Stim Update!

I started this blog initially to keep a record of my trials and tribulations as I had my spinal cord stimulator implanted, but it has evolved into well, ramblings maybe!  Anyway having been reading posts on the support group site, I thought it was time I wrote a 7 month update!

I still feel that I’m learning to live life with my stim.  What I’m about to write will probably be repetitive of other posts on this site, but a recap never hurts.  Living with pain day in, day out is really hard work – exhausting both physically and mentally.  I would love to be able to tell you that having a scs has made everything better, that the pain is gone and that life is back to “normal”.  But I would be lying.  Sorry to make things sound bleak for anyone waiting for a trial, but it is important to be realistic.  Those of us under St Thomas’ know that they pull no punches on their 2 week pre trial course in order to prepare us, but everyone’s pain and experience differs so that it is impossible to predict every eventuality.

For me there have definitely been enough positives that I would do it again.  The stimulation that I feel in my leg, foot & back does ease the pain the majority of the time.  It gives me a feeling of control back.  But a downside of this particular scs (Medtronic) is that in order to continue the pain relief, it must not be left switched on all the time.  St Thomas’ recommend several hours on, several off – but I am finding the periods of time when switched off very difficult to cope with, particularly at night.  I understand the rationale for turning the device off: if the tingling sensation becomes the body’s new baseline, then there is little room for manoeuvre with further pain relief.  But this doesn’t help me when I’m climbing the walls!!  Any advice from out there would be gratefully received….download (5)

I seem to come back to negatives, but I really don’t intend to.  I guess the nature of chronic illness, particularly pain, is that it is always a doubled edged sword.Double-Edged-Sword-of-Social-Media-300x228  As you already know, another major achievement has been weaning myself off oxycontin and it hasn’t been easy.  I feel proud of myself for being bloody minded enough to stick with the withdrawal and I can report that some of the opiate brain fog has lifted.  My memory is better – my kids might dispute this – and I have taken to social media as I feel more able to read blogs and facebook, twitter reports etc – again I’m not sure that the kids see this as a positive.  For me this is a sign that my concentration is improved and that there is a glimmer of the old me still lurking.   But..again a negative,  the pain has increased – I won’t dwell on this although I can relieve it by lying on my back and turning the stimulation up! Not particularly conducive to shopping.

My own post operative recovery was relatively smooth, but one of my pain group did not have such an easy time.  We are all warned about possible complications, but I’m not sure that we really think we may be in that odd couple of percent.  The post op complication suffered by my pain pal was an infection in the electrode lead site, which of course led to him being very ill.  Again I don’t want to frighten anyone, but it is important to be prepared.  The hospitals take swabs and St Ts’ are very clear that if said swabs come back growing any organism that the whole implant must be removed as the spinal cord gives a direct route to the brain .  In this case all’s well that ends well as he had another implant placed a couple of months ago…….however this did make another decide not to go ahead with the implant trial as he didn’t want to risk the same complications.

Headaches seem to be a common side effect of the stimulator – for some people more than others.  I have had them on and off, but another friend did experience them regularly in the first months post implant.  Charging the battery has not presented me with any major problems, although I have found that I need to remain sitting as the connection is too intermittent if I move about.  But I do find that the actual implant is quite painful at times and I have seen comments on the support group from others saying the same.  I am finally losing some of the huge amount of weight that I’d gained and this leaves the implant far more prominent under the skin.  I won’t even attempt to write the language that escaped as I caught the implant, but suffice to say that the air was blue!!!

So, 7 months on…..the young engineer turned 20 and passed his driving test (not sure which is more frightening); the A level student turned 17 and visited Parliament with us and attended a Euro debate with Chris Grayling arguing for Brexit – our son’s voice and own opinions are getting louder by the day and Politics may be on the agenda for uni; the lovely girl remains as untidy as ever, as politically correct (we get told off if we tease her brother for not being stereotypically gay enough – you know, tidy, love his mum) and showing great artistic flair. Whilst the kids probably don’t notice whether the stim has made much difference to my pain or not, Duncan would tell you that 7 months on he can see a big difference, even if I can’t always distinguish the good days from the bad.  It hasn’t made a difference to my worsening Ehlers Danlos (another blog post!) So no, it hasn’t been a miraculous cure, made me better or all the comments that people say/ask the chronically sick – but yes, I would do it all again in a heartbeat to just be able to experience some relief.

2016-04-29 19.05.58                                                      Student engineer’s first lesson2016-04-29 19.04.45

A level student drawn by his sister!                                                     

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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”.

 

Grief and Acceptance

Picnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The 

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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)

Down time

Whilst we have been having fun and games here, the lovely girl has spent a couple of days with my brother & his family.  Or to be more accurate her 5 year old cousin who absolutely adores her and my sister in law who enjoys having a girlie to talk makeup, hair and eyebrows.

None of my kids think of themselves as young carers, and one of them was horrified when a concerned teacher made a referral.  I’m glad that they recognise that there are children out there who do have to take a lot more responsibility for caring for a sick or disabled parent/sibling.  So often these youngsters slip under the radar. It is important that all our young carers are able to access the few specialist groups available to them (even if they don’t think they need them!!) – see action for children; young carer; babble.

So check out a few pics of the lovely girl enjoying time out from caring for mum to play with her cousin in the spring sunshine.IMG_3162IMG_3161IMG_3167

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)