Welcome pain pals and apologies for the lack of interaction this last week. Just prior to last week’s Monday Magic I managed to remove my humerus from its glenoid cavity…..or rather my shoulder had dislocated, yes I know…..again! Honestly my right shoulder is out more than in these days, but this last week has been particularly bad causing a few sleepless nights, much knocking back of morphine and generally feeling pretty low. It really is unusual for me to want to do nothing – to not even be able to use my computer…..
Then I woke up Sunday morning with a beautiful eyeliner applied perfectly to one eyelid in a fetching shade of rose red. You could not draw such a perfect line, although the lovely girl offered to try to match it on the opposite eye. By the time my GP saw it this morning it had changed shade to a purple edged with yellow which now looks more like eyeshadow over the whole lid. She says it is an infection in the lid, but I still think hubby had something to do with it after I poked him for snoring!! (Joke!) However he has banned me from opening certain drawers as that is how the latest “joint parting of the ways” came about, and it is still falling out of socket every time I move. Good excuse not to cook or clean though!
The week hasn’t been all bad for yours truly, as I had tickets to see the sixties inspired West End show “Rip It Up” with my mum. I was worried as I was still feeling pretty rough, but with plenty of cushions for the car journey and then in my wheelchair when we got there, I survived. I feel very fortunate to be able to secure both a wheelchair space and a free seat for my carer – in this case mum had a much more comfortable stand alone arm chair – situated in this theatre in the back row of the dress circle. The show stars former Strictly Come Dancing stars : Harry Judd of McFly, Jay McGuiness of The Wanted, Aston Merrygold of JLS and Olympic gymnast Louis Smith MBE. These boys sing, dance, drum and flip their way through the show. The rest of the cast are such talented singers and dancers – Jill Marie Cooper’s voice blew me away – and there are some surprise turns on screen from sixties icons!
Enough…I’m making up for my lack of typing this past week. I have a selection of very varied posts for you from a cheeky look at middle names to several health posts to concert and book reviews to an interesting smoothie with a twist for my spoonie pals. So grab a drink, sit back and enjoy!
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!!
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!
How often do you have those weeks when life seems to have sped by and yet you’re not sure what you have done in that time? I made a birthday cake with a robin theme – birds that is…..not Batman or Bristol City football club (me to hubby: “why on earth would I make a 7 year old little girl a Bristol City football club cake? She’s not a football fan and lives nowhere near Bristol” – he supported them as a child and still does!). We went out for a family Chinese for hubby’s birthday as my brother and nephew were here – this birthday rolls on and on. I started another blog post – wrote the majority of it in fact, but never quite got it finished (one for later this week) – and I cancelled plans a couple of times. Oh….and I had several sleepless nights.
It never fails to amaze me just what sleep deprivation can do and when that insomnia is down to pain the resulting fatigue and drain is even worse. Now I look back at the many sets of night shifts and then a period working continuous nights when the kids were young and wonder how I did it….much like any other shift worker. The constant tiredness must be akin to constant jet leg, but without any promise of far off sunny climes! I did get phone calls from school on more than one occasion back in the day when I had slept through my alarm and failed to pick my kids up from school. It is one thing dropping off at 8.30am in your PJs and boots, but quite another thing picking up inn your dressing gown at 3.30pm!
My own blog may have failed to spring any new writing over the week, but I have managed to read some great posts that did make the light of day. I have found some great new and very different bloggers on a couple of meet and greets (Danny’s Dream Big Dream Often and Esme’s Senior Salon) as well as some familiar faces. So sit back, enjoy some you time and get stuck into some fabulous reads.
Welcome back to a new week and another Monday Magic! It is a beautiful day here in the South East of the UK and a fantastic start for half term. Of course here in the PainPals house there is only one child on half term and being a teen, we will be lucky to be graced by her presence before lunchtime no matter the weather. The paper round will be done, but then it is back to bed!
