Life has got in the way of blogging over this holiday period. Between the Christmas preparations and festivities, and the odd body failure here and there, time has flown by……but I am sorry that I haven’t felt up to using the computer screen even to wish my blogging friends a Merry Christmas and missing a Monday Magic!
Now we are in the no man’s land period between Christmas and New Year, when no one can quite remember what day of the week we are at. I have had so many posts in my head ready to write and not one has made it to the page – I blame brain fog, POTS and a dislocated shoulder and ankle….plus a house full of young adults, big shoes, the dog and mess! More of their antics on Monday Magic tomorrow.
Here I want to extend very happy holiday wishes to you all….and a few pics!!
It is such a busy time of the year when everyone is supposed to be jolly, enjoying the madness of Christmas shopping, wrapping gifts and dressing for parties. You probably don’t know, but food and drink play a huge role in the festivities – meals out with loved ones, chocolates and nuts, mince pies and egg nog, Christmas cake and plum pudding. The television is overflowing with chefs telling us how to prepare for a magnificent feast timed to perfection.
Shop fronts and homes are transformed into a winter wonderland as decorations and lights sparkle. The smell of a real Christmas tree invades the crevices of many a house, this one included. The sights, sounds, tastes and smells of this time of year can be truly wonderful – glitter and glamour, carols and Michael Buble, cinnamon and nutmeg, mincemeat and mulled wine.
I want to enjoy it. I want to take part and accept invitations to party. I want to bake and give gifts to friends and family. I want to feel joyful.
You are my closest companion – with me 24/7, you know me better than anyone. But the Christmas message doesn’t seemed to have reached you.
You hinder me and slow me down, meaning that I can no longer join in how I want to. The invitations turned down at the last minute, the exhaustion after one trip to the shops, the increased difficulties dressing the tree and “decking the halls”. The guilt at putting more on loved ones, being unable to host parties or bake up a storm. The food once so tempting, now leaving only discomfort and tears.
You watch the weather and as the cold and damp creep in with the winter, you ramp up the chronic pain leaving my body struggling to leave bed, let alone leaving the house. My hands fumble over Christmas wrapping, my back fails to keep me upright, dislocated joints reach a new level on the pain charts.
The expectation that Christmas should be “the most wonderful time of the year” is not the perfect mixer for brain fog and reactive depression. Some days it is a toxic cocktail.
But as you are my constant companion, I must teach you about the festive season and in turn you must teach me how to live it with you cradling me. I will try so hard to feel acceptance of you rather than resenting limitations that may be placed upon me. When I feel you knocking at the door, I will learn to slow down, to say “no”, to pace myself. My limitations will become my strength as I enjoy a slower, quieter but no less precious time with loved ones.
I know that you won’t be taking a holiday for the festive season. I know that neither you nor I can guarantee how present you will be at the festivities from hour to hour, day to day. But I do know that we must rub along side by side and cope in the best way that we can. If an outing to a party is skipped or a visit to relatives proves too much, then so be it. If it is impossible to throw off a low mood for festive cheer then so be it.
We will wake together each morning and go to bed together each night. Just like every other day, we will take the holidays as they come……but perhaps now that you know Christmas is coming, you could loosen your cradling arms just a little and give me some slack?
Good morning, Pain Pals and welcome to this very special Magic Monday. No inspiring blog posts for you today – you will hopefully have other things to keep you busy today – just a couple of thoughts from yours truly! Some things that have inspired me, moved me, made me laugh, made me cry – or just been grateful for this year!
Chronic Illness Bloggers – for all of the above and for the admin team welcoming me!
Hope – without it where would we all be??
Reunions – never would have thought this would be my cup of tea, but as I told you all in my blessings post, it was great meeting with old school mates and renewing friendships. Mum and Dad went to one a couple of weeks ago for their old drama group – from 50 odd years ago – and met people they hadn’t seen for nearly as long. UK readers might have heard of the Rev Roger Royale, who was an original member as the church curate – with a party piece that involved getting on the table and belting out “Hey Big Spender” with last orders in the pub. Next year another reunion looms with the girls from my nurse training set…30 years!
