Yes, I’ve finally gone and one it and purchased some new wheels. I think that any decent midlife crisis has new wheels as a prerequisite doesn’t it? My new wheels are sleek black, with a red chassis, great suspension, smooth handling, top speed of…….getting a bit carried away here, I think. No sports car for me or even a moped….but I have bitten the bullet and am the proud owner of a nearly new wheelchair. I cannot believe that I am in my 40s and so excited by my new toy!!
My walking has really deteriorated over recent months, as on top of the nerve pain, my hips and knees have popped in and out like the hokey cokey. The problem with this is that my poor old ligaments are now so stretched that the muscles go into spasm to hold everything together – and the ligaments & muscles both hurt….like crazy! On Sunday a short walk resulted in a well timed faint and resulting hip displacement which saw me being lugged like a sack of spuds from front door to the lounge. Son number one announced that “Mum, you are too heavy” – charming! Nothing like a weight comment to make a girl feel good about herself. Anyway this led to some serious ebay surfing and watching – not shoes this time sadly – and Duncan collected my wheels from a very kind couple last night. The chair was only purchased 8 weeks ago for an elderly father, who has since passed away, but apparently they were very happy to hear how they have helped us out as finances are tight.
I attended my first governing body meeting of the school year last night, and by the end I could scarcely stand let alone walk to my friend’s car. I don’t expect people who hardly know me to understand or even to appreciate how slow I am – most of them left together and of course were quicker than me – but how do you explain when one of them, who helped me to the car, commented that I seemed in a lot of pain? How do you explain that by the end of that 2 hours it was not only my back and leg hurting me, but my shoulders were screaming at me to such an extent that I couldn’t lean on my arms let alone pick my bag up? So instead a smile and innocuous comment along the lines of “there is always pain, but life goes on” and then I said that I was about to become the owner of a wheelchair….it really will make a difference on that walk between the front of the school and the year 6 building!
When I arrived home my chariot was awaiting me in the hall – apparently my lovely girl had already taken it for a spin up around the house. Olly acted completely nonplussed by it – of course he had been embarrassed by pushing me in the hired one as a typical 17 year old lad – but then I caught him sitting in it in the dark last night trying to take the brakes off, ha, ha, ha!
So off for a spin in the park if my joint pain allows and the rain holds off……
I found our anthem. It speaks to so many of the conditions of this syndrome including body temperature regulation issues, inability to commit to showing up somewhere due to symptoms and flares, being upright one second then passed out another, fighting with your body one moment and loving it another, and the frustrations of having to stay home while knowing that going out will only cause more problems.
That’s right, I found a song that encompasses all of these symptoms. Would you be surprised to hear that Katie Perry sings our song?
Check out the chorus of Hot N Cold:
‘Cause you’re hot then you’re cold You’re yes then you’re no You’re in then you’re out You’re up then you’re down You’re wrong when it’s right It’s black and it’s white We fight, we break up We kiss, we make up (You) You don’t really want to stay, no (You) But you don’t really…
I’ve really struggled to get my act together over the last 10 days and write. You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions! So this also means I’ve been blogging for a year.
My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote. At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth, when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus. I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me. I am really grateful.
I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery. This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it. It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.
But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest! Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure. I have permanent nerve damage & a permanent genetic condition. Would I go down this route again? Absolutely. Whilst the scs is not the be all and end all for me, it has given me relief and some control back. I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours. A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again! I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis. But….I still envy my friends who are able to have them on all day!
I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago. It was not easy! In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again. A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling. I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it. But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results. My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.
No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.
Positives from this last year have been joining social online communities. I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations. The realisation of how many of us there are and how many families who support & are supported is simply staggering. To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.
I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age. I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!! There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks. They should be so lucky to have the choice – and only one scar – they should see my patchwork. We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.
On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog. The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub! The second is The Book Club on facebook which has been amazing. I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here. Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people. Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.
At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?). But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship. A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!
I’m really honoured to have been featured this week on Mariah’s blog From This Point Forward on her Facing Forward series. Mariah says “Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!”
I want to share a link to a blog post from a very talented young man who has just announced his departure from progressive rock band The Enid. Please don’t switch off because Prog Rock isn’t your thing – it isn’t really mine either, but my husband has followed The Enid for years and so also the career of Joe Payne since he became their lead singer 5 years ago. His talent is undeniable – his vocals would work on any musical theatre stage let alone a rock band.
My reason for sharing is that Joe has written a very candid post describing how life overtook him and before he really knew it, he had been taken over by anxiety and depression and breakdown. I have described before how my husband suffered a similar mental health breakdown a couple of years ago, after a period of extreme pressure from both work and several life experiences. There is still a stigma attached to any health issues that are related to the psyche rather than the physical – but this should remind us that if a young, talented and successful young man can succumb to depression, it really can effect anyone. Let’s all continue to raise awareness of the importance of mental health care – thank you Joe for sharing and very best wishes for your future.
