Category Archives: Ehlers-Danlos Syndrome

Weekly roundup

Apologies if this post makes no sense, but I have a brain that feels like it’s been involved in a car accident and I think I’m starting with a hormone induced migraine :-/

The reason I am feeling like road kill is that I made an epic 600 mile journey to London on Friday to see one of my photographs in its very first print Exhibition.  From over 40,000 people I was chosen by the Photographic Alliance of Great Britain, along with 59 others from across the UK, as one of this year’s best amateur photographers and my work will be shown in a Gallery in the Capital for the next two weeks.  Holy Shit Bat Man!!!!!

My lovely friend John from my Camera Club offered to accompany me (for which I was hugely grateful, as the thought of going alone was daunting) and we caught the 8am train from Cumbria, getting into London at 11.10am.  We then caught the tube to Southbank, where we stopped off for lunch at a nice cafe, before making our way to the Gallery for the private opening ceremony which lasted til 4pm.  Getting back to the train station during rush hour on a Friday was an experience (!) but we made it and were soon winging our way back up north at the end of a brilliant, if ridiculously tiring and physically challenging, day.

At 9pm home was in sight when the train manager came over the tannoy to say that high winds were forcing him to apply a speed restriction to the train, and instead of travelling at 125mph we were having to crawl along at 50mph, causing a delay of over an hour.  My back already felt like it was going to snap in two and there was no way I could sit for another 90 minutes, so John had to move seats and I had to take my boots off and lie down as best I could across two tiny, hard chairs with my feet dangling in the aisle annoying everyone who wanted to get past!  We eventually got back home at 10.10pm, when I had to collect my dog from my parents’ then drive the 20 minutes home in lashing rain and howling winds.  I’ve never been so glad to get in my pjs and into bed in my entire life!  However, I DID IT, yayyy for me 😀  Of course, I will be suffering the consequences for days, if not weeks, but who cares right?!

On to other news.  I am currently driving a courtesy car as mine is in the body shop being re-sprayed after my little prang last month.  The courtesy car is geared though (stick shift), not automatic like mine, and my legs are protesting already!

My Dad was really poorly on Wednesday evening with one of his ‘dizzy/vomiting’ episodes.  The poor man projectile vomited for nearly 2 hours and during these attacks he literally goes off his legs and can’t walk.  Thank God we are seeing the Neurophysiologist on Monday who I am hoping can shed some light on what is going on.  We still don’t have a date for his back surgery though, so it’s looking unlikely it will happen before Xmas.  Big sigh.

Friday was my last big event in a year which has been brilliant, but stupidly over-busy, and I am looking forward to a much needed rest and the opportunity to recharge my very flat batteries.  Famous last words 😉

 

 

 

 

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Mr Fix-It

For the entire quarter of a century I’ve been ill people who know nothing about me or my diseases have been trying to fix me.  I know they mean well, I truly do, but why anyone with no medical qualifications thinks they know more about my health than I do baffles me and how they think they have the right to offer me unsolicited advice baffles me even more.  Would I tell a total stranger online, or some family member I never see from one year to the next, how to manage their finances, parent their kids or improve their marriage when I know nothing about what’s really going on, the issues are deeply personal and they didn’t ask for my advice in the first place?  No.  Yet everyone and his dog thinks they can tell me how to manage my health.  It irritates the life out of me.  Scrap that, I feel livid just thinking about the decades of well-meaning, but ultimately intrusive and insulting, comments I’ve had to endure.

The conversations with people I actually know usually start something like this:
“Hi Jak, how are you today?”
“Oh, fair to middling” (which is a Cumbrian term for ‘crap’ – I refuse to say fine when I am clearly not, and never will be, fine).
“Oh, that’s  a shame.  What’s up?”
I am not going to list the dozen symptoms that are currently troubling me the most, or go into detail about my bowel habits, menopause or the fact I have itchy hives on my arse which are personal and no-one’s fucking business but mine, so I usually reply “Just having a pain flare.”
“Have you not tried some painkillers?”
Oh my God why I haven’t I thought of that!  Said no chronic pain sufferer ever.  Seriously, I have no clue what I’m supposed to say to that.  I’ve tried various responses, which all lead further down the path of well-meaning, but ultimately insulting, advice and only serve to wind me up like a clock.  For example:
“I’m allergic.”
“Really?!   Surely there’s something you can take?”
“No.”
“Well what about things like Gabapentin/Amitriptyline/insert-any-non-analgestic-drug-of-your-choice-here?  My friend with ME is on that and it’s really helpful.”
It’s at this stage in the intrusive conversation when I’m hormonal, have barely slept for 10 days and am so fed up I could cry that I want to punch them really hard on the nose.

