Here we are at the start of a new week and time to explore some more blog posts. This week has passed in a blur of hospital visits – as you know if you’ve read about my rusty old body int the last couple of posts! – and I must admit complete brain fog and cluster headaches.
The brain fog has caused much hilarity at times when my words have come out as something completely different to how they started in my brain. Officially called expressive dyphasia, and commonly seen with strokes, I don’t think I’ll tell you how it is described in our house….I have experienced it once before when playing football at school aged about 12. I had a head on collision with a friend, nearly knocked her teeth out, and then proceeded to become very concussed over the next couple of hours. By the time I reached hospital, I couldn’t walk, speak or see – as the swelling inside my head started to subside, I remember being asked questions, knowing the answer but the words that came out were not connected to my brain! I am sure that some family members would say that nothing has changed…..
I’m just reading a science fiction book and came across this passage “There’s a small subset of people whose cognitive functions get scrambled in outer space. Something about how the pressure change of the vacuum affects the bonds between molecules in the neurons of their brains.” (All Our Wrong Todays by Elan Mastai) I had a light bulb moment – “YES! This is brain fog – even if it is in space”.
But moving on – checking over my spreadsheet of Monday Magic posts, I am amazed to see that there have been links for an amazing 354 blogs and some of those have featured several times. What a fantastic number of inspiring and motivational bloggers there are out there, and I feel that I find more new blogs every week. So please take some time, sit down with a cuppa and enjoy some great posts with a bit of a self care theme running through them – all spoonie mums, my mate Jen Hardy would be really grateful if you would answer her survey ahead of a podcast.
Welcome to a bit of Monday magic – I hope you all had a great weekend. We saw the middle child, aka the politics student, return to university yesterday and I don’t think it took too much preparation on his part because he hadn’t unpacked most of it since his return! Yes, he has been living from the cases on the floor of his bedroom for the last few weeks, which have become increasingly full of chocolate wrappings from Christmas, crisp packets, new gifts, clean washing, dirty washing…you get the picture, not an inch of carpet to be seen. Anyway hubby deposited him back yesterday with or without all that he needs and the next thing will be to reclaim the room and change the odour from Eau de Teen Boy to fresh air!!
The eldest continues to undergo job interviews from the various applications that he has put in. Since when did the selection process become so complicated? If you get shortlisted from your application, you firstly complete a phone interview, then online psychometric tests (“Mum should I say what I think they want to hear, or what I think might be right, or is there even a right answer?” “How on earth should I know? I’m just your mother!”) then in his case, a phone/skype interview with a live computer coding test…..and then after all this a face to face interview in an office, meeting a real person, drinking coffee and talking! Wow! He does have a final interview this week with a big American firm (so I’m told) – but I have no idea what they do, what he would do…..just hope something comes to fruition …..and if it requires a move out of home and away from my kitchen & bathroom, hurray(and then we will welcome him back for visits with open arms!!).
This week I was sad to see a couple of blogging groups’ admins have to post that group members were not following basic rules and were not supporting the spirit of the groups. I really hope that this is the minority of bloggers and that the majority still look to support others, follow people because of a genuine interest and to interact. Maybe I am being naive, but I hope not. I have some old blog friends and some brand new bloggers to introduce here with a huge variety of post – from healthy eating (although the advice will not work with the student engineer!) to dealing with bullying to the hilarious post from Hot Mess Memoirs about giving back crying babies.
Sit back, grab a cuppa and enjoy some terrific posts!
I’ve been nominated for the Blogger Recognition Award by the lovely Rachael from Rachael’s Thoughts. We first met on the facebook group Big Up Your Blog, a fantastic community set up by Suzie and Em. Rachael blogs about all sorts and recently she has shared about her move back to the North East of the UK with hubby….just one week before Christmas! You can see her original nomination post here. Thank you so much, Rachael.
