vest have helped with better positioning and pain control. Many of you will also be aware that I have had major surgeries on my lumbar spine over the years, and a very pleasant surprise has been that this vest also gives me support and compression around this region – gentle compression (actually sometimes full on pressure!) really helps manage my nerve damage and pain.
So what of that theatre trip? Whilst still in an immense amount of pain and needing morphine for pain management, the vest helped me to sit through a loud and vibrating musical theatre experience. Since then I have also worn it to cinema film showings and out to dinner – it sits neatly and snugly beneath clothes and I have increased my wearing time. It is important to understand that the vest should be used in normal circumstances as an aid to better posture, so shouldn’t be worn all the time. You must work your own muscles too!
Have there been any negatives?
The vest is made from synthetic materials so can become quite hot and sticky in warm conditions – however it does look like a “top” so I have stripped off on the odd occasion and still felt dressed!
The ActivePosture products are expensive at a first glance – particularly as many with chronic conditions are unable to work and like myself rely upon benefits for income. The vest top retails at £99.95. However I would now say that for a product that has given me both support with my joints and my pain that it is worth the expense……I can see the research and engineering that has gone into creating a quality product and I would rather forego other clothes/meals/coffees in order to own a product that will give me support on those bad days.
In fact my final endorsement has to be the fact that I have been bought some more vests by a relative (taking advantage of the current offer!) as I love it so much!
The ActivePosture vest is a 5 star product for me!
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The company currently has a special reduced price for the products and are offering a volume discount – visit the shop here. (Note: this is not an affiliate post and I do not benefit from any orders made)
For information about research behind the product visit the site here.
To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”. I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.
So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:
1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?
Guest Post: ‘Claire’s Story.’
January 1, 2019
Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)
I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds
The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue. Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.
POTS is condition that affects the circulation on changes in movement, temperature. When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out! This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.
Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.
EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage
My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic). I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).
The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history. Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms. I was given a diagnosis very quickly, but no support or follow up – was told that my management needed to be local.
But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42
To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!
Thank you so much to Bethany for having me as a guest blogger!
A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.
I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton. I think you will agree her own Versatile Blogger award is very well deserved. Thank you, Nikki, so much for nominating me!
1. If you are nominated, congratulations – you have been awarded the Versatile blogger award!
2. Thank the person who gave you the award and include a link to their blog.
3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.
4. Nominate those 15 bloggers for the Versatile Blogger Award.
5. Tell the person who nominated you 7 things about yourself.
At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come. I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post! So here goes…….
I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum. It can affect any body part that has collagen/connective tissue. I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain. Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
I was a nurse in a former life. It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration. My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years. 2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts!
I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to book clubs and will read just about anything. I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
I am a mum to 3 young adults aged 22, 19 and 16. This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older. I guess my parents would agree!! Let’s hope that the next 12 months are less of a rollercoaster….
I love dogs. All shapes, sizes and colours. I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum. He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire. He is completely in tune with my bad days and is very protective of me. We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits. Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!
I make celebration cakes. Not professionally, but for friends and family. I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing. The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!! The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby! Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching! These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”. We are both looking forward for the next season of Dark to be released in March!
There you have it – seven things about me, with a bit of looking back and looking forward thrown in. Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?! I am happy if I can go into the new year with some positivity and hope!
Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t. You are all still versatile!
Last month I was fortunate to be invited to attend a special day at Gatwick airport to receive information about the Accessibility plans that are in place for travellers. We – hubby and me – joined a small band of fellow EDSers (Ehlers Danlos syndromes) and other families with mobility issues, autism, Alzheimers and various “invisible” chronic health problems in order to experience “a practical overview of airport processes before actually travelling”.
Travelling can be a stressful experience at the best of times, but add a disability/special need/illness into the equation and this stress is magnified 100 fold. Accessibility issues affecting wheelchair travellers have recently hit the UK national press with the stories of BBC journalist Frank Gardiner and athlete Justin Levine. Each man arrived at his destination to find that his own wheelchair had been lost, resulting in Mr Gardiner sitting on the plane for an additional 90 minutes after landing at Heathrow and Mr Levine rejecting offers of an attendant wheelchair at Luton. Whilst Gatwick and several other UK airports have previously run Accessibility days, this particular session could not have been better timed in order for the airports to improve Accessibility profiles.
Each family was allocated a time slot and we were met at the Virgin landside airline desks where we were checked in and given the recently launched sunflower “hidden disability” lanyards. The distinctive green and yellow lanyards are to allow staff to easily identify travellers who may need additional assistance, but might not have an immediately obvious disability.
