A Chronic Christmas – inconvenient illness for the holidays

Pain pals,

I’ve been a bit low on spoons recently – ok, almost negative some days over the last month or so.  Blog posts, social media & all things requiring thought or energy have been low down the list of to dos.  Over the years I have been able to soldier on through the pain and dislocations, but I can honestly say that my worsening POTS/dysautonomic symptoms have made me feel so ill and the current drugs have done nothing to help.  Tricky getting ready for Christmas then when also caring for a house full of teens/students “dying” with coughs & colds!img_20161228_093658718

Wouldn’t it be great if chronic illness gave us a break over the holidays?  When the slightest change in the weather didn’t send symptoms into flight & flare? Shame it doesn’t work like that, but instead can stop us in our tracks.  I have lost count of the number of times in recent weeks when I have had to cancel plans, let people down and cursed my inability to just get on with life.  POTS meant I missed my nephew’s birthday party – he wasn’t bothered as Uncle Duncan was much better at go karting and I had managed the tricky task of baking a Lego Star Wars cake.

The school Christmas fair and the Early Years nativity were also off the social calendar at the last minute.  My teen daughter was secretly delighted that I wasn’t well enough to drag her to her school Christmas concert!  I have cancelled coffee & lunch, rearranged and then the same again.  We are supposed to feel merry & jolly in December, or so we are told, but it isn’t always easy when your body is screaming at you.

But there have been memorable moments.  I have spent this year trying so hard to shift some of the massive amount of weight that I’ve gained (chronic pain, immobility and drugs…lyrica mainly!) and was just starting to get some of my old clothes on, when I find myself on a synthetic steroid that will cause my ankles to resemble an elephants.  Fantastic!  One of my “lovely” sons said that he hoped this would mean that I wouldn’t feel the need to starve myself over Christmas as I was going to get fatter anyway.  Think there may be a silver lining there somewhere…..Then there was the first occasion that I put on my newly acquired compression tights – an ebay “bargain” at £30, I kid you not as they retail at £90! – it was a 2 person job, with my lovely girl helping her poor old mum puff & sweat the tightest lycra you can imagine up her legs.  We were both exhausted and if ever there has been a time to feel light headed this was it.  Then I remembered why I had put them on.  I had a school reunion – an 80s decade reunion in fact – that I had helped arrange, and now I wouldn’t be able to go to the loo all day as I couldn’t get my tights up or down!!  30792624840_5e2ed23d47_o
Said day was a great success, friends showed up who I hadn’t seen since school and whilst being there with a wheelchair was hard to get my head around, I did it.  About 40 converged upon a local hostelry for further refreshment after the formal lunch. Less said about the following days the better….

 

 

The wheelchair has seen some action and helped with Christmas shopping, a meal out and dragging the dog for walks.  I must add here that none of this would have been possible without my spinal cord stimulator – whilst it does not get rid of my pain completely, I would be unable to cope without it.  I might have missed some events, but we did see a particularly entertaining nativity “Lights, Camel, Action” performed by the 5 – 8 year olds at our school – alternative name could have been “Strictly Come Nativity”. Of course the occasion when we forgot to stick it in the car, I managed a fantastic faint at the checkout of Waitrose supermarket.  I terrified a couple of young assistants who ran for water & debated calling an ambulance, but came round to hear Duncan going back to finish paying for the shopping and telling the shocked cashier “don’t worry, she does this all the time”! Well, a sense of humour is vital.  The wheelchair even saw a trip to parents’ evening at the A level student’s school, much to his embarrassment.  I did point out that it is me who has to sit in it – funny though that he finds it quite hard to get his head around me using it, and it was left at the door.  I’m sure that he wished some of his teachers’ comments had been left there too – mainly of the “needs to start working harder ” variety!!  He is such a jammy sod though that he received an unconditional offer just before Christmas – not a reason to stop working I hear myself state on a daily basis.