Or I get the whole “have you thought about acupuncture/a gluten free diet/prayer/insert-the-thing-which-cured-you-or-your-friend-here?” and then have to justify why I have, or haven’t.  Like it’s anyone’s fucking business.  Do I ask you if you’ve tried debt counselling or been on Mum’s Net for advice on controlling your unruly teenager?  No I do not, because your private life is none of my Goddamn business and you are a grown adult capable of running your own life.

Then, at the end of the conversation when I’ve had to evade all their well-meaning but unasked for advice the other person gets a bit narky with me, like I’m deliberately letting myself suffer when there is clearly help out there if only I’d try it.  When they’ve had over two dozen potentially life threatening anaphylactic reactions to everything from herbal tea to B12 supplements and have PTSD at the mere thought of trying a new fruit let alone a powerful drug like Gabapentin, then they can tell me what I should and shouldn’t be trying.  Until then, they  need to shut the hell up.

If I want someone’s advice, I will ask for it.  Until then, I am allowed to say I’m not well without you trying to fix me.

The best response is the one my lovely friend John at Camera Club uses and it’s this:
“Hi Jak, how are you today?”
“Oh, fair to middling”
“I’m sorry to hear that.  I hope you’re back to your normal again soon.  Let me know if there’s anything I can do to help” (and he actually means that, unlike most people who say it and pray you never ask for help).
“Thanks, me too.”  And I walk away from the conversation knowing he both cares and gets my situation.  Note he doesn’t say I hope you feel better soon, because that’s the worst thing you can say to someone who is chronically ill with no hope of ever being well.

I’m fed up of people trying to fix me.  I don’t care that it’s well-meaning.  It’s intrusive and patronizing.  If I ever want someone’s advice on my health I will ask for it, but it’s unlikely I will be asking some stranger off the internet or some random family member.  Call me weird, but it’s much more likely I will be asking a medically qualified Consultant who specializes in at least one of my rare and complex diseases!

Weekly roundup

Everything I do has to be paid for and, as expected, last Sunday’s day in Lancashire took its toll and I spent Tuesday crippled by a banging, sickening migraine which lasted til Thursday.  Yay.  To add insult to injury my parents haven’t even got me a ‘well done’ card for passing my distinction let alone a bunch of flowers which, if I’m honest, is kinda hurtful especially when they did both for my niece recently when she passed her police exam.  It’s almost as if, because I’m ill, nothing I achieve means anything and isn’t real despite the fact that, because I’m ill, it’s twice the achievement it would be if I were healthy!  At least some of my Camera  Club buddies are happy for me and took me out for a little celebratory lunch on Friday.

Friday night I slept for 8 whole hours and only woke once.  No big deal you might think, except the fact it’s virtually unheard of in my house.  Before I got ME I never had trouble sleeping, but once of the first symptoms of the disease for me was insomnia and I have struggled to sleep for nearly a quarter of a century.  When I started my low histamine diet it definitely helped my sleep situation, but then along came peri-menopause and it all turned to crap again.  And just recently my awful back pain has made the situation ten times worse and sleeping in my house is like catching fog.

I am bone weary and at the moment can barely keep my eyes open past 9pm.  However, no matter how shattered I am I still only sleep for about 5 hours and during that time I’m awake at least 2 or 3 times, often having to get up to pee in the early hours.  Friday night I was particularly shattered and absolutely desperate for sleep, but as I lay in bed watching TV with my back killing me I knew that yet again it wasn’t going to happen.  In desperation I tried every trick I knew to get my back to settle down – having a warm bath, slathering myself with Ibuprofen gel, putting on my TENS machine even though you aren’t supposed to sleep with one on, and wearing both my SI belt and my back brace, despite the fact it squishes my intestines.  I was probably the most comfortable I’d been in ages and, amazingly, actually nodded off watching tv at about 8.30pm, something I hardly ever do.  I was startled awake at 11.45pm by the telly blaring, so got up for a wee but went straight back to sleep and the next thing I knew it was 5.30am.  Whoo-hooo!!   I mentally felt like a different person Saturday morning.  Last night was business as usual though and this morning I feel like I’ve been dragged through a  hedge backwards :-/

I woke up Saturday morning with my wrist swollen, red and itching like a bitch.  No clue why and I’m just  putting it down to one of those mast cell things.  My arse is covered in hives and has been for a month now so my histamine is obviously pretty high.

Yesterday was the 1st of December, so Bertie opened door number one on his doggie advent calendar and ate the carob chocolate inside and I put my Christmas tree up so the lounge is now all sparkly with lights.  I find Xmas difficult being on my own and sick, but I still make the effort to put up decorations even though I never have any visitors.  *I* see them and that’s all that matters.

Today I’m going in to town to put my parents’ decorations and tree up even though it’s the last thing on earth I want to be doing.

