Oxy…going, going

On By Claire Saul (PainPalsBlog)In opiates, UncategorizedLeave a comment

Not quite gone!  But I think I should be off opiates soon.  When I attended the pain course last May I was taking 60mg oxycontin twice a day – that is the equivalent of quarter of a gram of morphine a day.  Believe me when I say that is a pretty hefty dose and combined with lyrica, some days I should not have been upright.  St Thomas’ were very definite that I had to start reducing it with a view to coming off it entirely and I have always been quite happy to do so.  My GP has been very supportive and allowed me to set my own rate, and whilst reducing from the high doses at 10mg per month it was fine.

As any practitioner worth their salt will know, this is because high doses of oxy can actually worsen symptoms of pain rather than reduce them.  A vicious cycle begins as the pain increases, so the oxy dose is increased, the pain may settle for a short time before it increases again, the oxy dose increases and aggravates the pain, and so the cycle continues.  In some cases, for instance a colleague’s teenage son with prostatitis (acute inflammation of the prostate gland), the pain symptoms far outlasted the actual infection – the poor guy had excruciating pain for months longer than he should have, missed his start at uni and all as a consequence of the side effects of the opiates.  This means that just as I had felt very little benefit as the oxycontin had gradually crept up beyond a certain point, I equally felt little difference as I gradually reduced it.  That is until the last couple of weeks, when I have hit a therapeutic dose!  f8ae6ae55a608449bfb0aec2e627e162

An upside is that my memory is better than it has been in a long time, although the family might not agree.  But a negative is that not only has the pain felt worse, but my sleep has deteriorated again as my new pain relief – the stim – cannot be on at night.  I haven’t even started to think about reducing the dreaded Lyrica(pregabalin) yet, and I’m on the full wack of 600mg per day!  This is one to write about another day……

We discovered the Carers’ group outing to the Odeon cinema today – Dads’ Army was the film to entertain us.  It brought back lots of childhood memories having grown up watching the original tv series, and had a fantastic cast including some great female characters.  images (12)The plot was as daft as ever, the men as dippy as the women were sensible, and the Home Guard, with just a little help from their strong ladies, saved the day against “MR HITLER”.  We were some of the youngest in the cinema, and even in a carers and cared for group were the last to make it out.  Duncan very nearly tumbled down the stairs with me today as my leg/foot were numb and my balance indicated that I’d been on the booze when I stood at the end!!  Very good first impression I created.  I’ve said it before but the stim doesn’t stop my leg going dead…..does anyone out there have any helpful tips??

 

 

Engineering, kilts & haggis!

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

I really don’t know where January went.  Between parents’ evenings, option evenings, governor duties and arranging a careers evening, the different schools have taken over my waking hours.  The careers evening is an engineering event for 16 – 18 year olds, arranged with the alumni committee from my old school.  I’ve exploited all the contacts I could, including the livery company in the City of London for whom our engineering student is an apprentice – we are hosting it in their amazing venue at London Bridge.  Thank you WC of Scientific Instrument Makers.

The family have all been roped in – father, brother, husband and son – whether they want to or not!!  But the biggest joke is that so many people assume that I am an engineer……….I just have to say that no, I’m not, but I do have my very own amazing bit of engineering going on in my spine…..titanium, screws, electrodes, battery!

Thanks to the people who have been in touch checking where I’ve been.  I’m ok – not great – but ok.  I had a check up at St T’s and the nurse was happy enough with me.  She was pleased with my usage and time switched off; apparently I increase usage over the weekend and then to hit a peak on a Monday….funny that, what with a house full of teenagers, washing, cooking, dog, MESS!!  I actually needed to change the batteries in the controller last week – for anyone with a new stim, the batteries lasted me about 3 months and these can be run to empty.  Not to be confused with my implant which mc83521247ebb8e5f7485babf99e9d143ust NOT be run flat…..unless I fancy a quick date with my friendly Guys’ anaesthetist!  The thing I found tricky was quantifying exactly how much the stim has reduced the pain as it varies so much.  I know what I should be saying and what the hospital want me to say, and I can say that I definitely have some control back…….even if that is by lying flat on the ground.
Those of you with a tingly scs will know that this increases the parasthesia enormously as the spinal cord lies on top of the electrodes
– those of you who don’t, try to imagine sticking your fingers in a socket and the resulting hairstyle!!

