It is half term break already – how did that happen? It feels like school has only just gone back! Anyway we and the lovely girl are doggy sitting for friends this week, whilst our own old boy, Sam, has his holidays at his human grandparents. I’m not sure if I have mentioned before but he was a rescue dog many years ago and the one foible we have never got him over is his dislike of other dogs. So he will enjoy a quiet week in a calm house being spoilt with his favourite breakfasts and gravy on his grits!!
Sharing a chronic moment!
Last night, feeling slightly energetic, I walked Sam up the road to my mum’s house. I say walked….I’m not sure who was the slower, me or the dog. If we had been going any slower we would be stationary and hubby was alternately pushing and pulling us. We dropped Sam off and then continued the slow amble around the block heading back home. Now when we had left home I was quite spritely – for me – so pooh-poohed the need for my wheelchair, taking just my stick and feeling quite invincible. Big mistake!! Half way back (it really isn’t far), and whilst going downhill, one foot was completely numb and the kneecap on the other side had dislocated….double whammy! By this point I had a fit of the giggles but hubby, who was inelegantly hauling me along the road, did not see the funny side. No more outings for me without wheelie back up!!
Talking of which the new car should be arriving soon, thanks to Motability agreeing to take back our current model so that we can have something that has a hoist fitted to take my new wheelchair. Once I have figured out how to get it out of the house we will be sorted!!! I am still waiting for an OT assessment which I hope will highlight the need for ramp access to the front door (amongst other things) – meanwhile we continue to encourage Sam to use the ramp outside the patio door rather than attempting, and failing, to jump off the side of it!
The young engineer is in San Francisco – a little bit of work, but mainly play. I had a message to say that the Air b&b is “OK but doesn’t have a kitchen” to which my response was well he only knows how to prepare tuna with pasta so doesn’t really need one! We have been introduced to the Forbes magazine lists this week – no I didn’t realise that they do the rich lists. Anyway the young engineer and his business partner have somehow made it onto the Forbes 30 under 30 Europe Manufacturing and Industry list – the lovely girl is just staggered that her brother features on the same series of lists that Jess Glynn and George Ezra feature on (yes, yes..different category!). Maybe one day it will be the rich list and he can keep his mother in the manner to which she would like to be accustomed….dream on, Claire!
This is a special post today and it feels fitting that it falls on Valentine’s Day. It combines a very rare chronic illness alongside a review for a book that I hope you will agree is a labour of love.
Have you heard of Ohtahara Syndrome? No, me neither. It is a very rare form of epilepsy and seizures usually start before the age of 3 months, often in the first days after birth. In fact after birth and the first signs of seizures, some mothers realise that their baby has been having seizures whilst still in the uterus. This form of epilepsy does not respond well to traditionally used seizure medications and treatment is very difficult. Many babies will be floppy, have difficulty feeding and suffer repeated daily seizures. The prognosis is poor. (Epilepsy.org.uk)
Leo White is a little boy who has Ohtahara syndrome and suffers many seizures daily that are as yet uncontrolled. When I was asked to review this book that his mother has written for him, I was delighted to be able to.
Many thanks to Leo and his family, the publishers and Love Books Group Tours for giving me the opportunity to read and review such a special book.
Pin for later
Leo and the Lightning Dragons
Leo is a knight, probably the bravest knight, and he fights dragons. But the dragons that Leo fights are not normal everyday dragons, they are huge, lightning dragons inside his head. Everyone around Leo tries to help, but they can’t tell when the dragons might strike or for how long. The people of the kingdom and Leo’s parents all think this is so unfair and they try all sorts of special actions to help destroy the dragons, but Leo doesn’t seem to be strong enough to shake them off. But one day Leo becomes very angry and decides to fight as hard as he can, making him the bravest knight in the land.