For me the week revolved around a dinner at my old school celebrating 40 years of c-education and as one of the original 10 year old girls back in the day, it has been a pleasure to contact others from my generation.
I had fun creating collages from photographs sent to me by old friends and enjoyed a wonderful trip down memory lane with old staff and old friends. Our old headmaster added to this with his speech – several of the boys, now middle aged men, were just as badly behaved during this as they were 39 years ago! – and recalled the incident in the school hall where we all sat for an end of year assembly when suddenly the hall doors flew open and in stalked a rather glamorous young lady. Making her way up the middle aisle between the students, she slowly started to disrobe to the sniggers of the whole school whilst the head was slowly gathering his wits and said he wondered if she was a strippergram or a kissogram. Meanwhile the school deputy, an altogether smaller, older and very conservative man, literally flew from the stage flapping his black gown around him. I can’t remember seeing him without his gown and he always reminded me of a raven about to take flight as he dashed along the outdoor pathways, ruffling out his gown behind him. On this occasion the gown was wrapped around the young lady and he bundled her out the back of the hall into a waiting classroom. The head was a bit disgruntled – well he never discovered if she was a kissogram or strippergram! – as many pupils knew that the 6th form boys had arranged this stunt, including his own young son who kept the secret completely. Little tyke!! We never found out what the deputy did with said young woman after he bundled her out at speed. It never fails to amaze me how the years just fall away when old friends catch up, and we girls had a really tight bond as there were so few of us – only 8 initially and 4 of us attended the dinner.
Lovely to see old friends and feel like a teen for a few minutes! The chronic body stood up to a whole night out very well – not sure if that was down to adrenaline or wine – but needless to say the high is generally followed by a fall, or crash, and this has given me time to find some blogs which I have enjoyed.
So sit back with a cuppa and have a look at these great sites – I hope that you enjoy the variety as much as I did!
Another week has passed, the heat wave in the UK has broken and students across the country have either just received exam results or are awaiting them this week. In our house, the lovely girl will receive her GCSE results this week and remains very calm and level headed. But she can’t get her head around the year group chat that is full of anxiety about grade boundaries and count downs to the “big day” – I agree with her that there is no point worrying about the grade boundaries when you have no idea what grades you have received yet!
The national press is of course feeding this anxiety with articles about the new exams – both GCSE and A level – are they harder, are the grade boundaries higher/lower, have more students done better? I’m not sure we will be able to make head or tail of her results though as half will be the old style A-C grades, with the remainder bearing the new numerical grades 1-9!!
Pin for later
The politics student is currently taking exams – he was unwell earlier this year with chronic migraines so the university deferred exams until now. I actually received a text after his first exam earlier! Maybe it has finally dawned on him that although these first year exams don’t count towards the final degree, he does need to pass them all to go back for the second year……his sister would be horrified to find that both brothers were back home permanently! I’m not sure that my kitchen would cope either…..
I have spent another dislocated week vaping on my Medipen – I feel a review coming on – and adding to my “surgical appliances”. Firstly I bought some physio kinesiology tape after reading Ali’s article last week – I thought that hubby might be able to learn how to tape my arm back in place, but the family consensus seems to be to mummify me in it! Hmmmm……..Then I sent hubby out to Lidl to buy some chicken and he came home with ankle supports. Those of you who are Lidl or Aldi fans will know that the middle rows in the store are always very exciting and you never know what you might find nestling alongside the crisps and fruit juice! This week it was various medical appliances from heat pads to raised loo seats seated next to petrol powered jet washers and lawn mowers. I came home with a garden table on one occasion….
So whilst sitting here watching youtube videos about applying sticky tape to my body (we will get our physio to teach us) and adding more velcro straps to my wardrobe, I have been perusing the blogosphere to find some more fab posts for you to read. Who has heard of #BlogBattle:Moon? Have a look at Gary’s post for this writing challenge. I’m excited to introduce you to Anna, a local artist who also happens to be a part of the We All Send Cards community (where my girl’s art can also be found on greetings cards). She has been featured on the Women Talking website and discusses her career as an artist alongside her diagnoses of dyslexia, dyspraxia and ADHD. Lily provides pointers for US residents navigating the benefits system at How To Get On blog. The lovely girl is very pleased that I have included a post about “period poverty” – something that hasn’t been spoken about in the past.