This recent bout of cold weather isn’t great for those of us with chronic pain.  One friend said he has actually been really grateful for global warming keeping this winter so mild!   Imagine that feeling when ice cream hurts your teeth……then put it into your back, down a limb and out of a hand/foot multiplied by 100 and you will start to get the picture.  Duncan and I went for a walk yesterday afternoon, having been told by middle child that it was quite mild outside.  I don’t know what he was talking about, because it was freezing and there was an almighty battle going on down my leg between the wind, the pain and the stimulation.  With chronic pain, it is as if your body’s wiring has malfunctioned and parts start misfiring and become hypersensitive – for me it includes my gut.  My biology drummed the word peristalsis into us at school, and on Sunday in the park all I could think of was Mr Parfit’s peristalsis as I heaved all the way home!!

There is something new that I managed to do with my stim helping since my last post……..attend a Burn’s night celebration at our daughter’s school.  We were given the tickets at short notice by a friend and had no idea what to expect.  Duncan chickened out and turned down the offer of a kilt, instead opting for a tartan dicky bow……..was he worried about getting the knees out, or what a man really hides under his kilt????

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I was at the wrong Burn’s night if this is a man in a kilt!

The haggis was great, as was the piper and the Scottish DT teacher, resplendent in full kilt, who spoke Robbie Burn’s infamous words as he broke the haggis open. download (3) Something I hadn’t mentioned to Duncan was the Scottish dancing after the meal – his worst nightmare.  Funnily enough the stim really doesn’t give super country dancing powers – and Duncan said that for once he was delighted I have a bad back!  He only narrowly escaped being pulled up to join a reel……..

 

 

The Individualism of Major Tom

On By Claire Saul (PainPalsBlog)In UncategorizedLeave a comment

This morning we awoke to the news that David Bowie had died.  The world is in shock because this “star” had kept his illness private – completely understandable, but in an age of celebrities who live every second of their lives in the full glare of the world’s gaze, do we feel aggrieved when a megastar chooses not to share everything?  How must it feel when the world thinks that they know you, even that they own you?

The vicar who gave the “Pause for Thought” on Radio 2 this morning spoke of his need as a teenager to conform, to be one of the crowd and that David Bowie was a bit too “different” for his insecure 15 year old self to follow.  All day Bowie has been described as an “individual”, so much so that far from wishing to be one of the crowd, one of a particular music genre, he actually went out of his way to be completely individual.  A chameleon one presenter said; constantly throwing off his identity as he became tired of one persona only to slip into another.  How many have the confidence to invent themselves as a space alien named Ziggy Stardust and actually possess eyes of different colours to set off the transformation.  But rather than a new identity, I wonder if each new persona was a disguise?  A need to hide behind different sets of makeup & hair colour in order to protect a core individuality, rather than to reveal himself to the world?

But sometimes those traits of individuality that mother nature has endowed can feel like a curse.  Not everyone wants to stand out from the crowd and if it is a disability that marks out an individual, it can be most unwelcome.  A birth mark, a stammer, a hearing defect, a chronic illness, a fatal illness.  We do all cope with whatever is sent to try us in our own individual ways – and if this is the rock star bowing out with grace and a final hurrah album, then he truly deserves his final applause.