This is a wonderful children’s book written with love and personal experience, and is beautifully illustrated by Gilli B. I am an adult who is able to understand the analogies cleverly used by Leo’s mother to describe the seizures that her little boy fights on a daily basis. The lightning dragons inside his head depict so well epileptic seizures, and I can feel the frustration that the potions from witches, the music from minstrels and the special food from the wizard can do nothing to help – so often medics are unable to find suitable treatments for chronic illnesses whether this be medication, complimentary therapies or special diets.
But what of the child reading this book? It is perfect to become a favourite bedtime story for the early years, with its pictures of knights, dragons, witches, wizards, kings and queens.
But it is also perfect for an adult to introduce to a healthy child the idea that some people have different battles and these are against things inside their own bodies. This need not be done in a scary way and indeed it isn’t in the book, as Leo the knight shows just how someone can battle with their own demons….or dragons in this case.
Leo’s mum also suggests ways at the end of the book to make this a “sensory” story and really bring to life the battles – wonderful and inclusive for all young children, including those with additional needs. What child wouldn’t love using foil to make crackling, lightning sounds, slime to be witches potion or blowing bubbles from the cauldron? And we are told not to forget the cuddles! Find more ideas on the website.
The royalties for the book are being donated to the Childrens Hospices Across Scotland, who continue to support Leo and his family and many others like them.
Leo’s mum says “Every day, my husband and I are amazed by Leo’s sheer determination and refusal to give up and we could not be more proud of our boy, the bravest knight we’ve ever seen.”
This is a lovely book that brought tears to my eyes, but will bring hours of fun to so many children. On Valentine’s Day what could be better than this beautiful love letter from parents to their brave little boy – a true knight!
“Gill wrote the story before Leo’s first birthday. It was a difficult time and Leo was having huge numbers of seizures every day. Feeling that Leo deserved a happier story, one in which his strength and bravery was rewarded, Gill wrote one for him.
She approached Gilli B, a Fife based artist, after seeing her artwork online and loving her whimsical and quirky style. Although she was only originally commissioned to do a few illustrations, she actually loved the story so much she asked to illustrate the whole thing and Leo got his own ’book’ for his birthday!
The following year, Gill had packed his book for a visit to the CHAS Hospice Rachel House and came back one day to find that the nursing staff had read it and written the most amazing comments inside.
Bolstered by their enthusiasm, Gill approached Edinburgh author Peter Burnett for some advice on how to get the book published. He took the book to Clare Cain at Fledgling Press, who fortunately loved the book. Fledgling Press do not normally publish children’s books but made an exception in this case, to help raise awareness of Ohtahara Syndrome and CHAS – Children’s Hospices Across Scotland.”
This is the week of love with Valentine’s Day fast approaching – red hearts, champagne, velvet wrapped boxes of chocolates and of course red roses. The shops are adorned and the internet is overflowing with suggestions of how to spoil your loved one. The thing that I would just love for myself is a week of sleep. Forget being wined and dined, fancy foil balloons or expensive flowers…..the secret to unlocking my heart is to give me sleep!!
Seriously I need to find some self love this week after a week of sleep deprivation. I never sleep brilliantly, but this week has felt like working night shifts again. I no longer panic in the night, but read from a dimly lit kindle or listen to dramas on the BBC radio iplayer or play soothing sleep mixes on Youtube. The problem comes half way through the next day when jet lag hits and after 3 sleepless nights this week it has well and truly hit!! Thursday night was one of these nights, but I didn’t drop off to sleep until Friday afternoon. By the time hubby woke me at nearly 7pm it was time to go out to play…..a takeaway with some close neighbours. Curry for breakfast – can’t remember the last time I did the equivalent! We had been tasked with taking liqueurs and wine – easy. Unpacking the bag when we arrived we had red wine, white wine, limoncello, espresso liqueur, coffee cream, sambucca, oxynorm……what??? Oh no, don’t panic, just a little something for Claire and her pain!
Something that did cheer me up this week was reading that chocolate shaped as hearts is calorie free…well, who knew? This is something that I am totally believing for the whole week, so come on hubby remember how the lovely girl and I have always woken up to a chocolate heart on February 14th? I promise never to say again that snoring from the other side of the bed requires noise cancelling headphones!