So grab a glass of something nice, turn off the phone and sit back to indulge in some great reads…
I have been saying for months now that I would get my act together and join in with Sheryl’s Link Up Party over on A Chronic Voice…..so this is finally me getting my act together, just in time to sneak into June! Sheryl provides prompts so that we bloggers can learn just a little bit about each other – and ourselves!
Prompts for the Month
Over the last couple of weeks my kids lives have been galloping at a great speed, reminding me that I really am that middle aged woman who stares out from the mirror! The household exams came to a finish this week as our girl took her final GCSE – as a parent I have been through them 3 times and that is it, no more! Then my baby went off with her bag containing a party dress, shoes and makeup to get ready with friends for their end of year party – I doubt that she will let me post a picture, so you will have to take my word for it that the girls looked beautiful. Reminding me how long ago I was 16!
Son number 2 came home from his first year at university sporting a slightly shaggy, slightly ginger beard and looking skinnier and taller. Last night the hall was suddenly full of very large shoes as a group of 19 year old males gathered for drinks and football before heading off to a party. “Don’t wait up!” reminding me yet again that my youthful days of partying are long behind me.
The final straw came in the form of a large white envelope addressed to son number 1 bearing the stamp of Companies House. “This is really happening” said my girl at the realisation that her annoying big brother has finished university and is entering the big wide world with a tech Start-Up! Reminding me that I really do have adult kids!
If yours truly had remembered all that I read on a regular basis and tell myself about pacing, perhaps today (Saturday) wouldn’t have been a “crash & burn” day. It has been a major crash at that, meaning PJs and sofa all day. But it is not every week that hubby goes away on a school trip to France and my birthday falls slap bang in the middle of said week. Now of course hubby going away means that my new carers for the week are the kids, so pacing in the house goes out of the window immediately. But add into the equation several lovely groups of friends wanting to take me out to celebrate and the kids actually arranging a meal out too, then there is the recipe for an epic failure at pacing. It has been great though!
Recently I have recognised that “surrendering” to my diagnoses and accepting my limitations need not be a negative. Too often we think of ill health in terms of “cure”, and with ever changing medical advances there can be an unrealistic expectation of the medical profession to be able to put everything right. But the reality of many chronic conditions is that there is not a cure and the best that can be done is to manage symptoms and keep as healthy as possible. I know that some people didn’t understand why I started to use a wheelchair when I can still walk, and they will view my surrendering as something very different.
But for me surrendering to my conditions and accepting them has been liberating. No, I’m not “giving in” and am definitely not negative, but rather acknowledging that to live my life in the best way possible way sometimes I need a bit of extra help. If using a wheelchair means that I can still go round the shops, or on a family walk then so be it! If I need to rest and binge watch on Netflix, I won’t feel guilty (that is a work in progress!).
Much to the disgust of my kids, I think that my computer and social media skills are really improving. If you listened to them you would be forgiven for thinking that I am the mother who constantly posts pictures of my little darlings every move. Get over your selves, kids – I have other things in life to tweet, post to Facebook and Instagram!! I have finally swapped to a .com blog account with wordpress, I am now able to link up all the relevant SM sites on my book reviews, I have set up several Facebook pages and I am an admin to a group. Of course when I asked the then student engineer to set me up a blog when I had my spinal cord stimulator, it was just laughable in the kids’ minds that anyone would want to read anything their dopey mum had to say. But my followers have grown slowly and steadily from all walks of life, and this old girl is pleased to report ongoing, improving IT skills!