The final week of the school term arrived and Duncan was jetting off to Italy to meet with the design engineers at a fellow small audio company.  The original plan had been for us both to go – Audio Deva are an artisan specialist company designing fantastic turntables that Duncan hopes his new venture “Intimate Audio” will work with – but it15057249_634518260052328_1346051735637983232_n all happened rather quickly and reality was I wouldn’t be well enough.  So the student engineer found himself on a pre Christmas jolly to Genoa – just as well though as I’m not sure how useful I would have been when they stripped down a deck and rebuilt it. Daniel’s soldering skills beat mine.  This left me alone with the teens and I did enjoy the couple of days I had to myself.  I have to admit that I didn’t and couldn’t do much, but watched various cheesy Christmas movies and also managed to read some chick lit on the kindle – easier to hold when wrists are dislocating & painful!  We even hosted a small party for my book club friends.The following week Duncan went on his travels again with a trip to the in laws with the A level student, leaving me with my girl.  She worries about me but we did ok with no falls, and even managed some baking (cranberry & cinnamon donuts).img_20161124_193246307img_20161228_093523565_hdr

So it really has not been all bad.  I have missed writing and the support of my social media chronic pals, but I know that you all “get it”.  Christmas has been exhausting and I am looking forward to some R&R now, (earplugs needed with both sons at home).

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Breakfast Xmas morning – wonky cutting courtesy of Mr Saul

But the family have pulled together, some more than others (thanks mum & dad!), and we have come through the festivities relatively unscathed – they still can’t see when the toilets need cleaning though!

I hope that you have had a peaceful Christmas holiday,  Claire x

 

 

 

 

 

 

 

 

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The beautiful Italian home of Audio Deva

 

Great initiative by Tesco to safeguard disabled parking

How many times have you tried to park in a disabled bay for yourself or a passenger, only to find that none are available and that several of the cars already parked aren’t displaying a blue badge (disabled badge)?  It is so infuriating, but why can’t people appreciate just how difficult those extra few metres can be for someone who has mobility issues, or that the narrower parking spaces make it so difficult to juggle walking aids or wheelchairs?

I have just read this article in the Telegraph about a great initiative to safeguard disabled parking at Tesco stores.

http://www.telegraph.co.uk/news/2016/10/09/tescos-hi-tech-plan-to-hunt-down-cheating-shoppers-who-use-disab/

#Ehlers Danlos radio drama “Tinsel Girl and the Big Reunion”

Whilst scrolling through the BBC iplayer earlier searching for a good drama to listen to, I came across this series with the introduction “An uplifting comedy drama about the lifes, loves and misadventures of wheelchair user Maz”.

I was pleasantly surprised when I heard that main character Maz has a genetic condition that affects her connective tissues called Ehlers Danlos syndrome.  It makes me hope that the syndrome is becoming more widely known and recognised in the mainstream.  Actress, fellow zebra and patron of Ehlers Danlos UK, Cherylee Houston plays main character Maz.

Follow this link for Episode 1 of “Tinsel Girl and the Big Reunion” by Lou Ramsden

http://bbc.in/2aC2wIX

p043l2gs

 

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

First forays in a wheelchair – Norfolk part 1

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We have just returned from a week away on the Norfolk coast (East Anglia) – hubbie, the lovely girl, my parents & 5 year old nephew.  It was touch and go as to whether I would go and this wasn’t down to my health issues, but rather my adolescents!!  Anyway after several difficult days – sorry can’t share! – we left the engineer in charge.  Would we come home to a house?  What about the little car insured for him to drive?  Wild parties? House guests? A traumatised dog?  The list could be endless leaving 20 & 17 year old boys home alone.

But away I went and we were blessed with the hottest week of the year so far.  When there is a little boy in the house and you have a sea view this can only mean one thing – the beach!  Sadly this was a part of the holiday that Auntie Claire was unable to take part in.  For a start just physically getting over the pebbles and onto the sand was nigh on impossible, and then there is the issue of cold, wet sand playing havoc with the nerve pain in my foot.  Paddling is a no, no!  Fortunately good old grandma & grandad were fantastic and sat on the beach, built sandcastles and went paddling – with a little help from Uncle Duncan & our lovely girl.

 

It was important for me that I was able to do as much as possible – both for myself and the family – but without flogging myself!  Not an easy balancing act, particularly with such hot weather.  My Ehlers Danlos symptoms – all POTS symptoms, although not formerly diagnosed yet, cardiology appointment next month – were really bad in the heat and this didn’t help with the whole pacing myself.  This is a whole post for later in the week.  As some of you might remember, I had bitten the bullet and hired a lightweight wheelchair in order to be able to increase my mobility – an attendant rather than self propelled as we figured that my poor old shoulder joints would not cope with wheel turning and remain in socket!

