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!
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!
Pin for later
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.
There should be a Saturday on that title, but I am a day late which just about sums it up!! But I had to join in this week, no matter how late, as the prompt was clearly written just for me. I spotted Linda’s Friday prompt and it seemed to call out to me…..”Claire, Claire this is for you”, but the very thing relating to the prompt has been the same thing stopping me from typing, from letting my brain and my body work together, cohesively.
The prompt “Your Friday prompt for Stream of Consciousness Saturday is “-ic or -ical.” Find a word that uses the suffix “-ic” or “-ical.” Bonus points if you use both. Have fun!”
How many times do I use the suffix “ic” in the course of my blogging? Just about every post. Let me see – chronIC pain, chronIC illness, chronIC fatigue, chronIC bloggers, chronIC community. But when does pain or illness become CHRONIC? In fact what is it before this?
The definition of chronic is “persisting for a long time or constantly recurring” – so how long is a long time? When does pain cease to be acute and cross into the chronic stage? How does a chronic illness earn that tag?
In a previous life, I was taught that a general rule is that when an illness has persisted constantly for 3 months or more, it can be thought to be chronic. The illness may have slowly crept up on the individual, or gradually worsened increasing symptoms and disability. With chronic pain, the pain itself often takes over and actually becomes the “illness” as the individual lives with it day in and day out. Acute illness and pain is sudden and dramatic, but usually short lived in contrast to the never ending spiral of chronic conditions.
My own chronic dislocations, chronic pain and chronic brain fog have seen what can only be described as some comical situations over the last 48 hours (yes got the ical in too!!)……having literally gone down a rabbit hole in true Alice style, I shot out of my wheelchair and dislocated the shoulder(again…groan) and the opposite ankle. In my bedroom that evening my ever helpful kids were taking a long time coming, so yours truly decided that hopping on the good leg was the obvious solution to get to the top of the stairs. One failure of knee joint later had the young engineer, lovely girl and yours truly all collapsed in a rather strange heap……but why was I crying with laughter??? Strange things happen with these chronic problems!! Got to laugh though….
But did you know that Chronic can mean something else entirely? I discovered quite by chance that it is the name given to a particular strain of cannabis……ironic or fitting I wonder, with the increased debate over the use of cannabis and CBD (cannabidiol – THC psychoactive element removed) for chronic pain and illness?
Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began. Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial. Just over two years ago I became the recipient of an implant. So much has changed in this time.
The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage. Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!). So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick! Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly. Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty. She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to. Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain. I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.
So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too. At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine. The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue. But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily! So when the nurses express surprise to see me so altered, it won’t be because the scs isn’t working – would I have it done again? In a heartbeat as it has given me a way to manage some of the pain.
But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain. They might not be able to get rid of the rust, but will report back when I am wired for sound!