 

 

Reflections and resolutions

On By Claire Saul (PainPalsBlog)In chronic pain, Depression & mental health, Ehlers Danlos Syndrome, UncategorizedLeave a comment

The end of the year always feels like a time for reflection, doesn’t it? Or is it just a time for looking ahead and making those dreaded New Year resolutions, only to broken by Jan 5th!?  I really, really want to be looking forward for my own sanity and for those around me – but not before I reflect on this year.  Please indulge me……

It has been a tricky year in our house for a variety of health issues and the related monetary concerns that being unable to work brings.  It is almost exactly a year since Duncan was given the correct meds for his depression and was able to start on the long road to recovery.  At first, when he was so ill and unable to think straight, he was adamant he wouldn’t take drugs.  During my time nursing I cared for many patients and relatives who resisted antidepressants and we had the “if you had a headache you’d take a paracetamol; you have a chemical imbalance that just needs a little extra help to be put back to normal” chat.  At least when it was my own husband, not only had I this medical experience, but I had also been there myself just 2 years ago.  As a society we still prefer not to discuss issues of the psyche, whether our own or others – there remains a stigma around mental health problems.  Maybe this is part of the reason that so many of us feel an overwhelming need to refuse medication – feelings of shame, embarrassment, failure, fear, addiction concern, to name a few.  I remember feeling like a huge failure when I joined club Prozac and illogically ashamed.  It took several months before Duncan was convinced of the need for chemical help and then the first drug only went and made his symptoms worse.  But with great support from our GP and the correct drug, he has made progress.  We would probably both say, about each other, that seeing your partner in the grips of something that you have no control over is the hardest thing to witness.images (10)

Then one of our sons was also ill and this really did knock us for six, as we had never seen him like this before.  It emerged that he had recognised certain symptoms when reading articles with titles such as “Existential depression in the gifted and talented adolescent” – I was lost by the end of the first paragraph!  Happily with the right support all round,  we all have a better understanding and things are back on an even keel.  But our youngsters today never switch off.  They are constantly over stimulated as they rely on social media to communicate, and have a powerful hand held computer in the shape of a mobile phone on tap 24/7.  Overthinking has always been an issue in the very bright, but I wonder if we will see it increasingly becoming the norm?

My appointment with the specialist pain team at St Thomas’s came just in the midst of these crises.  I warned the psychologist that she had caught me at the end of a particularly stressful and emotional week, but she told me to describe everything from the start of my back problems.  “But that began in 1991 – should I really go back that far?” “Yes, please” “How long do you have?” Poor woman didn’t quite know what had hit her!!  This in turn led to my 2 week inpatient programme and subsequently the implant.  It all sounds terribly easy like this……

I have had some highs and lows over the last fortnight.  One real success was a trip to London to visit the student with the other teenagers.  We decided to brave the train rather than London Xmas roads, and I even had a member of BR help me to get into the carriage which made me feel about 90!  We had a lovely meal on the South bank and then enjoyed following our three offspring around the Xmas market. download (2) So nice to see them actually getting on.  In their black skinny jeans, I couldn’t help but compare the legs to strips of liquorice…..but I digress.  We walked to Trafalgar Square to see the Norwegian tree and then the kids went back with their brother to the student flat, whilst we made our way slowly back to Waterloo.  It wasn’t easy, my foot was dead and my leg kept giving way, but with the help of the stim (and Duncan half carrying me!) I did it – a far cry from a similar visit last year when we went to the theatre on the same night as the tube strike.  That was one very long trek and never has  Waterloo  bridge felt so endless – it took 45 minutes to get me across the bridge alone!  A couple of walks in our local park were made so much easier and even enjoyable as I was able to whack up the stim and counter the leg pain, even sitting outside for a hot choc.

But I have also learnt that the stim can only deal with so much!  As the weather has become colder over the last few days and the nights have been so windy, so my barometer body has played up accordingly.  My EDS has left me with extremely painful shoulders which dislocate regularly – Duncan monitors me when asleep to ensure that I haven’t lifted an arm above my head…and the weight then pulls itself out of socket!! The back pain at night has been reaching a peak and I actually fell asleep with the stim turned on, and a trip to our local shops became extreme as both the weather changed and my leg pain rocketed.  Even the stimulation couldn’t do battle with the nerve pain exacerbated by cold wind and rain – we couldn’t even stand upright – and the then familiar nausea and vomiting that follows when my body experiences large changes in temperature.  In this case it was stepping into our warm home!

