What we are is up to us….in recognition of the Bard

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 thereromeo & juliet quote

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 aShakespearere 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 CglAZQwXEAUz1Xj

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”.

 

Finally Facebook!

 

I have been convinced after years of refusing, to finally join Facebook.  It has always been something that I have left to the kids, occasionally looking through their friends pics and being accused of stalking!  But having found myself on social media whilst on the receiving end of a pain flare, I inadvertently joined several “chronic” groups through Duncan’s account.  He rarely uses it, so imagine his surprise when he started getting very regular updates over the last couple of days every time a blogger was posted on Chronic Illness bloggers!

So I have linked my blog to a Facebook page – Pain Pals Blog – as well as my twitter feed, and would really appreciate it if you would follow the links and “like” the page for me.  I have really enjoyed starting to be involved in the spoonie and chronic community and hope to grow my blog & page for and to support friends.

Thanks, everyone – all suggestions gratefully received.images (18)

Another Pain & farewell to brain fog

#chronic pain #chronic illness

Easter saw a different pain in our household, with hubbie experiencing the nearest to childbirth that a man can.  Initially he blamed back pain on a football club that he runs for 6 and 7 year olds, but as the intensity rapidly increased over a 2 hour period we both knew that something more was going on.  So I packed him off with my dad as chauffeur and the 17 year old as escort to A&E, with a strong hunch what was causing the problem.  Son was given strict instructions to keep in touch, ask questions and let me know what the doctors said.  Do you think he did?  Eventually I received a text with one word……MORPHINE!  What does that mean, Olly??

My hunch was correct and blood tests came back showing renal colic, or kidney stones in layman speak.  Allegedly the most acute pain and akin only to labour.  When I finally did speak to my dear son, he informed me that by the time his father arrived at casualty he was in agony and the initial drugs didn’t even dent it.  Oliver expressed his concern by reading his book!  The symptoms were classic(extreme pain at the edge of the lower ribs radiating to the side), except that there had been no grumbling warning signs, and subsided as the stone dropped into the bladder.  A scan the following morning showed clear kidneys, no abnormal blood tests and no predisposing factors – just one of those things!

My news is that I’m a week off the opiates.  HURRAY!  I’d be lying if I said that the last few weeks have been easy – in fact these lower doses have been harder to adjust to than the huge doses of last year.  Restlessness, stomach pains, upset stomach, increased pain, insomnia….need I go on?  The sleepless nights are unwelcome and painful, yet already my memory is returning and my desire to read and write.  The funny thing is with certain drugs that the brain slowly but surely turns to a cotton wool fog, but at first the benefits seem to outweigh the side effects.  But then the opioid shaped holes in the memory, the concentration and the well being start to turn the brain into a Swiss cheese.  I can only imagine that this must be a little what the onset of dementia feels like. My inability to think, to remember, to concentrate has stopped me from functioning normally and in certain school governance meetings I have felt just out of my depth.  This, combined with faints that may or may not be a type of seizure – hurray! – has left me unable to function as I want to.download

My GP was surprised when I told her my news this morning.  She is hopeful that I may also see some better bladder function return, but my poor guts don’t know if they are coming or going.  It will probably be a good 6 months before I am entirely free of oxycodone, so I have no plans to touch the pregabalin as yet.  But I do feel pretty proud to say that I’ve gone from 120mg twice a day to zero in 6 months…….I went to a book club last night and I’m even using Twitter.  Good riddance brain fog!images (1)

Empathy isn’t just for Xmas

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.images (7)  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”. images (8) 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.

download (1)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!

 

So, here goes……

“Why do you want to write a blog?” was my teenage son’s reply when I asked him to set this up.  That’s as good a place to start as any.

On Friday, tomorrow, I am due at Guy’s hospital brightand early for a neuromodulation trial – the implantation of a spinal cord stimulator (a  sophisticated internal TENS!) to help combat the chronic pain that I am suffering. I have read and watched various accounts online of other people’s experiences, but I want to try to put into words how this experience feels for me.  I would like to share my journey (at risk of sounding like I’m on X Factor) with my friends and other fellow chronic pain bods – you know who you are – all to be known as my Pain Pals!

I will try to update you on my progress regularly, as well as adding elements of my history and the often strange and laugh out loud moments of a body disabled by pain.

So back to my son’s question……I think that I am writing as much for me as for the rest of you.  To help to inform my friends and family, to get my own thoughts and feelings out and, if I can, to help anyone else out there who is living with chronic pain.

Nil by mouth shortly, early start tomorrow morning.

Thanks for joining me,

your pain pal,  Claire