Chronic pain, autistic spectrum disorders, Alzheimers and dementia, fibromyalgia, chronic fatigue syndrome, Ehlers Danlos Syndrome, IBD/Crohns/Coeliacs, mental health disorders are just a few of the many conditions that might benefit under this scheme. Members from both the police dog handlers and the border patrol were present to welcome us but it was their beautiful dogs who stole the show. Eighteen month old springer spaniel pup Gracie was a personal favourite of mine!
Do you know that there is an Accessibility and Families’ check in and security? The whole process for the average traveller has changed so much in recent years and it can feel that everyone is wanting to check in at a million miles an hour……electronic check in from home, travelling with hand luggage only, business travellers wanting to get from A to B in the least time possible. How does it feel if you take a little more time than the average person, if your child doesn’t understand what is happening, if anxiety turns into a panic attack? We were assured that the Accessible and family security can be used for anyone who needs a little more time, space and understanding. I wonder how many of you have used this facility? Please share your experience!
Last weekend Virgin airlines and Easy Jet were our hosts for the day, but I believe that other travel providers have played the host role in different locations around the country. This was my first time to go through airport security since having my spinal cord stimulator implanted for pain control and in the same way that I am not able to go into an MRI scanner, the magnetic fields in the security scanners prevent me from going through the arch. Like a pacemaker, the magnets in both devices would cause damage to my battery/programmer needing surgery to remove and replace the device. I carry a medical alert card like others in my position and whilst my condition is now “visible” due to my wheelchair, for many with chronic pain and a similar implant, it would be impossible to see their chronic condition. The security staff responded well to my needs and as hubby put my bag on the scanner and took himself through security, I was taken round the other side of the scanners and whilst remaining in my chair, a female office carried out a simple body search. I passed and didn’t set off a single alarm!!
First stop – the “V” room. This is Virgin Holidays’ new lounge in the North terminal which is for the use of Virgin customers booking a Holiday/Flydrive Package – it can be pre booked or booked on the day for each passenger. We were treated to hot drinks and a tour from very attentive staff who are eager to please and answer queries. I know that this is part of their jobs, but we were impressed by the welcoming demeanour, general knowledge and the care shown to us.
If you are not on a Virgin package or do not wish to pay to book the lounge, Gatwick North terminal has a newly opened Accessible “Quiet” lounge area located within the departures lounge and shopping area. Here it is possible to sit in more comfortable seating, away from the crowds with screen information to monitor your flight and yet still be close to the amenities and eateries in the departure lounge.
I was using my own wheelchair and pushed by hubby, but there are many of you who don’t normally use a chair, yet walking through the airport prior to boarding your plane is just exhausting. If you give the airport notice – 48 hours – it is possible to be helped by staff with a wheelchair, as some of our group did for their tours, or to make use of one of the accessibility buggies that you will have seen speeding through the airport. My advice – don’t be too independent and insist on walking if this burns you out before even setting foot on the plane. I have always been the world’s worst for doing this, but accept now that pride really can come before a literal fall!
We were taken to the Sensory room next – the first area of its kind in a UK airport. It is well recognised now that special sensory lighting, music and surroundings can greatly enhance senses and communication for a wide variety of sensory abilities. My limited experience (when nursing) brought me into contact with such areas in children’s hospices and hospitals. A room of this type can be extremely helpful for both children and adults with autistic spectrum disorders, physical and mental disabilities – I include dementia and Alzheimers here. The room is airside and only for use by those passing through security – a 45 minute session can be booked at the special assistance reception in the departures lounge. On the day youngsters in the room appeared to be having a great time, but there were few adults with disabilities when we had a quick “peek”. There is a variety of soft play cushioning and this is geared towards those able to sit on cushions and beanbags. It is important to book ahead as there is an 8 person limit. I think that the premise is fantastic and it is a very welcome addition to the airport experience – suggestions to add to this are:
for a further focus on use by adults;
to create wider aisles between the soft play areas for wheelchair access – the space is limited;
to consider how different groups might relate to each other – adults, children, physically disabled, autism spectrum disorders, etc;
to ensure that the knobs and buttons on the activities are able to be accessed by those with hand problems;
to consider in the future expanding the existing room or have several sensory rooms to cope with the high demand that the facility will undoubtedly have! Disclaimer: Please note I am not an expert and do not have autism
For someone like me who struggles with walking and stairs, the thought of using steps up to a plane is akin to climbing a mountain. It is encouraging to know that if an aircraft is using steps rather than a jetty boarding system, Gatwick airport has a fleet of German Bulmor transporters that wheelchairs can be strapped into and lifted via a hydraulic arm directly to the door of the plane. This allows the passenger entry to the plane in their own wheelchair to then transfer directly into their plane seat. We enjoyed a short ride in the Bulmor and the experience of the cabin lifting and lowering, all whilst I sat in my chair. For younger members of the party there was an opportunity to board the huge airport fire engines and to have a go at operating certain controls.