RULES FOR THIS AWARD :-
Write a blog post to show your award
Thank the blogger that nominated you
Tell your readers how your blog started
Give two pieces of advice to new bloggers
Nominate other bloggers for the award
How my blog started…
In all honestly I knew nothing about blogging and it started on a complete whim, and as a little bit of a joke. I was going into hospital to have a spinal cord stimulator trial in the hope that I would find some relief from the chronic nerve pain in my leg and back – secondary to nerve root damage and a genetic condition Ehlers Danlos Syndrome. Initially I asked my son to set up a blog thinking that friends and family could follow my progress and save hubby from too many phone calls. The kids thought it was hilarious – “why would anyone want to read anything you write, mum?”.
I had found advice and support online from others invaluable in the lead up to this, and if I could offer the same to anyone else then I wanted to give it. The writing process itself has been really therapeutic and I have found a lovely community out there – a chronic illness community who I can both support and gain support from, and some fantastic new friendship groups who are a lifeline for someone like me who spends increasing amounts of time on the sofa with symptom flares/deterioration.
I can’t quite believe that I am still here, tapping away and part of a world that just a couple of years ago I knew nothing about. My kids can’t either – and daily regret introducing me to Facebook, Instagram etc….but that is another story!
Two pieces of advice I want to give to new bloggers:
Enjoy it! – Take it slowly, Rome wasn’t built in a day and all that, find your blogging feet and get into your writing groove whatever that may be. I know that there can be a tendency out there to focus on stats, followers, traffic etc…..but think about why you are doing this. Don’t get so embroiled in the numbers that you forget to enjoy the experience.
Meet & support other bloggers – much the same as Rachael said in her post. Follow other blogs that interest you, leave likes and comments – generally engage. Join groups on Facebook – for me it was the Chronic Illness Bloggers and The Book Club on Facebook initially – and take part in threads and chats. If you are a social media dinosaur like yours truly, learn about Twitter & Instagram & Pinterest….but don’t try to do it all at once as you risk feeling swamped. None of them are going anywhere. But it is out there that you will find your community and then your own blog will grow…..but it isn’t a competition.
A week into the new year, the decorations are down, the Christmas tree is looking forlorn on the back lawn and the kids back to school. Well in our case nearly…..the lovely girl returns tomorrow, the middle child returns to university next weekend and the student engineer returned today, just as the UK train strikes started up.
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Our house has been a mad frenzy of coursework this last week – 2 projects for the final year of Engineering involving analysing the use of Boris bikes in London and Deep Learning (whatever that may be!); the lovely girl has been finishing her sketch books and final piece for her art, although any visitors would have thought she was decorating the lounge!! The title of her works – “I, Me, Mine” and “Blood, Flesh, Bones” – so she has focused on our genetic Ehlers Danlos Syndrome. I have spent some time modelling for her photographs and I wish I could report that they are super glam….but they are not!!! Instead she wanted close ups of my body parts which looked the most veiny – charming.
My Elbow!
Hubby managed the delayed visit to his parents, and whilst he was away I enjoyed reading and sharing a huge variety of blog posts. This is just a small assortment varying from favourite books, to beauty products to a yummy recipe for dairy free ice cream. Two that really stand out, and are poles apart, are Tania’s about her need for a Smartdrive for her wheelchair (I am slightly biased as we share the same condition) and The Bryntin Project’s plea to us all to realise the harm our birthday balloons are doing.
So grab a cuppa and take a break whilst you dive into some fab blog reads. Please comment, like and share!
I hope that you have all had a wonderful holiday season – I appreciate that for many of you this will have been hampered by health problems, for others it may be the first year since a bereavement, or just simply a difficult time – but we have to believe that there is always something positive, even out of negatives (hope my eldest is reading…..we call him Mr Glass half empty!).