I’m going in a completely different direction with this prompt and want to share some fun that we had a few weeks ago. For the past couple of years I have made the birthday cakes for the daughters of a friend, varying from My Little Pony to Cat Woman to a magic unicorn tiered cake. This year the brief was sent by the soon to be 8 year old in the form a photograph with attaching note – NO fondant or buttercream icing! “OK, leave it with me” I said to mum, wondering on earth I would achieve anything vaguely resembling the finish on the picture. Then I learnt about “Mirror glaze” cakes!!!
So, with cake made and Youtube videos watched and admired, the lovely girl, hubby and I set to work creating. The covering is made using a combination of gelatine, white chocolate, condensed milk and a few other goodies. Then the colourings are added before pouring the icing over the cake until it is flowing down the sides and completely covers the cake. Depending upon when the colouring is added and how many are added to one layer will alter the final cake covering. It was great fun, the kitchen saw more flowing condensed milk than it has ever seen but for a first time I was pretty happy with our Mirror glaze galaxy cake!
Here we are in the UK celebrating another bank holiday Monday, and in the south east the weather is glorious..AGAIN! I can’t recall a time when both May bank holidays have been sunny – 2018 will be one to remember.
This week in the PainPals house exams have taken centre stage with the student engineer taking his final “Finals” exam – hooray – and the lovely girl sitting the bulk of her GCSEs. There is just a group presentation to be given on Wednesday and then he has finished…4 years really have flown by! Fingers crossed now that he gets the results he wants (and deserves). The lovely girl is still revising, but feeling a lot less stressed and is creating a pile of books and notes ready for her bonfire at the end of exams! Prime place is given to Mansfield Park which she hates with a vengeance. Have I ever mentioned that Jane Austen is one of my favourites? She keeps speaking to us in German though…this will continue as she plans to take German A level, but we haven’t got a clue what she is saying. I am enjoying our latest German TV show though that we found on Amazon “You are Wanted” – she listens to the German whilst I read the subtitles.
Mum and the student engineer’s boyfriend (must find him a name, that is too long!!) celebrated their birthdays this week, on the same day, so we all enjoyed a night out at the local tapas restaurant. I would love to share a picture with you, but the couple that I managed to take are truly awful and as my mother reads this, I really cannot publish them as she would never speak to me again! The student engineer has planned a night out tonight (most unlike him) – and I can’t say any more in case his other half reads this before they get there. Stop typing, Claire..it is a surprise!!!!
So what have I found for you in the blogging world this week? It cannot have escaped anyone’s notice that four letters have been huge this week – GDPR – and I have included one post that is really useful. But there is also a little something to tickle your tastebuds for wine day, a lovely piece from Happiness and Food titled “Asphalt and a Leaf” and flamenco..yes, flamenco dancing complete with a video! I love the last post that talks about the giving and receiving of traditional letters and cards, delivered by the postman. I take part in a designer’s card swap within the We All Send Cards site (where my girl has designs for sale) – it is so lovely to open a card with a message just for me!
So sit down, maybe with a glass of something cold and refreshing on this lovely day, and enjoy some great blogger’s posts.
Happy Monday, Pain Pals, and a belated Happy Mother’s Day to all in the USA. I have just had a really busy weekend – that I plan to write about this week -and am struggling to sit upright today, so I’m not writing my normal preamble about life in the PainPals household. I’m not sure how much sense you would get out of me….
So I will launch straight into the blogs that I have found for you….there is a wonderful life lessons post from 100 year olds, a letter to the person feeling suicidal, a letter from a mother to the child she carried but never met for Mother’s day and a practical post about moving your blog to wordpress.com. I really need to sort this out myself!! Finally I could not let the opportunity go by to slip another a zebra post for May – this book review is fantastic and I could not do better myself for the book that has become our family bible (no offence intended to anyone).
So sit back (I have a cuppa and slice of my Dad’s gluten free coffee birthday cake – made by mum!), relax and enjoy some fantastic bloggers’ writing.