This week is another big week.  I am off to London on Friday to the Gallery opening where my photograph is being exhibited – I am sooo excited!!!  I’ll tell you all about it in next weekend’s roundup.

Weekly roundup

I did it!!!!!  I gained my second photographic distinction and can now place the letters DPAGB after my name 🙂  It was a stupidly long day – I set off from home at 6.50am and got back at 8.50pm – but I made it and am both relieved and chuffed to little meatballs.  The fifteen images I used for my award can be found here.

As you know, the day before my back was killing me and my neck was so painful I could barely turn my head.  However, I woke on the morning of the distinction and the neck pain had literally vanished overnight despite the fact I only managed four hours sleep.  It’s not the first time I’ve gone to bed in agony and woke to no pain at all and it totally baffles me as to what on earth is going on.  My hip and SI pain were also quite good on the day (though they’re crap again this morning), so I only really had to cope with the mid back pain which was a good job because after 7 hours of sitting on hard metal chairs my back felt like it was ready to snap in two.  I also struggle to be upright at all for any length of time, so to have to sit up for an entire day was a huge challenge and a couple of times when it got hot in the auditorium I felt like I was going to pass out – I’m so grateful that didn’t happen because landing with a bang on the floor would have been mortifying in front of hundreds of people 😉

I’ve set myself too many challenges in respect of my photography this year – not only have I been working towards this distinction I’ve also been working towards an international distinction and am just about to submit my portfolio for that.  Then there’s been various important nation-wide competitions, judging my first International photography Salon, doing my first talk at a Camera Club and of course still doing my usual Camera Club competitions.  It’s too much and my health simply can’t stand up to that level of stress and activity, so I’m hoping to just chill until the New Year and rest up.

Of course, resting assumes my Dad doesn’t go in for his spinal surgery about which we have heard nothing.  The Surgeon said he was hoping to do the op before Xmas but before that he needed a nerve conduction test and another MRI scan about which we have heard diddly shit.  With less than 4 weeks to the holidays I really can’t see the operation happening and as a family we are pig sick because my Dad is suffering massively and can barely walk.  He’s had about as much as he can take bless his heart.

Well, I must get up and dressed despite being completely knackered.  I can’t find anyone to walk Bertie on Mondays and Fridays so no matter how I feel I have to get my thermals on and take him out.  At least it’s dry, despite the fact it’s -2C outside, and I’m sure the fresh air will do me good – that’s what I tell myself anyway 😉

Back Pain

My back has been the bain of my life.  When I was 11 I fell through a hole in an upstairs floor while playing in an old barn and that was the beginning of a lifelong journey with back pain.

Over the next 5 years I had X-rays which showed I had mild scoliosis (ie curvature in the spine) but couldn’t find any reason for my pain.  I also had physio (which made the pain ten times worse which I was told wasn’t possible) before my local hospital decided I was an attention seeking teenager who needed psychiatric help.  I disagreed.  At the age of 16 I sat in my GPs Surgery and said I wasn’t moving until I’d had a second opinion.  I was given an appointment at the Freeman Hospital in Newcastle who had one of the first CT scanners in the country and it was discovered I had spinal stenosis (narrowing of a vertebrae in my spine which was pinching nerves and blood vessels) and I needed urgent laminectomy surgery.  It’s rare for anyone to be born with stenosis and I now know this could be related to my hEDS.  The surgery didn’t cure my back pain, though, and I have suffered ever since.

I also have hyper-lordosis (commonly known as swayback) which is an exaggerated inward curve to my mid spine which causes my posture to be completely off.  It has caused me no end of pain my entire adult life.  The muscles and ligaments which hold my spine together are already weak due to my hEDS, so to have an abnormal load placed on my mid spine means that they can’t cope with the pressure and being upright for any length of time is tortuous.

Everything went to hell on hand cart when I turned 40 and my hEDS suddenly went berserk.  My back pain only used to be apparent when I was upright, so lying down and sleeping were fine.  Not any more.  My back pain is now constant and nothing I do alleviates it.

This week has been one of my worst ever and I have no idea why.  Ten days ago I drove my Dad to hospital in Newcastle and although my back was achy and sore as it always is I was fine.  The next day, however, the second I woke up I knew something was different and I could barely move.  Within a couple of hours my period started and I didn’t know whether it was the driving that had done me in or my hormones, which have been causing absolute havoc with my ligaments this year.  However, I thought after a few days rest I’d be fine.  I was wrong.

The pain was originally around my SI joint.
I have this a lot and it causes acute aching over the joint itself plus stinging nerve pain across the tops of my hips, in my buttocks and down my legs.  My leg pain this week has been dreadful and I have had shooting pains right down to my toes.  Lovely.  There’s nothing much I can do for this type of pain, other than lying in a hot bath, regularly slathering on Ibuprofen gel, using my hot water bottle and my trusty TENS machine.  I also always use an SI support belt when I walk anywhere otherwise I’m crippled with pain afterwards.