The first thing to point out is that Duncan returned a whole lot fitter….he would like me to say with a six pack, but we were only away for a week.  This is not to say that I spent all my time in the chair, but it certainly opened up possibilities for us that wouldn’t have been possible if I was walking.  A strong plus for Dunc was that he pushed me to the restaurant on one of our evening out and was able to have a drink – the journey home along the cliff path after a couple of ciders incorporated a few wheelies!  I was able to stay out for longer than had I been on foot, we were able to go further afield and I was better able to manage my pain.  The benefits far outweighed any negative concerns that were nagging me and it was a godsend as the weather grew hotter and I fainted more!

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The beautiful sunset & sea view from our living room

Many older people started chatting about difficulties getting about, finding a suitable ramp on the coast path, why I needed a stick, had I injured myself and I am too young to be like this.  Younger people don’t really engage in chit chat in the same way, but I was aware of a few sidelong glances, not so much pity but I hope that I don’t end up like that followed by embarrassment. The night that we went out to a lively Greek restaurant, we did leave the chair behind.  Great food followed by entertainment provided by the Constanzia brothers – the sons of the owners, who in their hayday appeared on Barrymore and Pebblemill (yes, we are talking ’90s!).  Of course as the music sped up and the tambourines& bongo were bagged by the children, the band encouraged the audience to learn some Greek dancing with the assistance of the waitress.

Our beautiful girl was definitely not going to get up to dance,  the picture above is the closest my brother(who came up for a day) will ever get to dancing – that is, his son playing the tambourine! – so the Greek mama, an elderly silver haired lady turned, to me.  In days gone by I would have been the first to jump up and I really miss that me, but I made my excuses that I couldn’t and she misunderstood me.  She thought that I meant that I didn’t know what to do, so when I lifted my stick off the floor and shouted over the music that I ‘m unable to walk properly, the poor woman was mortified.  I didn’t feel upset or put out as she didn’t know – how could she?  Sitting at the table, I can put on a pretty good show of being fit and healthy, after all pain is invisible as is the metalwork and electrodes in my spine.  What a shame then that my disability caused a third party such embarrassment.

I did make the best of it, in fact we made the best of it.  The house was a godsend for the mornings when I was unable to go out or the afternoons when I just needed to collapse with exhaustion.  We gave my parents some time off from grandparenting and did a trip to the zoo.  Children are so accepting and I made various little friends that day, as I was on their level in the chair.  I think that they just saw it as a buggy!!  We also managed to visit some exhibitions with our arty daughter – one of them contemporary and I must admit that I didn’t “get” all of the exhibits!  But it was great for Duncan to be able to push me to a fairly inaccessible 14th century church and then for me to be able to stand up and hobble round inside to view the pieces.  Our girl came away from the gallery in Holt inspired, with lots of encouragement from the gallery owner and with a packet of oil paints under her arm.  The table at home has swapped charcoal and watercolours for oils….

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Our girl’s painting of her grandparents’ bull terrier

Back home the hot weather continued on Sunday.  The house was still standing, the freezer somewhat emptier and the kitchen somewhat dirtier.  Our old dog, Sam, was delighted to see his mum, dad ……File 24-07-2016, 23 59 19and sister!

The five of us went for a trip to our local park together – believe me that this does not happen often these days.  I pushed the wheelchair initially and actually my walking was really helped by this.  Maybe a zimmer or triangular frame is in order!!  It was actually the EDS symptoms that drove me into the chair and I know that the boys were embarrassed, not for me, but for themselves!  They were far too busy catching imaginary Pokemon – I mean what is more embarrassing – running around after make believe Japanese creatures or pushing your mother in a chair?? Kids…..even if they are adults….nearly!

The chair has gone back and we now need to make a decision – although I think that it has already been made really.  I have the forms for the NHS service, but I am under no illusion that this will provide the lightweight, transportable type model that we have had.  Amazon, here I come…..

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Family selfie – in case the brothers were missing us!!
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At the beach – including Auntie Claire & her chair!

 

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??

 

 

Perspective & disability – what disability??

File 23-06-2016, 22 00 11It was my birthday at the weekend.  A day of very mixed emotions.  You are supposed to feel happy and enjoy the day aren’t you, but I couldn’t shift a low.  Maybe it was the realisation that I never dreamt on my 40th that 7 years later I would be experiencing even tougher difficulties.  Or maybe it was trying to push the thought to the back of my mind that I might have to live another couple of decades like this and “this” was not part of the game plan.

But then Sunday night as I nursed a dislocated shoulder and kneecap, I got to thinking about the events of the past 10 days and was forced to gain some perspective.  You may have seen the post that I blogged as a result.  My children still have a mother.  My gay child is still alive.  My child taking his mocks may not have done any revision….and he lives to see another exam!!  Mum had cooked us a lovely meal and my daughter had made me a birthday cake – I usually make them for other people.  Duncan has been away this last week on a school trip to Paris with fifty 11 year olds – yes, I did say 50!  He said himself that he is helping at our kids’ old primary school more now than he did when they were there.  It was a challenging week for us both, but in very different ways….

For Duncan, his biggest challenge was probably being in Paris and yet not a football game in sight.  I believe Parc Asterix had more twists and turns than any of the matches to date though!! ClELdAHWIAEFF1B Does it sound awful to say that I was looking forward to having some time alone?  Do you think that happened?  How quickly does 5 days fly by, particularly when one child goes down with a migraine?  For me I needed to prove to myself that I can still manage alone – or at least attempt to.  I know that I have spoken before about the loss of independence being something that I have really struggled with.  I had a meeting at the school and had to ask the head if he would be able to drop me home after.  I knew that he wouldn’t have a problem with it – in fact another teacher dropped me back, and I only live across the road – but I still have a problem with it!  Somehow the feeling of being unable to stand on my own two feet – literally at times – makes me feel deskilled.   I waited until I knew that my 17 year old son was home one morning to help me out of the shower before I had a scrub and hairwash, and I promised Duncan that I would not walk about the house without a phone in case I had another fall and/or faint.

I managed though.  Each morning my son and daughter got me up with tea and a lift up the bed, and I actually got up to see them off – a huge step forward since stopping the oxycontin as whilst on it I couldn’t open my eyes, let alone get out of bed by 8am!!  The weather hasn’t been on the side of us spoonies as the damp increases pain, both nerve and joint in my case, and also places havoc with dizzy spells,POTS & hypotension for us EDS zebras.  See this information sheet provided by the Ehlers Danlos support group (http://www.ehlers-danlos.org/about-eds/medical-information/autonomic-dysfunction/autonomic-dysfunction-sheet/),   An ordinary shopping trip with my mum, to choose my birthday present, saw me almost on the floor in the M&S fitting rooms with dizziness and the attendant probably thinking I was boozy but too polite to say!  I really could have done with that wheelchair that day….

I really missed Duncan and I do lose my confidence these days without him – I can’t believe that I am even admitting this as it is just not how I have ever been.  I suppose that no one else really sees me at my best and my worst in the same way, can cope with my sudden loss of mobility or sudden uncontrollable pain surges – the kids do come a close second, but I don’t want them to.  But I appreciated having an opportunity to try to be me again, although I am learning to accept the new me.  Something I have done, on the back of my last post and the lovely positive messages I received, is to call the Red Cross and arrange to hire a wheelchair for our holiday.  The next thing is to take advice from you guys about the best lightweight, portable wheelchair to purchase…please!

Meanwhile my oldest pal Karen saw this clip and thought of me!!  Disability, what disability??

As I strive for independence….

I had my first “weekend away” since I have had my spinal cord stimulator and it tied in exactly with the first anniversary of my stay on the St Thomas’ pain unit 2 week course.  We were actually on a trip to Exeter for the sixth form student to visit the university, but as it fell during the half term holiday it seemed a good excuse for a few days away.  Those of you who have been following for some time may remember my last weekend away trip to Bournemouth shortly before my stimulator trial.  It started with a bad fall in the car park on arrival and involved a mad, pain ridden 3 hour drive home at 2 am, with me literally climbing the roof of the car on our first nigh,t as I hadn’t taken the right pain meds away.

This time Duncan informed me, after we had been on the road for half an hour, that he would not be doing an emergency drive in the night from Exeter to Surrey!  Car journeys are not easy for me, like I imagine for many with pain & disability.  The confines of the car seat, the seat belt and the inability to change position is a nightmare with back pain & a spinal fusion.  My stimulator makes the pain more bearable, but as we are forbidden from driving with a low frequency “tingly” stimulator switched on, I am unable to drive myself.  Not forgetting the EDS.  The difficulties of turning a dodgy neck and shoulder dislocations hindering manoeuvring the steering wheel do nothing to make driving easier…or safe!  With a couple of stops along the way, a dead leg and some very costly motorway coffee, we made it and actually drove into glorious weather.Exeter

Whilst Duncan did the uni tour, I was planning a spot of sightseeing and retail therapy with the lovely girl.  One thing everyone tells us spoonies is that we need to pace ourselves and sometimes it can be pretty difficult to realise our own limitations.  I knew that a full day visiting the university and attending talks would be too much for me, but I thought that a few hours out with my daughter was just what the doctor ordered – excuse the pun!  She needed reassurance – she was worried that I might fall or faint and that she wouldn’t manage by herself.  Goes back to that evening in Bournemouth when I fell as she tried to hold me upright and she ended up on the ground with me.  So when we bought sandwiches for lunch and made our way to the green by Exeter cathedral, I was absolutely forbidden from joining the hoards of students lying on the green soaking up the sun!!

