Weekly roundup

I’ve sadly been to many funerals over my lifetime, and as the deceased’s nearest and dearest stand giving the eulogy I’ve often wondered if they ever told the dead person what they’re telling the rest of us.  How precious they were to them, how they changed their lives, all the times they helped them, or made them laugh.  How much they were loved. I’d personally prefer to say all these nice things to the people in my life while they’re still here, so I copied the blog post I wrote about my Camera Club friend John and emailed it to him.  I had emailer’s remorse the second I did it, and had no idea what his reaction would be, if I’d embarrass him or myself, or whether it would make our next meeting awkward but then I figured so what if it did?  I wanted him to know how much his kindness had meant to me over the past 3 years and that I valued the qualities he possesses as a human being, which I find are rare these days.  I needn’t have worried.  His response was lovely and I think he was shocked but secretely pleased.  Even at the age of 70 it’s nice to know that we are appreciated.

The first half of my week was uneventful, the second half not so much.  My Monthly Friend made an appearance on Thursday and left me a complete gibbering wreck.  I had a migraine which lasted three days and from which my head has still not recovered, and was so emotional on Friday I literally couldn’t stop crying.  I can’t remember the last time I sobbed like that and to be so out of control of my emotions was most disconcerting.  I’d been awake half the night with period pains and what felt like rats gnawing at the inside of my skull, then logged on to my laptop to find that John had bought me the Elements 13 software and his kindness was all too much.  I started to bawl and once the floodgates had opened I couldn’t close them again.  The more I cried the more my head pounded and the more nauseous I felt, but it made no odds.  Bloody hormones, I’m a martyr to them at the mo!

Despite my emotional fragility and stonking headache I’d arranged for my friend’s two kids to come over for a photoshoot in the afternoon so I eventually had to pull myself together.  I had the eldest dress up as a mermaid and tried my hand at faking an underwater picture, which still needs a bit of work but has turned out OK.  I get really excited about creating composite pictures and totally immersed in them.  It’s such a fantastic distraction and I feel truly alive when I’m being creative.

I get criticized about all sorts by readers of my blog, and one of my biggest crimes is that I don’t understand issues properly.  Whilst it’s true I don’t have a degree in genetics or nutrition 90% of my readers don’t either, so I try to tackle subjects simply and in a way we can all grasp.  For example, you will never see me write about “heritable disorders of connective tissue” (say whaaaat?!) because to most people it means fuck all.  In any area of life the more knowledgeable and skilled people become the less they speak in a language that the lay person can understand, which is fine if you’re conversing with other Doctors or Researchers but rubbish if you’re speaking to Patients.  When Charities are producing literature or giving lectures to Joe Public I wish they’d stop with the medical jargon and just speak in good old plain English.  It applies to any walk of life.  My Camera Club holds a beginner’s photography course but the guy who runs it has been taking photos for 30 years, so twitters on about ‘focal lengths’ and ‘lens distortion’ when the people he’s speaking to just want to know how to point and shoot and not have a blurry photo at the end of it!  I sit in the audience and watch their eyes glaze over and their interest wander and it actually becomes all about the ego of the lecturer and how clever he is to know everything about everything rather than how to help others become better at taking pictures.

More research out this week shows ‘breakthroughs’ in the puzzle which is M.E./CFS.  The trouble is the ‘breakthroughs’ are on different subjects, one being energy (*sigh*) and the other the immune system (more promising IMHO).  Patients online get all excited and then we hear nothing ever again.  I don’t even bother reading it any more because I’ve had 20 years of ‘breakthroughs’ when it comes to M.E. and we’re still none the flippin’ wiser.

More terror-induced carnage in the UK overnight.  What an absolute waste of life 😦  I have no idea what ISIS hopes to achieve.  If Hitler, who killed millions of Brits in the war, couldn’t break us a few lone terrorists aren’t going to.  I sometimes wonder if these men (and it’s always men, particularly as women have no value in this ideology) just like violence.  They like the feeling of power and control it gives them and while in the beginning it’s to do with religion or land, in the end that just becomes an excuse to murder people for the sheer thrill of it.

Little Acts Of Kindness

I sometimes despair of the world.  There is so much greed.  Young people are obsessed with how they look and not who they are.  Older adults are obsessed with what they have, what car they drive and where they go on holiday so that they can brag to their friends.  We’re often too busy in our overly-full-of-stuff lives to bother much with our neighbours or vulnerable family members.  Gone are the days where we all used to not have much of anything but looked out for each other nonetheless.

Despite huge need at times, I haven’t exactly been on my nearest and dearest’s radar (parents aside).  It’s probably my own fault.  I am fiercely independent and don’t want to be treated as a victim, because I don’t feel like a victim.  I don’t want pity or charity, though loving kindness is always welcomed.  I appear to have it all together and it takes a keen eye to see through the act I put on every day.