After a couple of days the SI pain eased off a little but the pain migrated into my mid spine, just below my rib cage.
Again this caused stinging nerve pain right across my mid back and sleeping was out of the question because every time I lay on my side it got worse.  Much worse.  Treatment consisted of hot baths, pain relieving gel, heat pads, my TENS machine and my back support (which is OK when I’m standing but squishes my ribs and intestines when I’m sitting).  None of it helped.

Three days ago the pain from my mid spine slackened off a tiny bit, but I seemed to have a slightly sore point on my neck.  Weird, as I’d done nothing but rest for days and within 24 hours it had largely gone.
However, the next day pain seemed to be creeping in to my upper spine and by the time I went to bed that night it was really sore.
I woke the next morning with all the muscles in my neck in spasm and pain across my right shoulder blade, up the right side of my neck and into my head.  FFS!  It’s in a place I can’t reach either to put on gel or my TENS machine, so I’m just having to put up with it.  I’m struggling to use my right arm and can’t turn my neck to the left or look down at all.

This morning, as if I haven’t suffered enough, all the pain has decided to come at once so I have SI pain, leg pain, mid back pain, upper back pain and neck pain.  I could howl, because tomorrow is my Photographic Distinction that I’ve worked towards for months and I’m travelling over 100 miles for my judging then having to spend the whole day sat on a  hard, plastic chair looking up at a large screen.  It’s going to be complete torture.

I have absolutely no idea what’s set all this off and why, after resting for 10 days, it’s getting no better.  I am pig sick and there have been days this week when I’ve wondered how much longer I can live like this.  40 years of pain are enough for anyone, not withstanding all the other symptoms I have from my diseases.  The fact I can’t sleep because I can’t get comfy is the final straw and I am exhausted from it all.

I keep telling myself “this too shall pass” but honestly it doesn’t help much.  How I wish I could take pain killers!  Mind you, there are days I’d be tempted to swallow the entire bottle so maybe it’s no bad thing I can’t take them.  I’d kill to get drunk but 😉

There won’t be a weekly roundup tomorrow as I’m having to set off at 6.50am but if I’m up to it I’ll do one on Monday to let you know if I passed or failed my distinction.  Wish me luck!

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉

 

 

 

Weekly roundup

I seriously need to be resting now.  I’m exhausted and unwell.  But my life is so busy it’s not happening and I have no idea what the consequences are going to be.

There are only six Mondays to go til Christmas and I have not given it a second’s thought.  I haven’t had the time or energy, but I’d better start getting my backside in gear or I’m scuppered.

Following on from my car accident, on Monday I had to take my car in to the local body shop for an estimate and they told me it could be 3 weeks before they can repair it.  FFS.

I went to take Bertie out on my scooter on Tuesday…………only to discover that I had a totally flat back tyre 😦  So I had to ask my neighbour to help me jack the scooter up on bricks and get the tyre off so that I could take it into town to be repaired.  More sodding expense.

I told you in my last post about the lady at my Club who had a pop at me on Wednesday night.  I’d had a really enjoyable evening until then but went home feeling upset and angry.  She seems determined to spoil my enjoyment of the Club and I’m not sure what to do about the little bitch.

Thursday I discovered a wealthy, influential landowner is trying to persuade my local authority to build a dual carriageway of one of the busiest rounds in the country on the edge of my little hamlet.  It strikes fear in my heart and I’ve been busy writing to my Parish Council and my local Councillor to find out what stage the proposal is at and if there’s genuinely any chance it could happen.  I live here because I’m in bed for 17 hours a day and my poorly brain needs peace and quiet – I’d be forced to sell up if this road went ahead and I LOVE where I live 😦

We finally heard from the Hospital about my Dad’s spinal surgery, so on Tuesday I’ll be taking him on a 180 mile journey for a pre-op assessment.  Please God that means his surgery is imminent.

Yesterday I did a paid photography job.  I don’t usually agree to do paid work because it’s way too stressful – I have to be well on the day and there’s huge pressure to make a great job – but I’m so skint with Christmas looming and my car accident that I had no choice.  Thankfully it went well and I hope they’re happy with the photos which are Christmas presents for their parents!  My brain today, however, feels like it’s been fried, my throat is killing me and I feel very fluey and MEish :-/

This coming week is absolutely and utterly nuts and if I feel ill now I’m going to be in a coma by Friday.

Well, this is a cheerful post isn’t it?!  I’m not miserable in any way, just concerned that I’m doing too much and feeling more and more unwell.  After this week is out of the way I MUST make it a priority to rest, though I’ve been saying that for over a month now and life has a habit of putting the kibosh on my plans!