A bit late in the day, but I hope those of you in the UK are having a fantastic bank holiday weekend and enjoying this wonderful weather. I managed my scheduling for Chronic Illness Bloggers this morning, and then the heat got the better of my POTS – that is postural orthostatic tachycardia syndrome – and bahm, over I went. The shoulder was already dislocated so that wasn’t a problem, but the student engineer didn’t manage to engineer the wheelchair sufficiently under me and I slid straight onto the floor. My lovely old dog, who always knows when I’m not quite right but hasn’t got the true makings of a helper dog due to his own autistic traits, did his bit to bring me round – dog breath probably rivals the smelling salts of Victorian ladies any day!
But all is well and this zebra managed a trip to our local park in the sunshine this afternoon….even walking some of the way! Dogs walkers were out in force, alongside families and lots of smiles. One of the nicest groups we saw was an antenatal/NCT type – easy to spot from the cluster of very self conscious new dads standing up and holding tiny new babies and the mums sitting on the grass with enormous bags under their eyes, but equally enormous smiles. There were several young men looking like they were handling rugby balls, with a look of mild panic mingling with joy – the “help, what am I supposed to do with this little pink squirming human?”. Funny how a home has to be vetted to have a new puppy, yet a new baby doesn’t come with a manual….and neither does a teen or a twenty something!
Exams are under way – the student engineer is nearly no longer requiring the “student” moniker and is about to sit his second “final” exam. GCSEs are starting in earnest for the lovely girl, having had the obligatory “muck up day” last week involving hundreds of rubber duck, balloons and the odd water melon. Don’t ask!
This week there are some old friends back on my blog list, plus some bloggers who are completely new to me – like Erin at QuintessentiallyMe and Carrie Anne Lightley. There are some delicious looking brownies, some mindset tips and some flash fiction. So sit back, with a glass of something tasty and enjoy!
The last day of April and the showers are having a laugh as they are more like downpours. Hubby has gone into the abyss this morning – or rather the Year 5 activity week in Kent where he has mud, zip wires, mud, archery, more mud, climbing, yet more mud and fun! All with approximately 60 nine and ten year olds…eeekkkk! There will even be a disco one night, so I hope he remembered to pack his sparkles.
The main event of the week in our house has been the student engineer turning 22, although at times I wonder if it was 5. His mood swings are off the scale at the moment and the lovely girl and I are counting down the days until his final exams are over – he is always a complete nightmare to live with during exam season! But I don’t know where the time has gone but my little boy has grown into a young man about to enter the work force (hopefully with a top notch degree in Electronic Engineering) and a world where he speaks a different language to his parents (tech!!).
The lovely girl took her final art exam and passed with full marks. Her work will have to be moderated, but unless the moderator looks at it with completely different ideas to her art teachers, she will have an A*. She is so modest that she will hate me for even writing about it – I wish I could say she inherits her talent from her mother, but I’d be lying. No, not from her father either before you ask!
Yours truly has been fitting in a couple of book reviews and a trip to see the wonderful film Journey’s End around an ongoing migraine – you know the type that you think has gone and than a flicker of sunlight and bam, there it is again. Several days on now and it has gone, but my head is still stuffed full of cottonwool and my tongue has been secretly pumped with fillers! The film, adapted from the play by R.C.Sheriff an old boy of my school, is something that I would like to review as a separate piece for you, so watch this space!
Finally, May is Ehlers Danlos Syndrome Awareness month so I give you fair warning now that there will be a constant supply of zebra stripes on this blog. Meanwhile I hope that you will find my selection of posts this week both enjoyable and useful. There are pieces about tick bites and Lyme disease, how to relax doing art, and getting a dog. For ladies of a certain age Tasheenga brings us “That Bitch Big M” – seriously funny!! There are also a couple of very inspirational posts from within the wonderful spoonie community!
So grab a coffee, turn off your phone and sit back to enjoy some great blog posts.
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob