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!
Isn’t it funny how sometimes the simplest of things can floor us? Not the big things – the dislocations, the brain fog or even a recent A&E visit to check out an ankle injury for fractures. Over the last few weeks a new enemy has been creeping up, slowly and insidiously until a sudden movement caused spasm and pain off the Richter scale.
Where? Back pain? Neck pain? Well they still haunt me daily alongside the dislocations, but this is different and affects everything I try to do. One evening several weeks back, my right hand suddenly drew itself up with a sudden, intense spasm into a claw. There was no warning and the pain was searing – in fact I screamed the roof off leaving no one in any doubt that something had happened. Cramp? No, this was a very different feeling as the ligaments and bones within my hand felt as if they had become intertwined and stuck in a confusing rigid medley of pain and spasm.
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Several hours later the claw unwound as quickly as it developed, but the pain, now in both hands continues. Maybe it is a repetitive strain type pain or some of the nerve pain may originate in the problems in my neck, I don’t know, but it affects everything. Holding a cup of tea, brushing my hair, holding a book……and typing! Admin duties for the Chronic Illness Bloggers and emails have been prioritised but typing is painfully slow. Writing my own blogs has slowly but surely slipped away from me.
Nothing in life is predictable is it? But life with chronic illness has “unpredictability” as a middle name – no day is ever the same, it is impossible to know how the body or mind will present itself as it wakes each day. The bigger issues, “the big picture”, can be easier to cope with, but the little things that are unexpected can be the straw to break the camel’s back. The best laid plans can be blown apart, resentment hits, brain fog distorts memory and pain can take hold. Yet life goes on with or without functioning hands!
This has taken several days to type…..hopefully normal service will be resumed soon!
Inspiring blogs has slipped to midweek again, but as I had already found the posts I really wanted to share them. I didn’t get near my laptop on Monday as hubby was filling out the dreaded tax return online – this meant he had 2 laptops and the ipad spread out in front of him and he doesn’t even have a regular job! Who knew that the tax office struggles to cope with zero hour contracts?!
The politics student has returned to university this week, but not before a trip to A&E to check out his knee. I think that I mentioned last week that he had dislocated and then relocated his knee – the pain and terrible cracking continued and we were advised by the GP & a physio friend that he needed to go to hospital to have it checked.
So I duly packed off hubby and son, with flasks and sandwiches…..no, I didn’t but probably should have done as they were waiting for the best part of last Friday. The wait we could understand – there were a lot of emergencies and the waiting room was full – but it was a shame about the attitude of the nurse specialist. Son and hubby explained the problem and were slightly taken aback by the tone used to tell them that A&E is for really sick people!
They explained that the GP had sent them and were apologetic for taking up time…….but where does someone go with this sort of problem? No you are not seriously ill, but you do have something wrong that your GP can’t deal with……no wonder so many of us chronic bodies avoid going to hospital!
Enough moaning, yours truly has had an eventful week and managed several outings between the bouts of neck pain. A curry with friends – a fellow zebra who made contact via this very blog, another reunion at my old school as Chair of the alumni group – a group only 2 years behind me so I knew them which was great, and a National Theatre Live production of All My Sons at our local cinema. If you get the chance to see this it is fantastic – Sally Field, Bill Pullman, Colin Morgan (aka Merlin!) and Jenna Coleman. Getting out of the cinema was a challenge as although the spinal cord stimulator helps with the pain it doesn’t help with the dead leg and immobility after sitting. Good job I have a husband, eh? But it is no wonder I can hardly move today and am happy I have a new furry pal come to stay for a couple of days…….meet Jensen!
The posts encompass various things that have been happening this week – Mother’s Day in the USA (read Willow’s beautiful poem), ME/CFS awareness and mental health awareness. May is the awareness month for many conditions and I will put up a listing on another post – I don’t want to miss anyone out. Don’t miss the inspiring ladies featured at Tea and Cake for the Soul. So grab yourself a drink, sit down and relax!
Did you think that I’d forgotten about “IBFY” this week? I had a blog tour spot for Monday and didn’t want to overdo the musings, so thought a midweek spot might do nicely to share these posts that I had found for you.
We survived our week with hubby away…..just!……..and more importantly he survived an activity week with 64 ten year olds. The weather was really kind to them and he returned looking more like he had been to Spain rather than to Kent, the sun tan covering any signs of exhaustion! At this end I continued to share drugs and my CBD vape with the politics student as he nursed, and continues to, his dislocated knee; there was one faint/fall/dislocation and only one set of plans cancelled. Not too bad going! The lovely girl even managed to get out of bed every morning to do her paper round without her dad dragging her out of bed.