When I joined my Camera Club I struggled.  It was mostly full of retired professional men who had formerly been Vets or Solicitors and who seemed to have money to burn, or middle aged women who were married to rich men and had holiday homes in Barbados and Spain.  They were buying the latest cameras, lenses and equipment and I, stony broke, was making do with a nine year old 3rd hand camera off Ebay.

My weird and creative pictures often weren’t much liked by the old male judges who preferred photos of steam trains or lighthouses, and at one stage I threatened to quit because I felt like I couldn’t keep up with the rich members and the judges hated my stuff in any event.  I emailed the competition secretary and told him of my decision but instead of just accepting it he helped me.  We ‘talked’ for hours via email, with him encouraging me at every step of the way, building my confidence and listening patiently to my grievances.  The outcome was that the way the competitions were run was changed for the whole club, and a big effort was made to invite female and younger people to judge our images which made for a more level playing field for everyone.

I’d not even spoken to the competition secretary, John, before then.  He was 70, very shy and I hadn’t taken much notice of him to be honest.  But as I got to know him I realized here was a man kind to the bottom of his soul, who lived with honesty and integrity, who saw both sides of the argument, who was quiet and unassuming yet had the strength to stand up for what he believed in if the need arose.  We got on like a house on fire and have regularly emailed each other ever since, though we still don’t speak much at Club as John’s shyness gets in the way.

This week there was an offer online for some software.  I can’t afford it, but with $200 off the recommended price I couldn’t resist buying it anyway!  But then I discovered that it won’t work with my editing software, Photoshop Elements 11, because it’s too old.  John had found the same thing, so he upgraded his Photoshop to Elements 13 and offered to let me put a copy of his new Elements 13 on my machine.  Knowing that you can only do this a limited number of times and that John had more than one laptop, I emailed my thanks but told him to put the software on his own machines and maybe I’d ask Santa for the upgrade for Christmas this year.

This morning, I logged on to my emails to find a message from John which read: “Jak.  Thanks for making the correct moral decision.  I have now ordered you Elements 13 from Amazon which will be delivered to your home next week.  Please accept with my best wishes.”  I feel tearful even now just thinking of his kindness.  Not only that but my lack of greed in not taking one of his licences, even though I really wanted and needed it, had been acknowledged and appreciated.  I can’t possibly accept his offer and have already emailed to say I will reimburse him, but I suspect he won’t accept.

As I said earlier, I haven’t been helped much in my life but now and again someone comes along who sees past my pride and bravado and recognises that I struggle.  As a kid it was a couple of teachers, who realized that being a very bright kid from a dysfunctional working class family was difficult and who gave me extra help to achieve my potential.  As an adult, it’s been a couple of people who have realized that living alone with debilitating illness and a lack of money is challenging and have helped me in subtle, and not so subtle, ways.   They will never know the difference their belief in me and their acts of kindness have made to my life and to my faith in human nature.

Nearly all the people who have helped me have been men, middle aged or older.   I don’t know why that should be, but they just seem able to see past the strong, independent, capable face I show to the world and recognize that maybe my life is harder than I let on.  Maybe they just see that, despite my own hardships (or probably because of them) I try to be a kind and thoughtful person and they want to be kind back.  I don’t really understand the reasons why women haven’t helped me, even as a kid, while men have but I am truly grateful.

We all need help sometimes, even when we pretend we don’t, and our small acts of kindness can be returned to us tenfold in unexpected ways and from unexpected people.

It’s all it the genes…

…or is it?

It’s an exciting time to be alive and our genetic information is going to change health-care forever.  I had my DNA tested via 23andme years ago before it was hugely popular, which was a simple process of spitting into a tube and sticking it in the post back to the States.  I did it for ancestry purposes because we suspect some of my maternal forebears were Vikings who came over to Britain in the 700s AD to rape and pillage, and I didn’t really twig at the time that it would profile my health data.  As it turned out, I am 100% European and do have Scandinavian DNA, though am now 71% British/Irish.  The Irish doesn’t surprise me as we have lovely red hair in our family although my personal chance of being a red hair gene carrier is only 5%.

My DNA told me that I likely had wavy hair (true) and blue eyes (also true).  That I would be crap at running (true) and not lactose intolerant (also true).   More importantly I didn’t carry the BRCA breast cancer gene and was significantly less likely to develop Alzheimer’s Disease than the general population (no idea how they know this as we don’t know what causes Alzheimer’s and if we don’t know what causes a disease we also don’t know who will, or will not, develop it).

But then it got confusing.  I am literally the spit out of my Mum’s mouth and both she, and my maternal Grandmother, had Dupytren’s Contracture yet according to my data I am at low risk of developing the disease myself.  This could turn out to be true and I could be lucky, but being as though I have every other genetic trait my Mum possesses I somehow doubt it.  My genes showed I do not flush after alcohol (another incorrect assumption), that I am not at risk of developing Restless Leg Syndrome when in fact I’ve had horrendous restless legs since childhood (both my parents have the disease), I’m no more likely to have Endometriosis than anyone else (I’ve had Endo since I was a teenager) and that there’s a high chance I was lower than average in birth weight when I was actually quite porky for a small framed baby at over 8lbs!