For someone living with a chronic condition, looking forward to a new year can become something to dread rather than to celebrate.  At times the thought of living through another year in pain has been too much to contemplate even with the love and support of family and friends.  So this New Year, as others resolve to try that new diet, join the gym, do “dry January” etc., etc., I will continue to take each day as it comes.  As a family we will move forward together, continue to battle the intricacies of the benefits system, look toward Dunc returning to employment (albeit on a different level), the kids being teenagers(!) and for me to cautiously look to a year with some control over my body, that has been stolen by chronic pain, being restored to me with my stim.  I hope that we can remember that there is always someone worse off ……

Finally, after a very long post which I started on NYE, as you recover from festivities – I wish all my Painpals a peaceful and healthy 2016! download (1)

Christmas hello!

On By Claire Saul (PainPalsBlog)In Uncategorized1 Comment

A very happy Christmas to all my Painpals – local and online.  The teenagers were very late up this morning and for the first time stockings weren’t opened in our bed as we got fed up waiting for 2015-12-25 12.47.12them!  This is the only year when all 3 will be teenagers……….more later but enjoy these silly pics for now!

 

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Got You!!!!!File 25-12-2015, 13 46 23

 

 

 


Empathy isn’t just for Xmas

On By Claire Saul (PainPalsBlog)In Christmas, chronic illness, Depression & mental health, family, friendship, Happiness, Kindness, mental health, Uncategorized7 Comments

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!

 

Busy, busy, always busy

On By Claire Saul (PainPalsBlog)In Uncategorized1 Comment

This last week I have been trying to carry on at a normal pace, almost as if I hadn’t had implant surgery 2 months ago.  So I attended a governance half day conference, started up the year 6 club I run, attended a meeting at each of the schools where I sit on committees, observer-the-winters-tale-photo-by-johan-perssonsaw Kenneth Branagh’s A Winters Tale live at our cinema ( long but a fantastic cast – particularly the young stars, Tom Bateman and Jessie Buckley) and attended St Thomas’ outpatients.  Needless to say, I completely overdid it and then made a birthday cake for my nephew, which we delivered to Witney at the weekend.  I had forgotten what germ pools children’s birthday parties can be, but after time spent in the soft play barn my brother, Duncan and I have all gone down with the lergy.  Only my sister in law has escaped….so far!

My appointment was in the joint Pain and Urology clinic with a view to positioning an additional electrode lead to attempt to give my bladder back some sensation.  We have decided though to leave well alone at the moment, as there are no guarantees that a further procedure would not cause lead migration and electrode movement for the existing implant.  Equally there is no guarantee that the procedure would even help my waterworks!  No brainer…..so I must now try to retrain my brain/bladder,  otherwise known as potty training.  Of course this should become easier as I continue to reduce the drugs as another side effect of strong opioids is retention.  http://www.medscape.com/viewarticle/763040_4

Where does gain morph back into pain?  I saw a different CNS on this occasion and was told that I’m doing “brilliantly”, but that I’m probably expecting too much of myself too soon.  This was the first time that we were told that it takes a good 6 months for the body to adjust and for the person to become adept at using the scs.  All my concerns about increasing levels, struggling to cover my foot pain in the cold and leaving the stimulator on for too long were swept aside.  I left feeling a great deal happier.

I met a young mum at the weekend – also at the birthday party – who had also received a scs recently.  Funny really, after my appointment for a trial in bladder stimulation, as she has a sacral stimulator for function rather than pain control.  She is in the forces and told us how she has served in Afghanistan and Iraq, yet it was the birth of her first child that has left her body with irreparable internal damage. images (5) The stimulator has been implanted to help her regain some function of her bladder and bowels – it seems almost beyond belief that in a developed country a young woman can still experience this level of damage and dysfunction as a result of childbirth.  I am full of admiration as not only has she had another child, but she remains in the forces whilst juggling life as a wife & mum of 2 small children, living with this unseen disability.

As for me, well a hacking cough, headache and fever do not combine well with back pain.  In fact the scs has almost made my back and leg pain even harder to cope with at times today.  I wonder why this should be?  I think I’ll decamp to the student’s bedroom tonight (keep encouraging him to take more of his things to his uni flat, but still he comes back.  Must change the locks…….kidding, maybe) as we haven’t quite got our coughing in unison yet and will toss & turn all night for the wrong reason!images (6)

Alarm bells

On By Claire Saul (PainPalsBlog)In Uncategorized1 Comment

We attended an options evening tonight at my daughter’s school.  The introductory talk had been given and we were enjoying the refreshments on offer – smoked salmon and cream cheese blinis, honeyed cocktail sausages all washed down by the obligatory glass of vino – when I commented that we would have to walk through the security sensors to go into the library where the staff was assembled.  “I wonder if I will affect them?” I mused, to which daughter glowered “you’d better not”.  We passed through without incident, and she disappeared off to speak with the relevant teachers about her subject choices.

So imagine her disgust and embarrassment as we left the event and suddenly the alarm went off, the red lights were flashing and everyone was looking at us!  Hurray, I’ve activated my very first security alert with my stimulator!!

You shoot me down, I won’t fall, I am titanium

On By Claire Saul (PainPalsBlog)In chronic painLeave a comment

images (3)At the moment my downfall seems to be my titanium.  Along with storms Abigail and Barney – who names these storms??  Isn’t Barney a big, purple dinosaur?  Every time that we have a storm, particularly wi
th high winds, a couple of things happen in our house.  The  first is that our crazy mutt stalks the house panting and it is the only time that he won’t  stay in the kitchen at night.  Thunder and lightening or fireworks – he’ll just go into the garden and have a really good bark and then settle down; but when the weather is windy he becomes so upset and agitated, that I have wondered if he experiences some sort of pain.  Do the changes in air pressure cause him a problem with his inner ears in the same way that an aircraft can for us?

The other thing that happens when the weather changes is that the pain in my lower back increases.  It is more than just a drop in the temperature increasing nerve pain.  I feel a growing pressure and coldness in the spine along the whole length of the fusion and nothing will ease it.  Officially I don’t believe that there is any research or medical evidence to explain or corroborate this, but just reading other experiences online makes me think that it can’t be coincidence that so many with metal implants experience these sensations.  I do have one friend who had a titanium plate put into her thigh at The National Orthopaedic Hospital at Stanmore and she was told by her surgeon that changes in air pressure can cause changes in the titanium.  Please don’t get me wrong, titanium has led  to some fantastic breakthroughs in surgery as it is a substance that causes very little reaction when implanted in the human body.  My own experience as a nurse was mainly in the use of osseo integrated implants for facial reconstruction – that is titanium studs anchored into the bones onto which false ears or noses, for example, were attached.  These were a true game changer in the treatment and enhancement of life quality for those undergoing major surgery for head & neck cancers.  The beauty of the titanium is that the bone actually grows into the metal – hence “osseo integrated” – and gives a solid base for prostheses.

When I had my first fusion I was told that the aim was for the pedicle screws to integrate with the spine, the rods to hold it all in place and eventually the bones would fuse with the help of a bone graft.  Unfortunately the bone graft did not take and the metalwork was not in the correct position- hence the need for a revision.  For me I believe that the fusion has increased my mobility problems, aggravated my hypermobile spine and left me more disabled – yes, I do regret having the second op and would urge anyone to think very carefully before undergoing surgery.  But sometimes it really isn’t that easy being in the patient’s seat – particularly when you feel desperate & it can seem like there aren’t many routes open to you.  I felt that my surgeon was only going to refer me for scs assessment after all surgical routes had been explored – so leaving me with no option but to undergo another fusion as a means to an end.  Whilst there should be an honest and open dialogue between patient and medic, it is still a case of our lives in their hands.

Back to David Guetta’s lyrics – but this time I can use them to describe me and my pain.  I am titanium as I battle constant pain:

Pain, “You shout it out,
But I can’t hear a word you say
I’m talking loud, not saying much
I’m criticized but all your bullets ricochet
You shoot me down, but I get up
I’m bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium

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You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
You shoot me down but I won’t fall
I am titanium
I am titanium”

24 years, 7 ops – but I won’t fall!

 

The Thief of Time

On By Claire Saul (PainPalsBlog)In Uncategorized1 Comment

I was planning to write last night, but as the eyes of the world fell on Paris it just didn’t seem quite the correct thing to do.  Whilst I can’t adequately articulate how so many of us felt as events played out, I don’t think I’m wrong in saying that none of us can ever truly know what tomorrow will bring.  This reminds me of Latin lessons as an 11 year old – she has lost the plot, you are all thinking! – when I was taught by the headmaster, known to his pupils as Hissing Sid.  “What is the thief of time?” to which we would all chant “Pro – cras – tin – ation” – but we didn’t really understand.  How many youngsters do understand the concept of putting off until tomorrow what you could do today?

Of course, this doesn’t just apply to the tidying of one’s bedroom or cutting the grass.  When something life changing happens, it applies to the things in life that bring us the most joy and satisfaction, the things that we may no longer be able to do tomorrow.  Heaven forbid that it should be a tragedy of such magnitude that stops us in our tracks.  But I wonder how many of us living with chronic illness have suddenly been denied previously simple pleasures?  We had a “friends and family” session on the inpatient programme during which our nearest and dearest were invited in to understand some of the therapy we were undergoing, and also the mechanics of the implant.  One of the questions we were all asked was to name something that we had lost as a result of the illness, and something that we would like to be able to do after the implant.  Going round the circle from patient to relative to friend, the common theme was to be able to enjoy just simple tasks again – a walk in the park as a family, a meal out, sitting on the floor playing with grandchildren, playing cricket with children, a holiday.  Sometimes it is all too easy to get so caught up in our own situation, that we stop seeing what is going on around us – and this isn’t just those of us with an illness.  Every day is a challenge with chronic pain joining me for the ride, and sometimes it is really tough remembering to live for today.

I had a telephone appointment with the CNS yesterday, primarily to check that the charging of my battery is working out.  No problems there and I was advised that if I would prefer to charge for an hour once a week, rather than 2 hours every fortnight, that this is absolutely fine.  This type of battery does not need to be run down a certain amount before it is recharged – good to know – but more importantly must not be left to run too low.  If left to run out of charge completely, it would have to be surgically replaced!  She also confirmed for me that I’m not alone in needing to increase my stim level now that the weather has grown colder – although I am on a fair charge at times just to be able to feel it in my foot.  So much so that I feel sure that everyone around me must be able to see my leg doing a jig – but no one in the queue in the supermarket seemed to notice this morning!

The student son has been home this week for driving lessons – he has his test next week.  Strange really that he can fly a small plane and has his glider pilot licence before he can drive a car!  He has been taking advantage of the very nice gym in the neighbours’ garden and decided to take his mother for some physio.  The full extent of my physio was on the “walking machine” – “no, Mum, its a running machine” – not when I go on it!  Actually I did really quite well, particularly at giving out advise as son was on the rowing machine (in a previous life I used to row in an eight – Karen, remember that sponsored row up the Thames?  No one thought we little girls could do it) and lifting weights.  I’ll stick to increasing my walking speed for now……..