Inspiring blogs – I feel I have met so many wonderful bloggers writing inspiring words…..about so many different subjects.
Spirituality – this has nothing to with religion, but about making us all individuals…….I saw this when working in the hospice more than anywhere else. And no, if my kids are reading, I do not mean Spirits!! Although the odd gin goes down pretty well, particularly today! Hic, hic…..Spinal cord stimulator also comes here….it was having mine fitted that prompted the beginnings of PainPals and has given me some much needed relief for chronic nerve pain.
The Book Club on Facebook….for some great laughs, some books that made me laugh and cry, and meeting up with you all at our Birthday Party in London.
Motability – and my lovely new car. Music, although the big kid in the house, Duncan, plays it far too loud – comes to something when the teenagers are shouting at Dad to turn the music down!! My Mum. Manchester – the outpouring of love following the bombing there this year, for me representative of the good side to human nature.
Amazon….oh no, did I really just type that?! It has had pluses and minuses……huge shopping help when I can’t get out, need something fast using Prime, want a change from Netflix or need to stock up the Kindle – minuses: strange things start appearing on the bill that are being delivered to a uni halls of residence, huge shopping time waster when I can’t get out, overstocking up on the Kindle. You get the picture. Art – particularly my daughter’s! Very proud mum, but she will be furious if I write more.
Sense 8 – I became completely addicted this year whilst house bound, only to discover that the final seaon had been cancelled. Still absolutely gutted, but hope that the planned grand finale will still be made….pleaseeeeee. Stanger Things…..I spend too much time on the sofa!
Without further ado I wish you all a very Merry Christmas – thinking of all my chronic friends out there, hoping you have a calm, paced, pain free day!
My lovely friend Cathryn wrote this little ditty that we hope will amuse you all!
Ode to Excess (December 2017):
How many years have we said at this time
We’re not going crazy, just a few gifts are fine.
The kids have so much, they don’t need a thing
We’re lost for inspiration, the money does sting.
Determined to stick to the rules that we’ve set
We proudly congratulate ourselves not to get
Handfulls of gifts from Poundland to fill
Stockings and boxes, a bitter sweet pill.
Yet here we are a week yet to go
We’re edging close and even had snow.
The doubt starts to niggle, we wrestle our minds
“maybe just one more” gift we can find.
One turns to two to three and to four
Then Amazon calling and banging our door.
Panic sets in, have we equalled the spending
Presents still coming, bank balance bending.
Wrapping in secret, while the kids are asleep
Shoving up lofts and cupboards in heaps.
Convincing yourself the spend isn’t too great
Hiding receipts and getting into a state.
Last minute guilt buys for mum and for dad
They’ve leant you money all year but if you don’t you’ll feel bad.
Passing the shops and buying one more
Rushing back home to find somewhere to store.
All under the tree and ready to go
Kids are oblivious how little they know.
As you rock in a corner clutching a gin
Maybe next year you’ll be strong, not give in.
Good evening! I’m a bit late posting today as the dreaded task had to be done – Christmas shopping! I have to be honest and say that this is the first year that I was dreading the trip that has become something of a tradition for Duncan and me over the last decade. We get up and head off in time to have our breakfast in a cafe just off the market place, and then enjoy some empty shops before the crowds arrive.
But with each year early mornings become trickier and some days I can rival the youngsters for not being able to get out of bed. Then there is the cold…and it was cold this morning! Typically as the temperatures plummeted this week, so our central heating behaved in the same way as my body….it grumbled, then shrieked in protest, and finally refused to cooperate! So between dodgy pipework in the home and dodgy systems in my body, I have been snookered. But I am pleased to announce that we did it…..even managed to find a very central blue badge parking spot and found that the cafe could cater for my increasing dietary restrictions. The bulk of the shopping has been completed between today’s haul and my online exploits, and Duncan used the wheelchair as an effective battering ram as the crowds increased toward lunch time.
