Tag Archives: MCAD

Normal test results

I’m the healthiest sick person you’ll ever meet.  Despite having Spinal Stenosis, MCAD and EDS from birth, M.E., Histamine Intolerance, Endometriosis and Adenomyosis 98% of all my test results have come back “normal”, at least according to my Doctors.  It will not surprise you that my response to that is “knickers!”.

When I was 11 I was climbing in some outbuildings and fell from the first floor onto the bonnet of a car, after which I developed back pain.  For the next 5 years I went backwards and forwards to the hospital who could find no reason for my symptoms.  X-ray results were “normal” and eventually I was told I was “attention seeking” and needed to see a shrink.  I refused and demanded a second opinion from an Orthopaed at a decent hospital 90 miles away (I was bolshy even at 16 😉 ).  Within 48 hours of being admitted they discovered I had been born with rare congenital spinal stenosis and urgently needed a laminectomy.  The fall wasn’t the cause of my back issue but had just aggravated a pre-existing condition.

This was my first experience that Doctors aren’t Gods and sometimes get it wrong and over the coming years I was to discover that they get it wrong more often than any of us would like.

It’s only in the past 5 years or so that NHS patients in the UK have been given access to their test results.  Historically, GPs would take loads of blood, not even tell you what you were being tested for and the results were sent back to the GP who only ever rang you if something abnormal was discovered.  But a GP’s idea of “normal” results and my idea of “normal” results seem to differ.

As I’ve discussed recently here on my blog, at the tail end of last year I started having symptoms of anaemia so asked my GP to check my iron levels.  They came back 1 point above the very bottom rung of “normal” (normal range 17-160 according to my lab sheet, and my result was 18), so my GP considered that fine.  Only of course it wasn’t fine because I was having symptoms.  I took it upon myself to start some supplements and within a week the pallor, exhaustion and daily dizziness I’d had for months vanished.  But if hadn’t gone to the surgery to request a print-out of my results and seen that my levels were low my GP would have just said everything was “normal”, I wouldn’t have tried the supplements and would have continued to feel like death warmed up.

When I saw Dr Seneviratne for my histamine/creatinine test it was high but within the “normal” range (normal is 34-177 and mine was 140).  However I’d been on a low histamine diet for 4 months at that stage, which one would hope would lower my histamine load and therefore skew the result, plus was symptomatic (at the time of testing my bum was covered in hives).  So thankfully Dr S still diagnosed me with “probable” MCAD because my history fairly conclusively suggested it.  But not all Doctors think like that – they see “normal” test results and rely on those, even when all the evidence is pointing towards there being a problem.

I’ve had severe gynae pain since the day I started my periods and over the years have had various tests and scans all of which were “normal”.  Well, apart from the fact my first ovarian scan showed a 2cm cyst which I was told was cyclical (they know this how?!) and 12 years later my second ovarian scan showed a 5cm cyst.  Turns out I have polysystic ovaries and due to my endo some were blood filled and when they burst caused excruciating pain and adhesions :-/  My first pelvic MRI at my local hospital showed absolutely nothing untoward, yet an MRI at a specialist endo centre six months later showed extensive endometriosis which even I could see on the scan!  So it turned out that the excruciating pain I’d lived with for the better part of 40 years wasn’t “normal” after all and I needed an urgent hysterectomy.

Anyone with Hypermobile Ehlers-Danlos Syndrome will tell you how painful and disabling the condition can be, yet nothing shows up on tests.  Genes and skin are normal, as are scans and x-rays.  Before I suspected hEDS I was told by medical staff that I was just “sensitive to pain” which made me feel like a total loser – little did they know I lived with pain most days that would have a healthy person reaching for the Vicodin and I did it without so much as a murmur, so far from being sensitive to pain the opposite was, in fact, true.

Here’s the thing I wish Doctors took more on board – if a person is having symptoms there is a problem, even if test results look “normal”.  I wish they’d listen more to what we’re telling them, take a full history and trust that we know our bodies better than they do.  What is “normal” for a 6ft 4″, 16 stone, male, thirtysomething rugby player might not be “normal” for a 5Ft, 7stone, teenage girl.

Back pain at the age of 11 is not “normal”.  Gynae pain so severe you’re curled up in the foetal position every month is not “normal”.  Fainting is not “normal”.  Widespread pain is not “normal”.  Seizures are not “normal”.  Fatigue which puts you in bed by 4pm every day is not “normal”.  Collapsing after every meal is not “normal”.  Flushing is not “normal”.  Daily nausea is not “normal”.   I don’t care that all my tests indicated nothing was  wrong, because something clearly was and it wasn’t something trivial to cause that much havoc.

My cynicism towards the medical profession is now legendary – that’s what comes of being fobbed off or 40 years that all is well.  In the end, I had to guess what my diseases were and inform my Doctors, who then did the relevant tests which, surprise!, came back not normal in any way 😉  I trusted my instincts, even though when I was younger I didn’t have enough confidence to challenge my Doctors.  I know there are some people who are hyper-vigilant and obsessive and who think they have some dreaded disease from every little ache, pain and niggle (I’ve met some of them online!) but I know my personality and know that I’m not a drama queen or someone who focuses abnormally on my body (again, the opposite is true and I actually ignore symptoms when I really shouldn’t!).

These days I’ve gained a fair bit of knowledge about my body and I know what’s normal for me and what’s not.  If I’m not happy with a consultation I’ll research the best doctor to see and request a referral even if it’s hundreds of miles away (which is my legal right).  I request a copy of my test results and will push for treatment or further testing if I think it’s needed.  After all, I’m the one who has to live in my body and suffer my symptoms, not my Doctor.

 

Weekly roundup

This week was the first of my stay-cation but I’ve been so busy I think I’m going to need another holiday to get over my holiday 😉  Back pain aside, however, it’s been a fabulous few days and I’ve enjoyed every second.

On Monday a friend and I went to photograph wild Red Squirrels.   They are native to Britain but in the late 1800s North American Grey Squirrels were let loose in the UK (for reasons unknown) and over the years they have decimated the native Red Squirrel population, not least because greys carry squirrel pox to which they are immune but the reds are not.  We have one of the few remaining red populations here in Cumbria but they are very timid and shy animals and very difficult to capture on film.  But I managed it and had an enchanting hour sat by a tiny waterfall in woodland watching 3 reds foraging for food:

Thursday I had a lovely day with my best mate, having lunch out to celebrate her birthday.  I had taken a shot of a local stone circle and, having seen that on my Facebook page, my friend had asked for it to be printed off for her birthday.  I’m a shit landscape photographer so was extremely flattered that she’d liked it enough to put it on her wall.  I went the extra mile and had a custom frame made and even I admit it turned out nice.

Thursday night didn’t quite go to plan as I discussed in my last blog post, however I still made it out on Friday night to my Camera Club’s annual awards dinner.  Food was fab, company was great and I walked off with 3 trophies for winning the Summer Challenge, the Intermediate Print League and the Intermediate Digital Image League – there was much ribbing about me needing a wheelbarrow to take my haul home and an extension built on my house to put them in 😉  As a bit of fun we had to produce an image we’d taken with a caption and I also won the caption competition:

Saturday I had booked to go on a short Portrait photography workshop.  It was a stupid thing to do considering I’d been out the night before and knew I’d be absolutely knackered but there was a reason to the madness – I needed a distraction from the fact that 300 miles away 6 judges were looking at a panel of 10 of my photographs and assessing me for my first photographic distinction!  So off I toddled to the workshop along with 5 other people from my camera club.  I have to admit it wasn’t that great and made worse by being so tired and still having awful back pain, but having said all that it was interesting to be in a proper photography studio with expensive lights and stuff.  I managed to get a nice image of the model too, though it still needs some work:

After the workshop finished I tentatively checked my phone and saw I’d received a text from someone I know who was at the Distinction Panel – I held my breath as I opened it.  Hurrahhh I had passed and can now put the letters CPAGB after my name! 🙂

So, as weeks go this has been one of my best in a long time.  I’ve way over-done it and will suffer the consequences over the coming days but I don’t care!  I’ve spent time with fabulous people doing the things I love and life doesn’t get much better than that.

Bitterness

Being chronically ill isn’t how it’s portrayed on the telly.  On the tv people get sick, lie on the couch looking fabulous (if a bit pale and wan) while their friends and family rally round bringing blankets and chicken soup, enabling them to make a complete recovery usually with the help of some miraculous new medical intervention.  There is no unwashed hair, food stained pyjamas, stench of Deep Heat, denial of their symptoms by the medical profession and their nearest and dearest don’t bugger off into the sunset to carry on their lives without them.

For me, and many of my severe and long-term ill friends, life can be a lonely, isolated, frustrating and boring existence.  Friends who kept in touch in the first couple of years have long since drifted away.  The tension of still being reliant on parents when you’re in your thirties or even forties, or having a spouse turn into a caregiver, tests even the most rock-solid of relationships.  Children grow up with a basically absentee parent.  Careers we fought so hard for vanish forever.  Finances are tight.  Holidays by the beach are a long forgotten memory as we live our lives imprisoned by the four walls of our home, each day stretching before us in pain-filled, monotonous solitude.

There is much grief in living with chronic illness.  The mourning of a life we thought would be ours.  The letting go of cherished hopes and dreams.  The realization that this is now our future and all hope of normality is gone.

I’d already had a tough child-hood.  I’d already survived years of bullying, an abusive husband and being ostracized by my paternal family.  I had just started to gain my emotional equilibrium and find happiness when M.E. hit.  It felt desperately unfair.

I clung on to the hope that I’d be better in a year or two, but as I reached the 5 year mark, then the 10 year mark, hope left the building.  15 years down the line I’d gained my EDS diagnosis.  20 years down the line and MCAD, Endometriosis, Adenomyosis and an Essential Tremor had been added to the mix.

I’m not sure whether time makes it easier, or harder, to fight off bitterness.  There are many days I wake with joy in my heart and gratitude for my life, but still those days I wake feeling angry and hard done by.  Having been given all these issues to deal with couldn’t the Universe have provided me with a little compensation?  A loving husband, my dream home, or a lottery win maybe?  Something, anything, to make up for all I’ve lost?

There are days I struggle to fight my anger. My experience has given me hard edges and made me emotionally difficult to reach.  Yes it’s provided me with other attributes – empathy and a kind heart I hope – but it’s taken far more than it’s given.

I try not to be hard on myself on those days bitterness engulfs me.  I tell myself it’s normal to feel that way now and again, just so long as it’s not all I feel.  There are no Manuals to tell us how to live a joyful and fulfilled life when so much has been taken away.  I remind myself there are people far worse off than me in the world.  That I do, in fact, have much to be thankful for.  Some days that helps.  And other days it doesn’t.

I don’t want this post to sound maudlin or depressing – I’m just being honest about the reality of living a restricted life.  We’re not Saints, we’re just human beings doing the best we can under exceptional circumstances.  It’s normal to feel frustrated, angry and bitter – the hard part is to not let that consume us.

Weekly roundup

I do not have pretty legs.  Along with the ‘elephant knuckles’ on my hands I seem to have ‘elephant knees’, and in addition I’m bow legged due to my flat feet and consequently rolling ankles.  It’s my Camera Club’s annual dinner and awards presentation this Friday and one thing’s for sure, I won’t be wearing a skirt which is a shame because, although I’m not the most girlie girl in the world, I am female and it would be nice now and again to wear something pretty.  The situation has not been helped by all the bruises I managed to acquire while helping my neighbour last week.  I’ve no clue how I got them, they just appeared, but they sure aint ladylike!  Is it just me who thinks the bruises on my right knee have made a face?  And the ‘face’ on my left knee looks like it’s winking LOL!

For about 5 days this week I had bags of energy.  At the time I had no idea why but was grateful and made the most of it 🙂  I got all sorts done, then woke up Tuesday morning to discover my period had arrived.  I was only on day 19 so it was completely unexpected, bearing in mind my cycle last month was 32 days.  Due to my endometriosis I usually have plenty of warning when my period is on the way in the form of back and stomach pain, but this month nada.  I can’t believe some women go through their whole lives like that, just having periods and it’s no big deal.  I’ve never had a pain-less period in my entire life and it was wonderful but weird!  I’m now putting my preceding energy spurt down to hugely surging hormones.

The few days since my period has ended have not been as great.  I appear to be having post-period tension and am like a weepy bear with a sore head.  My dwindling hormones also give rise to spotting for days on end and my back and reflux are rubbish.  My proprioception is also way off and I’ve spent three days banging into the furniture, dropping every item I pick up and spilling everything from my morning cuppa to the liquid which goes in my washing machine draw.  It’s driving me nuts!

To add insult to injury my cold-induced cough is still lingering.  Three weeks of hacking up phlegm when you’re already ill is pants and I just wish it would do one.

Wednesday was my last Camera Club of the season and we won’t meet again until September.  I’ll really miss it.  It’s the only time I ever get to see people and I enjoy being sociable as much as I enjoy the photography.  However, at the same time I do find the 2 hours I spend there exhausting.  Thursdays are always a right-off and I’m still suffering the consequences on Friday.  Bertie will be happy though.  He’s usually fed at 4.30pm then sleeps til 6am the next morning – having to go out in the cold at 6pm to be dropped off at his Nannie and Granda’s and not getting back home til 10pm makes him tired and grumpy 😉

I started a 2 week stay-cation on Friday.  As regular readers will know, I decided that I deserve holidays just like everyone else and although I can’t afford, and am not well enough, to go away that doesn’t mean I can’t abandon my parents and my home for a fortnight three times a year.  I’ve made sure my Mum and Dad don’t need anything doing, I’ve cooked and frozen enough meals to see me through and caught up with my laundry.  Apart from still having to take Bertie out, I’m spending my days doing what I want and not thinking about anyone else for a change.  Bliss 🙂

Today is Easter Sunday.  Like most heathens the religious significance passes me by, but I am going out with my parents for lunch which I’m both looking forward to (getting out of the house and not having to cook) and dreading (Dad being scatty and Mum being drunk).  Whatever you’re all up to I hope you have a lovely day 🙂

Weekend roundup

And what a weekend it’s been.  I’m exhausted but with a huge sense of achievement, so that’s OK then 🙂

Sat and Sun I attended my first International Photography Salon.  Once a year it’s held in Cumbria and our Camera Club are amongst the hosts, so I was one of the volunteers who helped run the event.  I had to be up at 6am both mornings, dressed, fed and take Bertie to my parents for 7.30am.  I was then collected by some friends in their car and we travelled for an hour to the venue.  By the time we arrived I was knackered and it wasn’t even 9am 😉  The day then finished at 5pm, we travelled the hour home, I had to collect Bertie, drive another 20 minutes back to my house, then start making my dinner.  Needless to say I ate it half propped up in bed as I was so shattered by that stage, and in so much pain, I couldn’t even sit upright!

My job both days involved being on the computer, checking the image being judged matched that shown on screen.  Trust me when I say 6 hours of that each day was mind boggling!  Thankfully I had my wing-man John to help out – I tended to the do the morning shift when I am at my most mentally alert and he did the late afternoon shift when I am usually in bed because I have conked!

The weekend was made even harder by the fact I am still not over my cold.  Ten days now of a runny hose, hacking cough and sore throat, on top of which having a virus has caused my mast cells to ramp up a gear or three and I have a large outbreak of hives on my backside.  Lovely.  However, I coped really well all things considered and am actually rather proud of myself 🙂

As I was only in the admin team and not actually judging, I was allowed to enter some images of my own into the Salon.  I didn’t hold out any hope, as this was my first International Exhibition and there were 15,000 images judged from all over the world.  *However*, I was delighted to discover yesterday that 3 of my images were accepted into the Exhibition and not only that but the image below received an Honourable Mention in the Open Monochrome (ie black & white) section.  OM-flippin-G!!!

An Honourable Mention means that the image scored maximum points but wasn’t selected for a medal.  Still chuffed to bits that this image made the final 20 out of 1,400 images but, and the chap in the photo who is our village grass cutter, will be tickled pink 🙂

I don’t have any results from today, though am not expecting to get anywhere with my colour images.  Mind you, I didn’t expect to get anywhere with my Black & White image either so who knows lol!

Needless to say it will probably now take me several days of bedrest to get over my humongous weekend, but I’m still glad I was able to do it.  I’m sure at events like this where I appear absolutely and utterly ‘normal’ my Camera Club mates must think I exaggerate my illnesses.  Of course, they didn’t see the TENS machine on my back, the brace on my leg, the acupressure sickness bands on my wrists, my neck wrap or my support stockings as they were all hidden under my clothes.  They weren’t with me for my slight mast cell reaction after breakfast today or in the early hours when I couldn’t sleep for hip and back pain.  They were also unaware of the several times over the weekend I felt like I was going to faint, or puke, or both and the fact that at one stage both my arms went completely numb.  And in some ways I’m glad they’re not aware, because that means for just a few hours I can live like a ‘normal’ person and do things a ‘normal’ person does.  I wish, however, that my ‘normal’ friends could endure the payback for me this week because I know it’s going to SUCK!

I’m back!

OMG that was the longest 10 days of my life.  I have missed my laptop while it was away being fixed like you wouldn’t believe.  I think it’s time to officially admit I’m an internet addict 😉  The worst part was not being able to do my photography – I have been so bored at nights with no Photoshop I’ve been climbing the walls!   I’m not one of these people who can sit for hours watching the telly and my brain is too poorly to read for more than 15-20 minutes on any one day (if at all) so I have literally lain in bed twiddling my thumbs.

After waiting 6 long weeks to see my GP I finally had my appointment last Wednesday.  Waste of bloody time that was.  Even though my ferritin level is 1 point below the very lowest limit, and I’ve been dizzy every day for months, white as a sheet, exhausted and fainting when I menstruate she was not the slightest bit concerned.  “You don’t have anaemia” she concluded and that was that!  Not even the offer of a supplement despite my symptoms.  Thank God I’ve taken it upon myself to take Spatone iron water and try my best to up the intake of iron from my foods.  Neither was she bothered about my poor kidney function which is 73 when for my age it should be 93!  “It’s just a snapshot test, you were probably dehydrated” was her conclusion “we don’t bother unless it’s under 60”.  Hmmm, not even if you have mast cell disease which can affect your kidneys?!  I pressed the ‘pre-existing conditions’ angle so she agreed to re-test and check whether it was still low or not.  I get so incredibly tired of being my own advocate and fighting to get my health issues taken seriously.

One of the main reasons for seeing my GP is that I’ve been having dreadful stomach/gut pain for a year now so she’s booked me in for another endoscopy, which I swore I wouldn’t have done again as I can’t have sedation (allergic to the sedation drugs) and trust me when I say having an endoscopy when you’re wide awake is enough to give a person PTSD.  However, I do need to know what’s going on so will just have to grit my teeth and get on with it.  I did write my GP a letter the day after my appointment though to remind her to tell the Hospital that my throat swelled following my last endoscopy (probably due to my dermographism) and that this time I want my biopsies to be stained for mast cells.  I know that a special stain has to be used but as I didn’t have access to the internet to look this up I used Dr Afrin’s book which mentioned CD117, so that’s the information I put in the letter (don’t know if this is correct though!).  She also did a Coeliac blood test (which will be negative, as it has been the other 20 bloody times GPs have tested for it!) and I had to take in a poo sample to check for blood and inflammation (I’ve had this done before too and last time all was fine).  So now it’s just a waiting game for my torture endoscopy appointment.

While in the car park at the health centre someone bumped my car.  I was in it at the time, so got out to inspect the damage………and the person who did it simply drove off!!!!  I wasn’t quick enough to take down his licence plate but did spend an hour in the cop shop waiting to report it to the police as it’s taken the paint off my rear passenger door.  My statement took all of 3 minutes, so why did I have to wait an hour for a policewoman to take it, being as I was the only person there?!  No chance of catching the culprit as there is was no CCTV in operation and I’m not claming on my car insurance to repair the scratches as then my premium will go sky high :-/

I went to visit my parents last Friday not knowing my Dad was starting with a cold, which he duly passed on to me.  He sniffled for 48 hours then was fine but I went down with a raging lergie, including sore throat, chills, nose dripping like a tap, thumping headache and a racking phlemy cough.  Cheers for that Pops.  Monday and Tuesday I could barely get out of bed and 5 days on I still feel as rough as a badger’s nadgers.  I do have a very husky voice though and could make a mint on a sex chat line 😉

Last night was the last print competition of the season at my Camera Club and come hell or high water I was determined to attend.  So armed with cough sweets and a thermos filled with a hot honey and lemon drink (I didn’t want to have a coughing fit during the judging) off I toddled.  I’m glad I put my poor aching body and head through the effort as I got first place with my photo called ‘Mongolian Man’ and the judge’s comment was “this is one of the best portrait photos I’ve ever seen in a Camera Club competition.”  I know you shouldn’t blow your own trumpet but I was proper chuffed.

I also got joint 2nd place with myself with my other two entries, so I had a cracking night.  As this was the last print competition of this season, all the scores are added up and I discovered I was the over-all winner in my League which means another trophy on Awards Night next month (already 3 and counting) 🙂

Last weekend was Mothering Sunday so I took my Mum and Dad (and Bertie!) out for lunch.  My throat was killing me because of the lergie, so the two tonne of ice cream I consumed despite already being full to the brim with Thai Fishcakes was purely medicinal honest 😉

It’s soooooo nice to be back online and feel connected to the world and you all again!

 

 

Weekly roundup

My laptop is poorly, so is going away to be made better.  I wish it were that easy for me – a bit of soldering and I’d be good as new 😉  So you won’t get a blog post for a week or two until it’s back as I only have my miniscule smart phone and can’t type on that as my thumbs are too big!

I had an absolutely awesome day last Tuesday.  I decided on a whim to dump the dog with my parents and drive to the coast, to a local aquarium.  I spent 2 hours there with my camera (it’s brilliantly disabled friendly) then had a tootle round to the sea, nearly being blown away by the hurricane stiff breeze in the process.  On the way home I called in at a local Stone Circle to take a couple of snaps and arrived back at my parents absolutely and utterly knackered and so stiff I could barely move, but happy as a pig in muck 🙂

This week was the anniversary of Bertie’s adoption.  Six years ago I went to see this timid, frightened, unkempt little chap in the rescue centre and fell in love.  The first month I had him was such hard work and made me so ill I nearly sent him back, but was so besotted I already couldn’t imagine my life without him.  Thank God I stuck it out, though wouldn’t like to tackle that first year again in a hurry!  We are now best buds and a real team.  We are together virtually every minute of every day and he enriches my life in ways I could never have imagined.  Without Bertie, I would never have even bought a camera so he is also responsible for me taking up photography, without which I now can’t imagine my life.  I LOVE HIM to the moon and back, and tell him so ten times a day.


I also love my little cottage, but know that as I age and my already dodgy body gets even dodgier I’ll probably end up a wheelchair user and my house wouldn’t accommodate wheels.  So for a while now I’ve been looking for a one story cottage or bungalow to buy.  There is a ridiculous lack of such houses in the countryside, let alone ones that aren’t too near neighbours so I can rest quietly in the afternoons, and those that are around are so expensive they are well out of my price range.  This weekend I went to look at a little property that would be *ideal*, however it has been boarded up for 4 years and needs a shed load of work to get it even habitable, which doesn’t bother me having already renovated 2 houses but I’d have to sell my current house to pay for it and then would have nowhere to live while the work was being done.  Dilemma!  And one which needs considerable thought in the next 4 weeks before the auction, at which I’ll probably be outbid anyway!!

All for now my friends.  I’ll be back when my laptop is fixed.