A Year on…life as an #EDS zebra with a spinal cord stimulator & #chronicpain

I’ve really struggled to get my act together over the last 10 days and write.  You may have noticed a gap in my posts – POTS symptoms in the heat followed by a migraine! This time last year I was mid spinal cord stimulator trial and planning my girl’s birthday, that is I was carefully pottering about with a massive dressing on my back and an electrical flex sticking out my side attached to a magic box of tricks handing out instructions!  So this also means I’ve been blogging for a year.

My kids really could not understand why I would feel the urge to write or why anyone would want to read anything that their mum wrote.  At first PainPals started out as a means to let friends & family know how I was getting on, to cut down on the number of repeat conversations. I had been really helped by info that I’d found online, particularly on Pain Support UK & by a lady called Tina Worth,  when I was first referred to St Thomas’ pain unit, so I figured that if I could help someone else at the same time this would be a bonus.  I never dreamt that I would link up with so many people, find so much help and support out there or that so many of you would want to follow me.  I am really grateful.

I still remember arriving at Guys hospital at 7 am and being the most scared that I had ever been before surgery.  This wasn’t going to be the longest, the most complicated or even the most painful surgery that I had undergone – but it really felt like and still feels like there was the most riding on it.  It offered hope and if this trial didn’t work then that hope for relief of the chronic back and leg pain was gone – and to continue living like this was not something I could contemplate.

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But life goes on and I want to recap the last year – the difficult bits, the positive bits & well the rest!  Has the spinal cord stimulator worked is the question that most people ask. Yes & no. Probably the hardest part of this journey is learning & accepting yourself and then explaining to family & friends that this is not a cure.  I have permanent nerve damage & a permanent genetic condition.  Would I go down this route again? Absolutely.  Whilst the scs is not the be all and end all for me, it has given me relief and some control back.  I have to admit that I still have “stim envy” for those who are having 24 hour permanent stimulators, as I have to turn mine off every few hours.  A “buzzing” stimulator also has to be switched off to drive – meaning that I can’t drive as I am unable to sit in the car without it on – and should not be left on whilst sleeping. So painsomnia again!  I understand that different surgeons use different devices, there is a cost, and that in the UK high frequency devices are only licensed by NICE for one specific diagnosis.  But….I still envy my friends who are able to have them on all day!

I have written posts about drugs and chronic pain, and I do feel proud that I’ve managed to come off the high dose of oxycontin that I was on a year ago.  It was not easy!  In fact I think that my bloody mindedness was what got me off and the biggest benefit must be the kids saying that I am like the old me again.  A downside is that the opiate was masking my increasing Ehlers Danlos pain and now the pain in my hips, shoulders, knees etc is much more acute and disabling.  I can’t manage without pregabalin(lyrica) and am still on the maximum dose for my nerve pain – St Thomas’ have said that I may never be able to come off it.  But I’m about to start a trial of a cannabinoid hemp formula supplement which I will review on here, so watch this space for some (hopefully) good results.  My autonomic nervous system has deteriorated and symptoms such as fainting, headaches/migraines, circulatory problems, postural changes do seem to have worsened since I had the electrodes implanted.

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Blue POTS fingers

No one is able to confirm if the stimulator could be increasing other symptoms, but I do wonder as it is the spinal cord and thus the nervous system that it is acting on.

Positives from this last year have been joining social online communities.  I had no idea how anything worked this time last year and my kids would laugh at me -facebook was totally their domain. But the support that I have found from fellow spoonies on wordpress, the amazing Julie Ryan and Chronic Illness Bloggers, Ehlers Danlos Uk & Twitter has been beyond any expectations.  The realisation of how many of us there are and how many families who support & are supported is simply staggering.  To find the Twitter #SpoonieSpeak set up by Tania from http://www.WhenTaniaTalks.com on a Friday evening to a new EDS chat that I stumbled upon last week, there is so much support & good feeling toward each other.

I still struggle to accept my limitations and am pretty rubbish at pacing, but I have accepted this year that a wheelchair gives me more freedom and that whilst my spinal cord stimulator has helped to manage pain, I am one of the third for whom the disabling factors of EDS get worse with age.  I’d rather my boys – young men now – didn’t have to get me out of the shower and dry me on a bad day…..in the humid weather last week I had breathing problems after a shower and the eldest’s main concern was that I didn’t die whilst naked. Charming!!  There was an article in a tabloid recently about some ladies who wouldn’t let their partners see them naked because they were worried about saggy breasts post feeding, caesarian scars or stretch marks.  They should be so lucky to have the choice – and only one scar – they should see my patchwork.  We have to laugh as all too often chronic conditions rob us of dignity & leave us in PJs.

On a brighter note I have managed to join 2 book clubs and reading is certainly easier without the opiate background to enhance my brainfog.  The first has been a local group that we found through Google Meet ups and Duncan & I both go along – probably helped to persuade him when he knew that it met in the pub!  The second is The Book Club on facebook which has been amazing. 14222267_10154600381361495_2740355709948892258_n I feel honoured to be able to read and review the works of authors who are also members – I hope that you have enjoyed some of my reviews that I have published on here.  Next month we have tickets for a birthday event for this group in London and I really hope that I am well enough to attend & actually meet some of these lovely people.  Think I might have to buy that wheelchair to get me there – we’ve been a bit slow as I’m still not quite sure what to invest in.

At times I feel very aware that other amazing bloggers seem to publish something every day and I just don’t seem to get my act together, or feel that I can write such inspiring pieces (have you read Genevieve at http://www.shipwithnosails.com or Ness at http://www.TheGirlWiththeFiveLads.co.uk ?).  But it is through these lovely ladies such as Amy at http://www.SmilesintheTrials.wordpress.com that I have drawn support & understanding and new friendship.  A year ago I would never have imagined that there would have still been any interest for what I might post or tweet, but here I am, still writing, making birthday cakes when I can and more importantly still holding my head up high…..well most days!

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A year on out for Lucy’s birthday
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With 3 generations….birthday girl with mum and grandma

 

Poor mobility: Ehlers Danlos v chronic pain Norfolk part 2

In my last ramblings I told you how I found the wheelchair really did help to increase my freedom whilst on holiday.  I have since started to receive some useful tips about the type of chair to really help increase my independence as well as my freedom, and have filled out the forms for the NHS service.  Not sure how this will work out, but we have decided as a family that a wheelchair will become a permanent feature in the family.1069398__safe_solo_oc_simple+background_transparent+background_earth+pony_wheelchair_handicapped_artist-colon-sketchydesign78_oc-colon-melody+shine

Something that I hadn’t expected was that health problems other than the chronic back & leg pain would necessitate the need for the chair whilst we were away.  The weather was beautiful and we were really blessed, but – and I do know I shouldn’t moan – it was extremely hot and humid.  I can already hear some of you shouting “but the woman can’t cope with the cold, or air conditioning, so surely hot summer weather should be good”!  You would have thought so – but for many of us with chronic conditions our bodies become highly tuned barometers and actually can’t cope with any exoctopus-the-pirate-1412024-639x470treme changes.  So becoming too cold or too hot will have an effect upon the nervous system, which in turn controls all the other systems of the body.  This is why one person can seem to have such a Pandora’s Box of conditions –
and once that lid is opened they can come tumbling out together or appear slowly over time.  We are all different and I do now realise that many afflictions that I have had throughout my life are actually all part of the Ehlers Danlos.

For as long as I can remember I have felt rough when the weather is humid – headaches, migraines, nausea, swollen feet & ankles,wrists & hands,  dizzy spells – all in varying degrees, but over the last couple of years I have had an increasing number of faints, black spots in front of my eyes and dizzy spells. puppet-2-1623730-639x425 The sudden sweats are awful – I feel like I’ve been in the shower, but no they aren’t “hot flushes” as I can feel quite chilly.  So during our week away the wheelchair was great for those very light headed spells when I was struggling to see.  It is all very well the nice neurologist telling me that I must lie down when I get the feeling coming over me, but that isn’t so easy when walking the coast path or perusing the gift shops.  I have said in a previous post that I don’t have an actual diagnosis as yet, but I have become increasingly aware that the symptoms fit in with a POTS picture – that is postural orthostotic tachycardia syndrome – or similar and this is more common in the Ehlers Danlos population.

My GP is aware and as I did a good swoon in her surgery last month, she advised me to increase my salt intake. salt-spoon-1318134-638x350 On one particularly hot day, Duncan had gone into a vinyl store and my girl was pushing me when we stumbled,quite literally,upon a butcher’s shop with a basket full of pork scratchings for sale outside the door.  This is probably not to be recommended as the healthiest option, but a hand full of these certainly helped me to feel better.  This last week at home has been tricky as the symptoms have been rough again and the bright light during a day out triggered a migraine.  I find that my senses become heightened, particularly the sense of smell – not good when the family pet has a rank case of halitosis – and taste immediately prior to a turn – be it a faint or a migraine.  The day out that pre-empted the migraine was to a local National Trust property with mum, Dunc, my daughter & nephew.  I can’t believe that I am saying this, but I missed the wheelchair!  I felt rough, it was a lovely day and I couldn’t go for a walk with the family.  I forced myself to walk through the flower gardens, but every step was painful and I think that the impulses from my spinal cord stimulator combined with the bright light may have been making the head pains & dizziness worse.light-texture-1195217-640x480  Within a short time of getting back into the car, the nausea had started and I had visual disturbance, followed by severe head pains. Great, something else to sort out!!

This weekend has been just us “girls” as all the men are away.  We’re doing ok, but my girl, having already relocated both shoulder joints when I woke up, then found me passed out on the bedroom floor yesterday.  She is becoming quite the expert – good job as her own shoulders slip & slide, and she can’t stand up without seeing stars.  I feel a more detailed EDS post coming….

 

BTW: hope you like the new PainPals logo! painpals logo

A Helping Hand – or Stick, or Crutch

I was getting ready to go out the other day, and as every self respecting girl (well girl in my head!) attempts to do I was trying to coordinate my wardrobe.  T shirt – check; jeans – check; jacket – check; shoes & handbag – check; nearly there…..walking stick – hang on a minute!  No blue walking stick!

I remember clearly a few years ago when a mum at the school told me that her daughter, a friend of my then “little” girl, had drawn a picture of a girl with a pink stick and declared “I want to have a pink sparkly stick when I grow up just like Lucy’s mummy!”.  If I’m honest at the time I didn’t know whether to laugh or cry.  My dad had thought it would be funny to buy me my first walking stick for my 40th birthday and I still wasn’t too sure just how hilarious this was – life begins at 40….but not sure a stick is every woman’s dream gift!!  But on the other hand how great that a little girl didn’t see me as some old crock who couldn’t walk properly, but rather she saw the pink, sparkly stick as a desirable item.  Well, what little girl wouldn’t covet something covered in pink & purple glitter and sparkle??

Since then my collection has grown, and I figure that if you need a walking stick at my age then it really should be snazzy…..and match your outfit.  Vanity? Definitely. Essential? Sadly these days, yes!  Over recent weeks the pain in my hip has become more troublesome and I am using the stick in the house now as well as outside – I have been a very proficient furniture walker.  I’m sure that my right side has been compensating for the nerve and chronic pain issues in my left side – resulting in a flare of EDS & dodgy collagen in my subluxing right hip joint.  This brings me full circle to my first point – that is that I am missing a blue themed walking stick in my collection!

For some fun I’ll show you the canes that I do have – please note that this is just my opinion of a brand that I own and I have not been paid to promote any manufacturer.  My walking sticks are manufactured by Switch sticks, a firm based in London, and are folding adjustable, stylish & affordable. They advertise as ” Switch Sticks are the range of award winning stylish walking sticks, crutches, seat sticks and accessories that keep you moving and looking good. They are tough, durable, lightweight aluminium and are height adjustable making them the perfect fit for most people.  With new designs twice a year Switch Sticks are the designer walking aids to be seen with and suitable for both men and women.”

The Switch stick folds up neatly for those who just need it for occasional use or wish to take an extra in a suitcase…..to colour coordinate, of course…..and comes with a wrist strap and carry pouch.  I’ll have a look and list some other similar makes too.  I really like the Switch because it is sturdy and has a great rubber foot, which can be renewed…..but I guess the greatest draw is the fab range of colours and patterns!!  They retail in the UK for £39.99 – https://www.switchsticks.co.uk

My range……

 

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When my body parts are really failing to synchronise and play ball, I use forearm crutches.  This particular brand was recommended to me by a friend who had seen a review on an EDS site.  They are manufactured in the UK and are aptly named the “smartcrutch”, as they have such obvious features for comfort that our good old NHS crutches lack.  A great rubber non slip foot, adjustable height, but also a good supporting forearm rest that is adjustable.  For those of us with dodgy wrists, elbows and/or shoulders this is a godsend to help relieve the pressure on joints and ligaments.  The forearm rest is padded and can be adjusted from a vertical angle through to a horizontal at 90 degrees to the floor, and is finished with an easy to grip rubberised handle which is also adjustable for different arm lengths.  Finally…..yes, they too come in a great range of colours!!  £89.99, but if registered disabled they will be VAT free.  What’s not to like??

http://smartcrutch.co.uk/

Whilst I don’t use the crutches all the time, and my physio feels that they can actually put additional stress on the shoulder/pec major ligaments, when I do need extra support they are great and I do stand up straighter with them…..of course the tonne of titanium and electrode leads help with that too!!  I’ve given up explaining that the reason I’m so upright now is in order to get maximum contact between my scs electrode and my spinal cord.

Some other websites that I’ve found:

http://www.james-smith.co.uk/product-categories/walking-sticks

http://www.classiccanes.co.uk/catalogue/Fashionable_Canes.html

www.walkingsticksonline.co.uk/

http://www.fashionablecanes.com/

Meanwhile, I’m off to do a bit of colour coordinating…..where did I put my husband’s credit card??