So now I am flaked out, dosed up to the eyeballs for my dodgy shoulder that constantly forgets the ball is supposed to live inside the socket, and have put together my favourite Christmas inspired posts of the week. I have even managed to persuade the lovely girl to photograph our Christmas tree for you….
There is a blast from the past with eighties gifts (my generation – I had a Petite typewriter), a short story with a twist in the tale, suggestions for those of us with chronic health, crafts for the kids, food….food….and some more food! If you don’t have time to check out all of the posts – please let me direct you to the final post (film) which will bring a smile to your face…hopefully without a Bah Humbug in sight!
Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me. She has invited bloggers to join her in a very special, positive experience – The Blessed Project.
Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.” What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??
So where shall I start?
My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there. He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!
The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out. The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???). We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister. Finally my baby – my lovely girl. She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.
The new student (middle child!) and pals at uni
Like brother, like sister
My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!
My wheelchair – yes really! It has given me a new lease of life as my mobility has decreased and pain has increased. I have spent the last few years struggling to maintain some independence and to walk. But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels. Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!
Night out in London
Maybe not quite what I had in mind……student engineer and Chester
Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be. I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”! Meeting with online Book Club friends at our annual birthday party was a treat.
Mum and friends playing at 18 year olds!
I feel blessed to have found some kindred spirits this year at our EDS UK support group.
My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!
Dunc and Prince
Middle child and Chester
30 years on – meeting up with old school friends and feeling the years just slip away. Hopefully staying in touch….have already met up with one and his family.
Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church. Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit. There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!
We are now well and truly into the countdown for Christmas, PainPals, so it seems only right that Monday Magic for the next couple of weeks will become Christmas blog posts for you! Here in the UK the old song “It’s beginning to look a lot like Christmas” is very true as a blanket of snow has enveloped great areas of the country. The snow here south of London hasn’t settled, but other parts of the country have ground to a halt with schools and Christmas markets closing, ice rinks shutting and grid lock on the roads. Those of you in other parts of the world accustomed to snow must look at us and laugh…..
Pin for later
So it is bitterly cold – pretty awful for the nerve pain – the Christmas tree is bought and just about decorated and the outside lights are up…..but only half are working! Aghhh. This weather is pretty grim for us spoonies and believe me that the cold and damp really do make a huge difference to our ability to do things. Friends, please still ask us to parties and carol concerts, but don’t be too upset if we have to bail at the last minute. I for one will always get to a party if I can!! At the moment though the cold, nerve pain and spinal cord stimulator are doing a manic battle in my back and leg!
On a family note, for those who sent such lovely messages when I wrote about my lovely girl and her friends’ exams – she did really well and is so pleased. So fingers crossed for next summer. Meanwhile the art coursework takes priority….
I have really enjoyed reading some fantastic Christmas posts over the last few weeks and have pinned many. This is a selection of just a few – they vary from traditional recipes(check out the slow cooker hot chocolate – gorgeous), a Christmas book review, gift ideas for the family and for those with chronic health, ways to keep stress at bay and some classic Christmas movies. But to start off I’d like to direct you, with some mulled wine or cider in hand, to a Christmas limerick….enjoy!
We have been so unwell since my last post! Duncan and I haven’t stopped coughing yet, I lost my voice completely last week – much to the delight of the kids – and have forbidden the student from coming home as I’m sleeping in his bed. I have missed out on the various nativity productions at my primary school and have cancelled so many socials with friends I have lost count. Panic started to kick in at the end of last week when the cupboards were bare and the fridge was empty, so we hauled ourselves coughing and wheezing to the supermarket. As friends commented that they were busy getting everything done for Christmas, I was thinking that I hadn’t even thought about it let alone started! Going from post operative recovery straight into flu/cough for nearly 3 weeks has not been a great seasonal prep time.