I’m not going to do a look back at my year and bore you silly…..this week is probably enough. Our week hasn’t gone exactly to plan – when does it ever? – with yours truly managing to fall off the sofa (I know, I know!) and putting out my shoulders, neck, ankle and hip in one foul swoop!! Of course this would be the night before we were due to travel to visit the in laws…..add hubby having a horrendous case of man flu (actually he has the most awful chesty cough and was banished to an empty child’s bed last night!) and the trip is off. if you are reading, Dave and Wendy – I am so sorry! Kids are too as it meant any plans for New Year’s Eve parties in this house were ruined…..the teen girls due to gather decamped to another location and at the time of writing we have had no communications from the lovely girl! Plus one boy still old cold and snoring in bed here, having made it home.
But two huge positives for me were managing a lovely family meal out on Boxing Day, and hosting the extended family the day after. My brother’s family, the student engineer’s partner, and of course my lovely parents…..plus the drone that one very silly auntie bought her nephew for Christmas. Well I didn’t think he would be flying it around my living room!!!
I have put together a huge list of New Year blog posts for you from some of my blogging family…..many from the Big Up Your Blog community, others from Chronic Illness Bloggers. There are reflections, good wishes, goals & resolutions, poetry and don’t miss Phil’s hilarious Predictions from a legit Psychic! Plus the first is a great blogging invitation on Smorgasbord. Sit back with a glass of something good (dry Jan can start tomorrow!) and enjoy.
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!
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…..
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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….
Sketchbook street scene by Lucy
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!
Well here we are, friends, in December and I cannot believe just how the year has flown by. There are plenty of fantastic Blogmas posts that have begun to appear in the blogosphere, but I am resisting the urge to share just Christmas posts….yet!
We had our first Christmas night out last week with our local book club. My hubby Duncan and I meet with like minded friends once a month in the local pub and have a very informal, often funny, chat about the book that we have all read the previous month…..or not in the case of Duncan! Actually that’s probably not fair – sometimes other people haven’t read the book either!! No, seriously, he has read a couple in the past. Anyway this month – with a meal out being on the menu – we found ourselves accompanied by the eldest and yougest kids…..the middle one probably would have come too if he had not been at uni. I was worried that book club might think they were being overtaken by the Bendy family, but they were happy for the engineer and lovely girl to join us – particularly when the student engineer found a voucher for 30% off. He even chose the book for December – which I have purchased on audible in the hope that hubby might get to the end of it if he can listen whilst walking the dogs.
Well, maybe this old man won’t be walking! 15 years young, Sam is quite happy on his bed thanks!
Dunc and Prince
I was incredulous when in the space of 10 days I received two hospital appointment cancellation letters – one rheumatology and one cardiology. But then I had a CT scan appointment for my shoulder out of the blue scheduled the week before Christmas, NHS at 7.20pm. I had no idea appointments were ever scheduled this late!! Today I had a phone call for an orthopaedic appointment – so where I have lost two, I have gained another two…..don’t worry that they are different speciality.
Currently the student engineer is pacing the room ahead of a telephone interview/coding test this afternoon – and another with facebook later this week. The prospect of interviews and work in the real world are suddenly very real – so how does mum calm down a very nervous adult son, who seems to be talking in a foreign language when describing what is expected of him. I feel old!
Without further witterings, I introduce blog posts for this week. The first post from the lovely Angela is not a conventional wish list and it would be lovely if you would join in – please let Angela or me know what you are taking from her list! Sheryl’s December prompts on A Chronic Voice are listed below – again I look forward to reading your responses. For those in the UK don’t miss the post for reserving your ticket for the Bloggers Bash in London in the New Year – hope to see you there.
So for now sit down with your cuppa – or maybe you have started on the mulled wine – and enjoy some great blog posts!
Black Friday has gone…although I suspect it will roll into the pre Christmas sales, my friends in the US have celebrated Thanksgiving and in our household we have celebrated my nephew’s 7th birhtday…and on St Andrew’s Day will celebrate my brothers’s birthday (no age, he might be reading!). This must mean we are really starting the count down to Christmas!