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Cathedral green

She was probably right – I doubt that she would have been able to get me up again.

Exeter is very hilly.  Isn’t it odd how sometimes the very act of maintaining our independence actually renders us more disabled?  In this case it was my desire to walk, which is very limited at the best of times, that left me in more pain and thus slowed our progress considerably as we tackled the hills of the city.  The frustration and stress involved in attempting to be “normal” just increases pain and is frankly exhausting.  Our progress back to the hotel was painful in so many ways and the guilt that I felt as my slight teenager held me up descending a steep hill was awful.

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Old Exeter

I have started to accept that whilst I really don’t want to make myself more disabled – if that makes sense – that if I were to be using a wheelchair for certain situations that I might actually feel less disabled: I wouldn’t be increasing my pain with every step, my walking wouldn’t be getting slower & slower, my family would not be worrying and I wouldn’t feel the guilt for their wellbeing.  In short, I might be able to enjoy a day out and actually have some more freedom.

There, I’ve said it – never thought I would, but hiring a chair might be on the cards for our week away next month.  Any suggestions gratefully received!

 

Referrals, P.O.T.S & Books

Another week has flown by and here we are in the UK at May bank holiday & half term.  Where is this year going?  I have had 2 medical appointments this week and each of these have led to even more.  The first was my monthly visit to the GP and I actually owned up to
the pain in my right hip that has got increasingly worse since it “popped” sideways – subluxed to those in the know – a couple of weeks ago.  Rather unfortunate as this is my “good” hip!!  The pain is completely different to the nerve pain and definitely EDS induced – it is deep in the front hip crease and at its worse on walking, to the point of literally taking my breathe away.  Or that could be because my hip gives way and I fall over!!
So a referral is in the post foimages (29)r an ultrasound and orthopaedic appointment, and poor old Geoff, my very patient physio, is going to receive a call to ask for help with not just the shoulders any more.  I have also spotted a tube of ibuprofen gel in my latest prescription bag….I wonder which dodgy body part I’m supposed to apply it to?  There isn’t enough to cover them all!!  The second appointment was with the neurologist to check me out for seizures.  I am delighted to report – and just slightly relieved – that I passed muster and don’t have epilepsy.  But – and no great surprises here – the faints, dizzy spells, palpitations etc are probably due to the collagen issues of EDS within my blood vessels combined with the chronic nerve pain…so another referral is winging its way to a cardiologist to put me on a tilting table to attempt to play havoc with my blood pressure!!  And investigate POTS – no not another foray into drugs, but postural orthostatic tachycardia syndrome!
Another couple of referrals and I will have stamps in my book for consultations with every body system.  Nearly a professional patient.  Something that did make me laugh is that the lovely doctor told me that I must lie down immediately when I feel the aura of a dizzy spell/faint gty_marijuana_plants_jt_120122_wblogcoming on – not sure how this will be received in the aisles of M&S.

We managed a trip to our book club this week – we meet in the pub, so Duncan isn’t going to miss this easily – and I have also been lucky to join The Book Club (TBC) on facebook.  For those of us who have “bad” days, reading can be a huge part of our lives from comfort to distraction to enjoyment.  539_10153914093796495_4475152326736141710_nThrough TBC I have joined a group called Netgalley, which is a forum for “professional readers” to read and review new books prior to official publication.  I’m not quite sure how I will get on with either of these sites – both ask for honest reviews to be published on goodreads and Amazon – but I thought that I would also have a go at posting some Book Chat on Painpals for my friends in the chronic community.  At the moment I have opened a new page at the top of the blog and my first review, which is for a new book on TBC, can now be found there.  Please stick with me on this, as I might find that I need to alter the theme of the blog if this doesn’t work out!  Guest reviews would be most welcome too.

We have a trip to Exeter later in the week for Olly to visit the university open day – Lucy and I plan a day shopping, but she is getting concerned in case I have a fall.  I did suggest borrowing a wheelchair – I know that I can’t walk very far and I have a feeling that Exeter is hilly – but I’m not sure that she fancies pushing her mum……to be continued!