As hubby arrived home, the eldest and a group of friends headed off for Snowdonia, North Wales….to go camping! Pitching a tent in the dark on one of the coldest nights this year – not my idea of fun and I think the young engineer’s better half would have preferred a B&B. They actually had snow and built the snowmen to prove it!
Meanwhile yours truly now has the results of my neck x ray and unsurprisingly it shows disc and degeneration problems in both the cervical and thoracic spine. “Where shall we refer you?” pondered my GP……um, how about somewhere that can arrange new bodywork! I think that my neurosurgeon might go off for a very long holiday when he sees my name on the Back Pain Clinic patient list again. At the moment I have no expectations and want to avoid more surgery – be it on my shoulder or my spine……time will tell!!
I hope that you enjoy this mix of blog posts that I have found this week – I have finished with a short video to highlight pain in Ehlers Danlos Syndromes Awareness Month. So sit back with a favourite cuppa and happy reading!
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!
It is Easter Monday – hope you have had a great holiday weekend! The weather has been just spectacular here in the south of Britain – the young engineer and friends have had a balmy weekend on Hayling Island (just off the south coast, near Chichester) where they donned shorts and enjoyed temperatures on the beach more akin to Club Med!
A huge event for me this week was finally being visited and assessed by a community Occupational Therapist. I can’t even tell you how long I have been on the waiting list, it has been that long!! A big plus was that said OT, Johnny, has had one previous patient with EDS so he was familiar with the condition and knew a little about POTS too. What a difference it makes when you don’t have to teach the medical professional from the word go…..although the spinal cord stimulator was something new to him. It seems that maybe I am more in need than I thought – although the kids would tell you I am needy!! – or rather I might be deemed eligible for more help than I had anticipated. Apparently it is possible for the assessment to recommend a need for a Japanese style loo – you know, one that washes and dries before it flushes (it may even play music….joke!!).
So if the OT recommends it AND the local authority agree it, I might be able to get my electric wheels out of the house via the front door in the not too distant future…..the dog will appreciate a ramp, and a walk in shower to replace the bath and a stair lift might be on the cards too. Watch this space!!
Chocolate has invaded the house this weekend. The kids might be young adults now, but they have still been given a “healthy” supply of chocolate in the shape of eggs, bars and rabbits. I have a complete new shelf of ornaments!
The blog posts for you this week include a mixture of spring and Easter posts, recipes, Earth day and health topics. Grab yourself a cuppa, sit back and enjoy!
Please remember to comment, like and share posts you enjoy – voting closes for the Annual Bloggers’ Bash Awards this week, so it would be great if you would consider voting for me in the Best Lifestyle Blog and many other super bloggers – vote here.
Here I am, already running a day late this week – but as I had already found some blog posts for Monday Magic I thought I’d go ahead and share them today. The shoulder and neck are feeling a little easier and the amount of opioid floating around my system is considerably smaller so I can put pen to paper…….well fingers to laptop!
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So what have we been up to in the PainPals house this week? I mentioned in my last post that hubby made a trip to his parents and left me in the not so capable hands of the oldest and youngest children/young adults! We survived to tell the tale although the crumbs in the kitchen drove me to distraction. On Saturday the three of us joined my parents and various other cousins for a family lunch and I was so pleased to actually make it there. The most exciting thing was being told that my cousin and her partner have booked to be married next year on a cruise aboard the Queen Mary to New York. The funniest thing was that her other half made an announcement, whilst she sat there all embarrassed saying that “it really isn’t a big deal”…….well in that case cousin, I will go to New York on the Queen Mary with your fiance, and then on to Washington and Niagara Falls!! Ha, ha, ha. She doesn’t want to make a big fuss at their “time of life” – mid 50s and 60.
The young engineer was slightly on edge during said meal as hubby was home, but he was taking advantage of a friend’s season tickets to a London football match (Fulham v Everton for you footie fans!) and had taken the young engineer’s better half with him. Would dad show him up? Would he say something really outrageous? No, son – they are both football fans (both support Chelsea actually!) and will have far too much to talk about that will not include you!! Our friend was in Paris supporting his boys in the marathon and was gutted that having lost several matches in a row, Fulham actually won!!
The house is back up to full capacity as the politics student arrived home last night for the Easter break – after false start at the weekend when he was struck down with a migraine (he promises migraine and not hangover!) after finishing an essay….early. I haven’t investigated the bags yet, but there is only so much dirty washing that can be transported on a coach trip…..I think that I might leave a trail of arrows to the washing machine.