I haven’t given you a list of lovey, dovey red heart posts, but rather a diverse selection of blog posts. They range from the breakfast pizza, to giving empowering compliments to girls to random acts of kindness. My favourite has to be the slow cooker fudge brownies – there is a situation where the stomach rules the heart. So sit back with a cuppa, or maybe a glass of something bubbly and enjoy some great blog posts.
So you have probably already noticed that this is a day late, but somehow after reading and scheduling posts as admin for a Facebook group (Chronic Illness Bloggers – there are some seriously talented writers over there!), finishing a book review and just family life, I ran out of time yesterday. But I have found some great posts so thought I’d share them today!
This last week I have taken advantage of the cold weather and being sofa bound by catching up with reading blogs – I have managed lots of sharing but have been a bit rubbish at posting comments, so I apologise to my fellow bloggers. Do you know that the nominations for the 2019 Bloggers’ Bash Awards are now officially open? There are some great new categories this year so take a look and make sure you nominate your favourites!! You may even decide on someone in the list below – there is a great variety and some are new to me. I particularly enjoyed the Verve View post about the good side of social media and the post from Sonja “Shh – don’t tell” made me laugh out loud….I think that all parents will be able to relate to it. If anyone is in need of some pampering have a look at Brooke’s beauty product favs, or if like me you need to declutter then Shelley’s post about the Marie Kondo way might be better…..it would be so much easier if only the rest of the family understood what I’m trying to achieve!!
Pin for later
A high and low point of the week was the last part of the BBC adaptation of Victor Hugo’s Les Miserables – high as the series has been fantastic, low as it was the final instalment. How will Sunday night measure up now?! If you have access to the BBC iplayer and haven’t seen it yet….it is well worth watching. The actors, costumes, set designs, make up (how did they make the beautiful Lily Collins look so awful?) are all wonderful. Those of you thinking “I hate musicals” be assured that there is not a song to be heard – unless you count young Gavroche’s odd little ditty here and there.
Les Miserables cast – from Radio Times
I’m keeping the preamble short today, having given you a long book review yesterday, so grab a cuppa, sit back and enjoy some great reads!
I woke yesterday morning very early, having only dropped off to sleep in the early hours. A couple of hours of unsettled sleep and I knew that my bedfellow, pain was going to kick me about for the day. Despite shivering in the cold early morning, there was that unwelcome yet familiar thin, feverish sheen of sweat all over my body that only comes with deep, intense pain.
Pin for later
The strange thing was that I couldn’t quite tell where the pain was. Start from the feet and move upwards:
feet and ankles: pain, check; left nerve pain worse, check
lower legs and knees: pain, check; left nerve pain burning, check
thighs: burning, check;
hips: can’t move them, searing pain, check;
lower back: don’t even go there, hurts too much, check;
chest: every breath is creating pain somewhere else, check;
shoulders: both dislocated: do not move, check;
arms and hands: numb, yet burning, check;
neck: spasm and screaming, check;
head: did I drink last night???
face and teeth: really??!! Yes!
The problem with this pain is that when it peaks nothing will help to reduce it. No amount of drugs, distraction, heat or other remedies will help.
Pain is deeply personal. Your pain will be different to my pain. My own pains are different – the neuropathic back and leg pain I experience from nerve root damage is very different to my other EDS pains. Our pain might be in the same part of of bodies, but we will probably describe it differently and it will behave differently. The same bedfellow taking a different journey to reach the same location.
When my constant companion reaches these dizzy heights, even my spinal cord stimulator struggles to jumble and alter the pain messages received by my brain. Some professionals believe that chronic “neuropathic” pain signals are processed by the brain differently, making it more resistant and much harder to treat. I honestly don’t know and when it reaches these levels, I don’t care.
“Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.” NHS Inform
“Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.” WebMD
There are many definitions for “pain” available and there are also definitions on American sites & Wikipedia for “intractable pain“.
