Christmas hello!

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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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!


Busy, busy, always busy

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… 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.

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)