I have to admit that I have struggled with my back – coughing is rough at the best of times, isn’t it, putting stress on the abs, causing headaches and stress incontinence for us girls. So the added stress on a not quite healed operation site has been tough. My implant site (right butt!) and right leg has been so sore that some mornings I’ve woken up feeling like I’ve been beaten up and even resorted to my post op naproxen again. The stimulation has actually made my nerve pain worse whilst I’ve been ill – I wonder why? After nearly 3 weeks I am so fed up! But on the up side, I have managed to get into the hairdresser’s seat this week and it is official – I am no longer grey. Thanks to my lovely friend Bev, I now look and nearly feel 10 years younger! Duncan and I got out to a carol service for the other school where I sit on the alumni association – I sang the carols beautifully. Really easy to do when, as you open your mouth, no sound comes out! It was here that I was given a piece of advice from an old school friend who has lots of remedies from his Indian grandmother. We do lemon and honey hot drinks (unless like my brother and I, you can’t stand the smell of honey – long story going back to our childhood, our great grandmother and pots of coffee “thickened” with honey!!) whereas he recommended turmeric in hot water…..mmmm, delicious! But I have been that desperate that I would give anything a go and, sweetened with a spot of brown sugar, it has proven oddly soothing. Duncan has been well enough to drive to his parents today, we have shipped the teenage daughter off to stay with my brother and sister in law (thanks, Sandra!), and the boys are still at school/uni……so I am enjoying a glorious couple of days in an empty house. Just me and my dog and rubbish Christmas movies……
For this is the season for goodwill, over indulgence, sentimental tv and bonhomie, isn’t it? How many of us struggle to maintain the cheerful face as everyone around us appears to be having such a fantastic time? Whether it is loneliness, grief, poverty or illness, there are a myriad of reasons out there that actually make this time of year very difficult for some of us. Guilt is another emotion that gets in the way. Guilt that you aren’t feeling jolly; guilt that your condition is keeping your loved ones from the activities that you feel they should be a part of; guilt that others feel that they must tiptoe around you; guilt that you can’t do for your friends and family what you would want to; guilt for feeling jealous of them.
It really is so true that when the chips are down, we find out who our friends are. Over the twenty or so years since I have had my back problems, I have been surprised more than once by both the friends who have stepped up with support and those who have not! This old adage is even more true with a chronic condition. I am well aware that for some people my disability makes me a bloody nuisance these days, but it can still be hurtful. I don’t want to have to constantly ask for a lift for instance, but when “friends” just no longer even think to ask or offer it is tough. I was listening to the fantastic Adele’s song “Million Years Ago” and she seemed to be singing my song when she describes “not being able to stand the reflection I see; my life flashing by; missing my friends, when my life was a party to be thrown; but that was a million years ago”. I can see my friends’ lives moving on, careers unfurling, travels taking them far and wide, and I do feel that mine has come to a stand still. Self pity? I hope not. More being realistic and understanding my limitations. Note to self – New Year, new pain relief with the scs, new stage in my life!
I received a text today from a very supportive friend apologising for being a “rubbish” friend for not being in touch recently. Yet her teenage daughter, who has an Asperger’s diagnosis, had tried to commit suicide. Have you noticed that it is often the people who are in the most difficult situations themselves, who are also the very people who do make the time for their friends in need? I guess this goes back to the “when the chips are down” again – when we have been there maybe we develop a heightened empathy. A friend who has been particularly supportive of me and of Duncan since his mental health breakdown last year, has undergone her own battle with breast cancer, including extensive reconstructive surgery earlier this year. Kylie Minogue took the time to surprise a young woman in her home, with a party live on a BBC show last night to “thank” her for the work that she has done for a breast cancer organisation. What marks her out is that she was undergoing her own treatment for breast cancer, diagnosed in her late twenties, looking at the possibility of infertility, and yet pushed herself to run marathons, fund raise and praise the bravery of other women around her. Of course Kylie had her own personal experience to drive her to want to do something for this young lady.
Christmas! Looking on the bright side, Star Wars is back in our cinemas, the X Factor has finished and Jose Mourinho has been sacked……sorry, Duncan!
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