The ensuing brain fog means I lose clarity of any situation and irrational behaviour follows. “Mum, why are you trying to do housework like a mad woman?” asks my teenage daughter…..just because!
because I can’t sit still
because my brain has gone into overdrive yet feels like candy floss
because I can’t think straight
because I can’t stand still
because I feel sick
because I have to do something
because breathing hurts
because doing nothing hurts
because doing anything hurts
because I don’t know what to do to make it just F.O!
Remember the old rhyme “Rain, Rain Go Away, Come again another Day”? Mine goes like this “Pain, pain go away, don’t come again another day!” In this state pain killers just make me vomit, they don’t help anyway. My beloved heat pad gives a little relief for a short period, but my body seems to know that the external temperatures have dropped despite central heating and layers of clothes.
This pain is exhausting and all consuming. Eventually I am overcome and sink into a heavy, pain ridden slumber under a weighted blanket yet wake several hours later unrefreshed and still in pain. What is to be done? Watch the weather forecast, curse the temperatures (I know Chicago and other places have it a LOT worse, but my body doesn’t know that and anything near zero degrees is horrendous), try distractions and sit it out knowing that this peak will pass.
Another day may feel wasted – another day of being unable to function, to be online with like minded pals, to read, to watch TV, to listen to music. But this will calm, it will reduce from the peak to a trough and tomorrow is another day.
So today….I am here, I survived. I am still in pain and currently sitting charging my spinal cord stimulator as I really can’t cope with turning it off during this cold weather. The Six Nations rugby is on and feel like I have been in one of those scrums! My other pains are vying for attention now….when the nerve pain is at its worst the others fade into background noise, but today the shoulder and gut pain are shouting loudly.
But here I am typing, smiling, talking and tomorrow is definitely another day!
There have been two big events in our household this week.
Pin for later
The first has been the lovely girl having braces fitted, following the removal of a couple of teeth the week before. A common problem associated with hypermobile Ehlers Danlos Syndrome is dental overcrowding due to a high arched and narrow palate. I had 6 teeth removed as a teen and for a while sported a lovely pair of fangs as teeth erupted from the wrong place. Both my boys have inherited my narrow face and dental overcrowding – the young engineer required surgery to open his gums to expose teethe and apply chains to them which were then attached to braces, the politics student had teeth removed and braces.
With her different bone structure we thought the lovely girl had missed this particular joy of EDS, but it was not to be. Her last trip to the dentist resulted in a “dental emergency” as he said she needed baby teeth removed urgently and orthodontist treatment asap……oh and Merry Christmas. This rather extreme reaction (I mean I didn’t know there was such a thing as an orthodental emergency!!) was probably down to the fact that the dental surgery had forgotten to make a referral 18 months ago, but I just assumed she was still on on the waiting list. So the lovely girl is about 2 years late at 16 to be having braces and will need the same surgery as her eldest brother. She has made little fuss, but was ashen the following morning and is now sporting a very sore mouth. Her lovely brother of course fed her lots of horror stories!!
The second big event was Burn’s night and the annual celebration of all things Scottish at the lovely girl’s school. This year we took mum and her friend, along with two other couples to add to our number and swell the tartan brigade.
A wee dram of whisky sour started the night of nicely followed by the piping in of the haggis and the traditional Robbie Burn’s toast – delivered beautifully by a Scottish teacher fully decked out in kilt and sporan. Now hubby was half decked out, having borrowed a jacket and bow tie from our friends’ son…..he wasn’t brave enough to try the kilt though!
Whisky Panna Cotta with raspberries
Haggis with tatties and napes, followed by whisky panna cotta went down very well to be swiftly followed by a Scottish reel or two!! This is the part of the evening that brings mixed feelings as once upon a time I would have been the first on the dance floor, but must now be content to watch…….but the best part is sitting and watching everyone go the wrong way, bump into each other and screech with laughter. At one point I swear that the group mum and hubby were dancing in were doing a completely different dance to the rest of the hall.
Confused??
