I just had to share this great post from Sarah Anne at “The Pain Companion” with you. If like me you suffer from nights broken by cups of tea, dodgy 4am tv & chick lit, all mixed with pain, you will appreciate this heartfelt post about the Zombie Apocalypse.
http://www.thepaincompanion.com/blog/zombie-apocalypse-chronic-pain-and-sleep-deprivation
A while ago, I wrote about how we were maintaining the mechanics of still getting it on (much to the disgust of our kids). However, there remained a few things that left the elephant in the room st…
Source: Let’s Talk About Sex Baby….
This is a beautifully written post by MISSTERY. Hope you “appreciate” it as much as I did.
I have a very good friend. She is that one friend that just seems to understand. She seems to get it, even when I don’t. And she sent me a book the other day. But it wasn’t just a plain book, it had little notes and cute annotations in it. And I instantly fell in […]
via Appreciate yourself — Misstery blog
A visit to the dentist got me thinking again about what our medication does to us. I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers! Quite a feat at my grand old age as my kids remind me. Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!
My dentist actually knew what Ehlers Danlos syndrome is and what a spinal cord stimulator is and I have to say, this impressed me. He knew that EDS can cause mucus membranes (the mouth lining), to be drier than normal and that the various drugs we all take for chronic pain can also cause oral problems. Of course he spoke to me about the importance of good mouth care, dental hygiene, flossing etc to keep my gums as healthy as possible, but it got me thinking about some other side effects of the drugs, particularly opiates.
In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine. I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!! The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found. More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome. I have no idea if it is still there, but it holds some great memories.
After the drowsiness, one of the first side effects I noticed when I started my cocktail of drugs was a change in my taste buds. Particularly for red wine! I know, I know, as a responsible now unregistered nurse, I must tell you all that it is never wise to mix strong drugs with alcohol. All the packaging tells you so.
But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine. What on earth was going on?? Did I ever remember to tell my patients that favourite food and drink might become unpalatable? In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs. A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.
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Then we come to the eyes, more mucus membranes beneath the lids. I wear contact lenses and have done since I was 14, but in the last couple of years my eyes have become noticeably more dry and irritated after a shorter wearing time. My optician wasn’t surprised after he asked which drugs I took – at the time oxycodone, lyrica/pregabalin, mirtazepine and fluoxetine. These may seem like such small things, and really they are, but they just add to an already difficult situation.
There is light at the end of the tunnel. Whilst I am still on various drugs and still suffer brain fog, I am finding that my taste is altering again. My mouth remains dry and at times my gums are sore, but I can drink and more importantly ENJOY a glass of red wine again!! Cheers…
It can’t have escaped your notice that it is the anniversary of William Shakespeare’s death, 400 years to be precise. So in a small act of homage to the good bard prepare for a smattering of literature!
“What greater punishment is there
than life when you’ve lost everything
that made it worth living?”
Romeo & Juliet
Some days it feels like this doesn’t it? What is the point in getting out of bed when your once ordinary life is now disappearing? Of course angst ridden teenagers always have the monopoly upon the unfairness of life, just remember Harry Enfield’s “It’s not fair!” Kevin, and particularly on getting out of bed. The student engineer and lovely girl certainly fall into the latter group! If the uni exams next week have questions about sleep and bed, he will be on his way to a first with no problem. This might be the time to share that he is actually “revising” really hard on the beach in Barcelona right now – some student life!!
Chronic conditions aren’t going anywhere. They have a nasty knack of rearing up just in time for that long awaited trip, but rarely taking a holiday when their wearer most needs some respite. Sometimes pain, physical or mental, does feel like a punishment – to me anyway! I don’t believe that there are many of us who are so selfless that we have never had that really bad day when we bemoan “why me?”. But I suppose the greater question is “well why not me?” because in Kevin’s words life is not fair. So on the good days I must focus on the things that do still make life worth living, so that on the bad days I can catch a glimmer that all is not lost.
“Virtue? A fig! ‘Tis in ourselves that we a
re thus or thus. Our bodies are our gardens, to the which our wills are gardeners. So that if we will plant nettles or sow lettuce, set hyssop and weed up thyme, supply it with one gender of herbs or distract it with many—either to have it sterile with idleness, or manured with industry—why, the power and corrigible authority of this lies in our wills.”
Othello Act 1, Scene 3
Was Iago right? Am I really in charge? A Twitter quote today said something similar 
I quite like the idea of my will power being the gardener and that this gardener can nurture new growth through good and bad weather. This means that I can choose how I care for myself, that the seeds that I choose to sow and cultivate will shape me.
As someone with several chronic conditions I have lost things that made life worth living. Independence, mobility, waking up without pain, spontaneity, feeling carefree. But we all lose precious things throughout our lives, whether suffering an illness or not, as life constantly evolves and changes. As the gardener, I must learn to appreciate the new blooms as they appear in my garden; to take one day at a time whether thunderclouds gather or the sun shines; to tend and care for this sometimes failing garden in order to appreciate the “rich and productive” things that do still make life worth living. Coffee with friends, a child’s excitement, a partner’s touch, a faithful pet, favourite meal, or the days when the sun shines.
So as we celebrate the Bard, remember fellow spoonies that rather than viewing life as a punishment because of what we have lost, look to the future with Shakespeare for “What we are is up to us”.
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!
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Life With Chronic Illness
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