The part of the day that I was most excited about and also feared was boarding the plane – my greatest anxiety over the years has been the thought of feeling trapped in an aircraft seat and my back pain becoming uncontrolled. I can move when seated on my sofa, in a restaurant or even the cinema, but sitting in a car or a plane is a different story. Unless you have experienced chronic nerve pain, it is difficult to explain what may seem to be an irrational fear of an exacerbation of this pain and being unable to do anything about it. I was able to remain in my seat up to the doorway at which point I got up from my chair and transferred into one of the first rows on the plane. The Easyjet cabin crew were keen demonstrate that they can offer assistance and a comfortable flight to any passenger with accessibility needs.
Whilst hubby chatted with the pilot in the cockpit……
I was told about booking my seat in advance – it is advisable to pay the extra to select your seat for leg room, the aisle, to be near the loo etc etc – alerting the airport and the airline of your needs 48 hours in advance, and that my wheelchair would be stored in the hold after I have transferred to my seat. Tip: take your seat cushion onto the plane as it is likely to be lost in the hold! The loss and damage of wheelchairs has been in the media recently and is a very real concern for many wheelchair users – one lady cited the issue of “which end of a flight did the damage occur to her chair?” as no one would take responsibility. No easy solutions to this one as yet. The current policy is for accessibility passengers to board the aircraft first, in order to have time to settle and as much assistance as needed without the stresses of other passengers. Once in the seat there is a small onflight wheeled chair (similar to a fire chair) for those needing assistance to move about on the flight, go to the loo etc. I did find the seat comfortable and was in the area with more leg room – I don’t believe that I or others with EDS/chronic pain/arthritis/ fibromyalgia etc would manage with less leg room and the angle of the back of the seat is very important too. The new EasyJet seat backs are fixed and I am pleased to say that they are not in a too upright position, but I would be unable to manage in a fixed seat that was very upright as my SCS would be cut off due to the position in my spine.
I asked about facilities at destination airports and the staff were very honest. Apparently there is a European standard for Accessibility arrangements but they are open to interpretation and this means that they will vary from airport to airport, country to country. This is obviously the case when flying elsewhere in the world too, so the best advice that I can pass on here is to fully investigate your holiday plans, journey and the accommodations made at your destination prior to any bookings!
EasyJet have an Accessibility and Assistance manager, Celine McGuigan who is informative and very keen to make airport travel accessible to all. She is also notably keen to understand the needs of the Accessibility community from those with very visible disabilities to invisible problems/illnesses – in fact she has made staff, including those at a senior level, spend time in a wheelchair in order to focus minds on accessibility issues! The young members of cabin crew are also to be commended for their knowledge and enthusiasm to help without ever being condescending or frightened to ask me questions.
Feedback from the visit:
just how accessible are the aircraft toilets? They are very small and is there room for the small wheelchair and a helper to assist with a transfer? (I am aware that this is an area up for discussion around the design of both aircraft and trains);
people with allergies, mast cell activation syndrome and similar can be very sensitive to scents – some have experienced problems with the scents used to refresh the cabins and I know that the staff were going to look into this matter;
for staff to be aware during a flight that with conditions such as EDS, joint pain and cramps are a common problem and the passenger will undoubtedly need to stand and stretch;
for many the standard seats do not provide sufficient room, yet the seats with more “leg room” can come at an extra cost which can be difficult to swallow for those on an already reduced income and/or families with young children
I know that they have been in the media, but to continue to highlight the accessibility lanyards and the fact that many adults and children with “invisible” conditions will be using them; work with the community who will be using them and listen to feedback regarding wearing a lanyard and the design.
I can only congratulate all the staff involved for such an informative and practical day at Gatwick airport. More of these days across the country would be a huge benefit to so many people and the comments that I have seen from other groups have been very positive. My own fears have been put to rest and whilst I am under no illusions that air travel for me personally will remain tough and very tiring, and of course I still have some concerns, I do now think that I can do it.
So come on hubby….where are you taking me?!
Please note this has been written from my personal perspective