Granted it was nigh on impossible to hear what the caller was telling them to do…..but at times there was not a dry eye in the house with all the laughter. Maybe next year I will have my motorised wheelchair sorted and be able to literally run rings around them – can’t transport it until our new Motability car arrives!
Got it! Hubby with friend
I think that the majority of these blog posts are new bloggers to Monday Magic this week and vary from recipes to writing tips to self care/health posts. There is even a post for all you introverts out there. I really hope that you enjoy these as much as I have – so grab a cuppa, sit back and read some great posts!
Every month I have great plans to take part in link up parties and then life seems to get in the way of writing. One link up that I particularly love is Sheryl’s on A Chronic Voice where she gives prompts aimed specifically for people living with chronic illness to express themselves and share experiences. January seems like the perfect month to join the party again…..so here goes!
Dedicating
This is a great prompt for a new year isn’t it? It could also be very cheesy!
I think that I would like to be dedicating more time and energy to working with fellow bloggers this year. Sometimes I see others who give so much of their time to commenting on and sharing the writing of others (Sheryl at A Chronic Voice, Caz at Invisibly Me, Esme at Esme Salon, Sue at Sizzling Towards Sixty – to name but a few) that I feel a bit inadequate in my feeble attempts.
So maybe I should say that I will try dedicating my own time to working effectively and to stop procrastinating. I had a teacher at school (Latin) who used to ask us “what is the thief of time” to which we 11 year olds would chant “pro..cra..sti..na..tion” without having a clue what it meant. Sir…I get it now!!
Establishing
I really need to start establishing some proper self care routines that will see me through both the good days and the bad days. For me self care revolves around reducing stress levels, which in turn will help keep the pain at bay. At the moment “self care” – healthy eating, regular exercising (in our neighbours’ gym – so lucky!), pilates, meditation, mindfulness, rest etc etc – or maybe I should just say putting myself first in my schedule, well it seems to come way down the list of priorities and almost feels rather decadent.
Breaking
I’ve written before about chronic pain and illness being my constant companion and there are so many times that it feels like my companion is putting up barriers for me or tying me down in knots. I want to be breaking through barriers and ties, physical and mental, that are holding me back and stopping me from feeling like the person I used to be, being the person I can be.
This might mean breaking some of the rules that I self inflict and wrap myself up in – one is the need for a clean, tidy house! The biggest problem is that my idea of clean and tidy does not quite match with the rest of the family……this causes me more stress than anything else, and whilst I will try to be more laid back, this will be a tough one for me to break!
Breaking crockery is also something I’d like to do less of in my kitchen!! Dislocated wrists and thumbs frequently equals dropped plates and mugs……BREAKING!!
Strengthening
Strengthening has to apply to my core!! Whilst I was still mobile and fit, I practised yoga daily and attended classes several times a week, and had even been asked to train as a yoga teacher by my teacher! My back has been troublesome ever since my surgery aged 21, so it has been important to keep my core muscles strong to support my weak back. I wouldn’t boast a 6 pack, but I had a very flat stomach which pinged back after each of my 3 caesarian sections! But….since turning 40 and my mobility and health have gone into free fall, those core muscles have gone into hiding……apparently muscle memory is a thing, if I can only coax them out.
Allowing
I am not very good at just allowing myself “to be” – to accept my own limitations that come with my condition, to acknowledge the bad but to celebrate the good.
I want to allow myself to take a rest without beating myself up; allow myself to say “no”; allow myself to sit and just be without feeling guilty. Most of all I want to allow myself to accept my conditions, warts and all – accepting is not a weakness, I believe it is a strength and liberating!
So there we have it – my ramblings to add to the thoughts and writings of other bloggers that can be found here on A Chronic Voice. I hope you enjoy them all.
Update….as I type I have a new cleaner in the house – a lovely lady who works for a friend who said she could fit me in…..hurray. Now I just need to make sure I don’t fall into the trap of cleaning before she comes – just nagging the kids to make sure that the floors in their rooms can actually be seen to vacuum!!
PainPalsBlog 