I was fortunate enough to receive a copy of Noodle Trails from The Book Club on facebook in exchange for a fair and honest review – all opinions are my own and not sponsored.
Eileen sets off for her regular annual travels with Thailand firmly in her sights, only this year the circumstances feel different. In the past she has visited foreign parts under her business guise of Eileen’s Imports indulging in her passion to work with small producers of Fair Trade goods. These trips took her to Nepal, India, Cambodia, Vietnam, Africa and always her favourite, Thailand. However this trip came as a long term relationship was ended suddenly and out of the blue by her partner, and also as Eileen was having to accept that her once thriving business was no longer profitable. The change in the economy meant that the goods that she imported from small groups of, often, women working on the poverty line, were no longer in demand from the struggling shops & traders of the UK. But the trip has already been booked, and maybe it will provide a time of both grieving and healing for these two great losses in her life, before she can move on to a new life in Scotland.
As a blogger, I was keen to read this journal and experience blog posts brought together in a book. The disclaimer at the beginning does state that whilst the book is based upon real events, many have been dramatized and some is fiction. I have never been to Thailand, or in fact any of the countries that Eileen describes, but she transported me there with wonderful descriptions of the scenery, the people and the infrastructure. But my favourite descriptions were of the food! Every place that she stayed in was rated by the local food – not the food served up to the tourists, but that served in a local lady’s front room or café where the residents would eat. The aromas and tastes conjured up by Eileen’s writing made me salivate for noodles and ginger and chilli!
I learnt so much about Fair Trade – and Eileen’s guilt at letting down her contacts in villages in the middle of nowhere when she was unable to place an order this year. Small orders from western businesses could keep a whole village in work and food for months at a time. But I also laughed out loud at the descriptions of the family from whom she rented her final bungalow – the mixture of Italians and Thais was lovely, and I really hope that these lovely people were real and not fictional! I enjoyed this so much that I have found Eileen’s blog and her facebook page (www.facebook.com/Noodle-Trails-Eileen-Kay) and continue to follow her as she writes another book, learns Thai and I believe continues to wander Thailand.
Book review of the new novel by Conrad Jones (also posted on Book page)
I was fortunate enough to be given a copy of Brick through The Book Club on facebook in exchange for an honest and unbiased review. All opinions are my own.
The murky underworld of gangland Liverpool is the setting for this gritty, fast paced thriller. With a prologue that leaves us with no illusions about the darker, violent sides of the story that are to come, the different threads and characters are introduced quickly. From the thugs of the prologue & burnt corpses of the first chapter, to a 14 year old boy and his family, to the new Detective Inspector with the police department, each character has their individual tale to bring, but these all feed one larger tangled web.
14 year old Bryn is the teenager who, out walking his dog one day, happens to say the wrong thing to the wrong person and finds himself the victim of an unprovoked attack. But this leads to a death, and the investigating police squad soon find that the teenager and his family are now unwittingly on the radar of a dangerous gangland criminal wanting vengeance. Stolen drugs, misplaced loyalties and the lengths that these gangs will go to, in order to protect their turf and their stock, make this a dangerous world for an ordinary family to find themselves in. Even DI Braddick who is investigating both the case of young Bryn and the case of the charred corpses, has some personal reason from his time in London to want to catch the Russians at the top of the chain. His investigations converge with an ongoing drugs squad investigation, and there also appears to be a mole within the police team. How else is the gang boss managing to find out the confidential whereabouts of witnesses & stay one step ahead? Even Bryn’s brother and the expensive lawyer that he hires appear to have something to hide.
This is not a novel for the faint hearted or squeamish as Conrad Jones paints a very vivid picture of the violence inflicted and the cheapness of life in the drugs underworld. This extends to the psychopathic tendencies of certain characters who are depicted as lacking in any empathy or morals, and unable to distinguish an innocent family for the sake of revenge & warped loyalties. I appreciated the way in which the police officers were depicted – they were not the usual upstanding pillars of the community who were whiter than white, but rather were humans with a range of personalities & emotions that they each brought to the job in hand. There were parts of the book that made me want to shout at the characters or hide behind my own hands as I couldn’t bare what might be coming next – how could Bryn’s family possibly think this action might be a good move, or why were the police not investigating that? For me this is great writing! I was on the edge of my seat wanting to know what would happen next and yet almost didn’t want to know, as things couldn’t possibly work out “happily ever after” – Conrad Jones has not written a fairy tale but rather about real life.
I would love to see a follow up to this as the characters of several of the police officers have developed sufficiently to move into another investigation, and there are loose ends from this plot that could be investigated in a sequel – no spoilers! In my opinion a gritty page turner that I could not put down – this gets 5 stars from me. Please Mr Jones, bring DI Braddick back for more!
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