 

 

Taste Buds, Drugs and Red, Red Wine

miley-tongueA 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.

images (26)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.images (27)  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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Red Red Wine

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…

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Selfies – good or bad?#body image

12797598_167283200324894_1482877079_aMy beautiful daughter stood up and gave a talk with this title at the end of last week.  Of course I’m biased when I say beautiful because I’m her mum, but with her petite, shapely frame, huge eyes and long blond hair we see the boys sneeking looks when we are out (although her brothers would never admit it!).  What I’m really referring to though is her lovely personality – she is caring, compassionate, the peace keeper in the group, always fighting for a cause or the underdog.  No, she isn’t perfect – she leaves her clothes over her floor, needs nagging to do her homework, is disorganised, spends too much time on her ipad – in other words is a teenage girl.

But she doesn’t like what the selfie culture is bringing out in her friends.  The obsession with posing in crop tops and layers of makeup.  So she went away and looked at statistics, including anorexia, suicides and body dysmorphia, and stood up to speak to her friends.  She doesn’t find this easy and img_1165initially the girls laughed as they thought she was joking when she started with the words “Selfies – good or bad?”, but she talked and they listened.  Hopefully it made them think for just a few minutes.

Years ago as a post reg nurse studying for a Head & Neck cancer qualification, I chose to write my dissertation on body image, or rather the effects of altered body image.  There was very little literature – mainly studies by the American Mary Jo Dropkin and the book by Mave Salter.  Body image was a touchy feely subject that we didn’t really talk about, and certainly not in relation to ourselves.  How times have changed!  The impact on my patients undergoing major, disfiguring facial surgery should not have been underestimated – for not only was there the obvious physical changes (removal of voice box, tongue, nose, eye, mandible, sinuses or a combination) but the alteration to voice and speech, the ability to eat and drink, the impact on relationships and social lives.

imagesToday I think about the impact of hidden illness on body image and self esteem.  The increasing need for perfection in our social media culture is tough enough on the healthy, but when an illness creeps insidiously into your life it can rob you of so much that we take for granted.  On a course in the ’90s for the care of people with HIV and AIDS, the lecturer asked us all to define ourselves in a list.  Most comprised of nurse, girl/boyfriend, wife/husband, parent, child, lover, friend, sibling………..we were then challenged to imagine chunks of this personality being eroded away with no hope of cure.  Of course the outlook with an HIV diagnosis is today very different, but since finding myself living with chronic pain, worsening EDS etc, I have thought back to that day often.  To find that your partner’s relationship has changed from that of your lover to that of your carer, your teenagers have undergone a role reversal and are taking you to the toilet, helping you to walk and dressing you and, most importantly my father would tell you, as parents of the nurse daughter who was supposed to look after them in their old age, he doesn’t know what they will do now!!  But writing seriously, my own self worth has shifted significantly.  I no longer feel like the person that I was supposed to be.  Yes we can all say this as we grow older and our lives don’t take the course that we had envisaged – after all I hear you sigh, how many lives do pan out just the way we dream in our teens??

Chronic pain and back surgeries have robbed me of my independence.  This is probably my most prized possession that I have unwillingly lost.  It affects all areas of my life from just throwing on my coat, grabbing the car keys and popping to the shops to needing help to sit up in bed in the morning.  The reality is that I constantly have to rely upon other people to take me to places, to remember to ask if I would like a lift because I feel like a nuisance for constantly asking, to wash my hair, blah, blah,blah….I miss my able body.  A mixture of drugs and immobility have caused me to pile on the pounds – about 3 and half stone in total.  I have never struggled with my weight, even after babies, but this has been so tough.  Initially I managed it and only gained a few pounds, but as the pregabalin/lyrica dose increased so the weight did.  I always knew that my patients said the dreaded pregabalin piled on the pounds, but you cannot understand until you experience it – the fluid retention, one day being able to wear a watch and the next not – and the fact that the weight may go on very quickly with the drugs, but it doesn’t come off easily when the drugs cease.  I know that other people think I’m mad, I’m tall and carry it easier and that this should be the least of my problems.  But staring at a wardrobe full of clothes that no longer fit just adds to the decreasing confidence and at times self loathing.  I miss my able body.  The tiredness, lethargy, feeling like I’ve run a marathon when I’ve actually only been to the cinema – catching a glimpse of myself in a shop front creeping along with a walking stick, albeit a pink, sparkly one!  I have turned 80, aging at an ever increasing rate, giving new meaning to the aging process.  I miss my able body.

Yet I know I’m still one of the lucky ones.  There is always someone worse off than you, isn’t there?  So back to my lovely girl’s dilemma and I read in the press that young girls are now taking selfies of their waist sizes…..by measuring them with a piece of A4 paper!!  Yes, you read correctly and if this isn’t going to have a negative impact on the body image of healthy youngsters, god help the unhealthy amongst us!!instagram-in-yeni-cilginligi-a4-kagidiyla-selfie-6752966

Reflections and resolutions

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)