I have been party to several inspirational moments this week – no, not making the Ghostbusters birthday cake although I think it was pretty good considering the ongoing struggle to keep my shoulder in socket! The first was a visit to see the film Unrest, made by Jennifer Brea about living with ME/CFS at a local theatre with my mum. I’m not going to say much about the film here as I will write a review – but Jen introduced us to some really inspiring people across the globe, and then mum and I met some lovely people in the foyer after. Naturally they assumed that I have ME, and I explained what I do have (EDS, POTS) and how there are many overlaps. I was delighted to meet one gentleman who was there alone, but has a daughter with a new tentative diagnosis for hypermobility syndrome and possibly POTS. He took my details, the blog, and information for EDS UK and I really hope that his daughter will get in touch.
As Chair of the KGS Friends, I am often invited to events at my old school and this week Duncan and I attended the senior school production. We had no idea what to expect and I was slightly nervous when I realised that my wheelchair spot was virtually on the stage – if I had released the brakes I would have taken out a bale of hay and been centre stage. But we need not have worried about having to applaud politely…..this production of “Nell Gwyn” was fantastic! We were so impressed by the acting, the singing, costumes – everything! It equalled a night out to any professional theatre – honestly. As in every production there were several stand out performances – one from a young man playing the actor who always played the female role (remember this is Charles II time) and he was hilarious. Comic timing that many pros would envy just oozed from him. Then there was the young lady playing the lead role, Nell Gwyn. Isobel Thom was superb!
Isobel Thom (as tweeted by Izzy)
She never missed a beat with her speech, her singing or the comedy – I do hope that she continues to act when she leaves for higher education next year. A truly inspiring group of teenagers – we had a wonderful night.
Finally the student engineer asked me yesterday about my nursing at the Middlesex Hospital, London as he had come across some articles about the first HIV unit and a photographer who took intimate pictures in the early 90s. The photographer is Gideon Mendel and he has published a book called The Ward…..the wards in question being Broderip and Charles Bell.
Photograph from collection by Gideon Mendel entitled The Ward
As student nurses working and living at The Middlesex, I believe that we were priviledged to witness some very special times. They were not easy times and this was probably the first encounter that many of us would have with people our own age dying. HIV and AIDS was a death sentence then and the majority of the patients were young gay men. They were misunderstood and villified by certain elements of the press – they were blamed for this disease and feared by the general public. I remember that there was a huge stigma attached to the unit even amongst other hospital staff in the early days, and haemophiliac HIV positive men did not want to be on the same ward. Many of the young men had been disowned by family (for being gay) and their support network was from the gay community and the nurses. But I learnt so much about human nature, tolerance and love. I still remember the first time I saw a Kaposi sarcoma lesion and a young man needing assisted breathing for pneumocystitis pneumonia – both AIDS defining illnesses then. I believe that for many of us young nurses, we saw no distinction between these young men dying and others dying on the oncology wards. We “grew up” in our nursing training knowing this terrible disease and the few retroviral drugs available at the time, but this was unusual. Many of us went on to undertake a specialist course for Care of HIV and Aids once we had qualified (ENB 934 i believe!). One of my friends also pointed out that it was very unusual for a partner to be allowed on the bed with a patient in those days – no matter sexuality. The care was enlightened and a patient transfer to the AIDS hospice, The London Lighthouse, really stayed with me into my days as a hospice nurse. It took years for other areas to catch up – I can still remember the first AIDS patient to be admitted to our hospice in approx 1997 and the ignorance (not intentional) amongst experienced staff. The young men we cared for and those pictured in The Ward all died, but just several years later advances in pharmaceuticals meant that HIV was no longer a death sentence. As a former nurse and the mother of a young gay man, I am so thankful that times and attitudes have changed and must continue to.
Wow…bit longer than I intended so I will launch straight in and hope that you will indulge my first choice which is a post about Broderip ward. There is some cookery and stress relief for the holiday season and something called “The Single Woman syndrome” – intriguing. So grab a cuppa and enjoy some new blogs!
Please comment, like posts and share far and wide in the spirit of the season! Have a great week,
PainPalsBlog 