I hope that you have had a good week and are ready to sit back with a cuppa and enjoy some fantastic blog posts. The beef and ham cheese roll looks amazing, “Getting Older” made me laugh out loud and Christie Hawkes’s post really gives food for thought. Enjoy!
It has been several weeks since I was here writing – another dodgy dislocation of both shoulder and neck leaving me out of action. I feel so guilty that I have been unable to visit my lovely in laws once again and hubby had to head of for Hereford without me. He left me in the “capable” hands of the lovely girl and even the young engineer has worked at home for a couple of days – I think a fall last week freaked him out and certainly did the dog who broke my fall! Fear not, old Sam is fine!
During my blogging silence I was delighted to receive an email telling me I have been nominated for an Annual Bloggers’ Bash Award (ABBA) – hubby and I attended our first bash last year, met some wonderful bloggy pals and have already bought our tickets for the 5th Annual Bloggers Bash in June. But I never dreamt that I would make it onto the nominee list – thank you!
I am honoured to be nominated and to be in the company of some fabulous writers!
I have been nominated in the Best Lifestyle Blog category along with some seriously good writers. Although my blog has a chronic illness focus, I am also keen to appeal to my readers who don’t have health conditions and sometimes getting the balance right is tricky. So to be recognised as a lifestyle blog is praise indeed.
It would be wonderful if you would consider voting for me – the voting is now open! Please take a look at all the blogs and categories and vote here – Annual Bloggers Bash Awards
Voting closes at 9pm (BST) on 24th April, 2019.
Monday Magic normal service will resume next week and I have some great reviews to share (written in my head!!)
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.
Welcome to the last week of March and another Monday Magic on a beautiful spring day. We have managed two cinema trips this week – yes, two! – to see very different films but both equally striking.
The first was Bohemian Rhapsody and I know that we are very late to the party. The portrayal of Queen and particularly Rami Malek’s performance as Freddie Mercury were outstanding (if sanitised!). It is difficult not to be swept along by the soundtrack of Queen’s greatest hits and then for those of us who remember Live Aid, the depiction of the concert in the old Wembley Stadium was a true trip down memory lane. What I hadn’t expected was to be so overcome with emotion towards the end of the film and find myself in tears by the end. The depiction of a hospital waiting room and a young, emaciated man sporting a a very particular lesion on his face took me straight back to the late 80s and my London teaching hospital.
It was an extraordinary time to be working in one of the few hospital’s with a dedicated HIV and AIDS unit (see my previous posts here and here). As young nurses we were confronted by fear and ignorance of a disease that then carried a death sentence and also by a greater intolerance of same sex relationships. I can remember being asked if I had to touch the patients, or if they had different bedsheets and what happened to their cutlery after they ate!! There were question marks about applying for mortgages and if you sustained a needle stick injury the subsequent HIV test would definitely reduce your chance of being granted a mortgage. Then there was the series of commercials run in the UK by the government – brutal, scare mongering and to the point. But for me the film brought with it a sea of faces – young men – all robbed of life at such a young age. It was the first time that most of us had been confronted by the certainty of death in patients who were in our own age group. We were comforting parents and getting to know groups of friends who might have been our own. Those names and faces remain with me all these years later and as Freddie Mercury declared that he wouldn’t be a poster boy for HIV on the big screen, the tears flowed as I was transported back to that ward in 1990.
Last night we went to a special cinema screening to commemorate the 75th anniversary of the “Great Escape” – that is the actual escape during World War II that the Steve McQueen and Richard Attenborough film was based on. Hosted by Dan Snow, historians were joined by family members of some of the actual RAF men who staged the escape in 1944, and also by actors and crew from the film made in 1963 to depict the events.
One of the stuntmen who set up the iconic Steve McQueen motorcycle stunt at the end of the film had been flown in from New Zealand – he had some stories!! I was really struck by the comment that it was an officer’s duty to attempt to escape and to create as much turmoil for the enemy – the Germans in this case – as possible. These men almost certainly did not expect to get home if they managed to escape, but they did plan to continue fighting and to be a thorn in Hitler’s side. Meanwhile the RAF were amongst those also remembering the men in Poland at the site of the POW camp, where the prisoners had dug out 75 years ago. It was a very long (nearly 5 hours) but worthwhile evening……even if I couldn’t stand up by the end!! When I popped my ankle out, hubby said we needed the inflatable evacuation aircraft chutes to get me down the cinema stairs….cheek!
So today I have been recuperating from my night out and have found a great variety of blog posts for you. I hope that you enjoy everything from the fire eating gutsy goddess to some fantastic tips about plastics and the planet…..sit back with a cuppa and enjoy!