And there’s the rub.  Just because our genes carry certain genetic codes doesn’t mean we will, or won’t, develop certain diseases.  I don’t show highly for being either long or short sighted, yet I am both and started wearing glasses in my early 30s.  It has nothing whatsoever to do with my actual eyesight, however.  I have astigmatism, in other words the shape of my eyeballs is changing over time from being round like a football to being oval like a rugby ball and this is causing my eyesight to decline.  My Optician strongly suspects this is connected to my Ehlers-Danlos and I probably agree with her.  I may not genetically be pre-disposed to flush after alcohol, but the fact I have Mast Cell Disease and Histamine Intolerance means that I am highly sensitive to the biogenic amines in alcoholic drinks and it’s this which causes me to resemble a Lobster when I am drunk.

Genes are hugely complex and can be affected by both internal and external factors.  The fact I have EDS, Endometriosis, MCAD and M.E. predisposes me to complications such as osteoporosis, retinal detachment, heart disease, female cancers and a host of other things, though if I didn’t have my pre-existing conditions I’d genetically not be pre-disposed to any of them.

We are all completely and utterly unique and lumping our DNA traits with other people’s and then extracting average data isn’t hugely helpful.  My Mum obviously carries the EDS gene yet her symptoms are very minor compared to mine, so even if we are genetically predisposed to have a disease there is no way of knowing how severely, or not, it will manifest.

For the reasons mentioned above, I’ve never dabbled with genetics.  It’s a massively complex area and we’re only in the very early stages of understanding how our DNA impacts our health or why someone without a gene mutation can develop a disease, while someone with the gene mutation doesn’t.  How pre-existing conditions affect the expression of our genes or how genes can be turned on and off.  So if you do go ahead and have your DNA tested don’t be lulled into a false sense of security, or conversely too alarmed, by the results.  I just treat it as a bit of fun, though hopefully because I’ve opted into research on the 23andme site my genes might help our understanding of susceptibility to disease, if not our certainty.

Weekly roundup

We’ve had an unexpected heat wave this week and it’s been fabulous.  I feel so much better in warm (not hot!), sunny weather with more energy and less pain, not to mention the psychological boost.  The Farmers aren’t quite so happy though, as they’ve recently planted summer crops and we’ve hardly had a drop of rain for 6 weeks now.  Combine that with a week’s worth of 26C heat and the seedlings are all suffering.  It’s due to cool back down to the usual 15C tomorrow but there’s still not much rain due, which is great for me but bad for the plants!

I mercifully didn’t feel any ill effects from my endoscopy, other than having a very sore throat and diaphragm for a few days.  In fact, due to the fabulous weather my energy has been great this week and I’ve managed to do a little bit of gardening, potting up some tender summer flowers that I’d grown from seed in my kitchen windowsill.  Bertie helped, by pinching mouthfuls of fresh new soil out of the pots and eating it.  He’s a strange boy 😉

The arm on my distance glasses broke this week and aren’t fixable, so I’m having to fork out £160 for a new pair.  I’m stony broke as I’ve been buying a Father’s Day gift for my Dad and presents for my Mum’s birthday next month and really didn’t need the expense :-/  I got my Dad a simple Pedometer so he can see how far he’s walked when he goes up the fells each week, but I’ve tried it out myself first because he’ll ask me how to set it up and use it and I had no clue.  I’ve worn it for 5 days now and am amazed by the results.  I’m sedentary obviously and there’s no way I’ll ever be doing the recommended 10,000 steps a day, but actually I’m more mobile than I realized and it’s surprising how the steps taken pottering around the house and garden mount up, all of which help to keep my muscles and heart healthy 🙂

Monday’s torture aside, it’s been a lovely quiet week and it’s been great to be out on my scooter without having to be trussed up like the Michelin Man to keep out the cold.  I really don’t have anything to tell you, which is great because it means there’s been no drama and weeks without drama seem to be few and far between.  I have had an email from the genetics company 23andme which has made me think about genes in general and I’m intending to do a post about that this week.  It’s also half term holidays and I’m hoping to do some more photos with my friend’s kids, so that will keep me out of mischief.   But right now I’m off to make some breakfast cos my stomach thinks my throat’s been cut 😉

 

 

Gastrointestinal problems

I have several issues with my gastrointestinal tract so I thought I’d cover them all in one post, which has ended up stupidly long so you may want to make a brew before you start.  On the other hand, if you’re squeamish, you may wish to look away now 😉

Bowel

I had my first issue with pooping when I was a toddler.  My earliest childhood memory is being pinned down on the bed, screaming blue murder, while my Mum shoved Vaseline up my back passage (be thankful we now have modern laxatives for children).  It was shit (excuse the pun), made me feel like I’d been physically assaulted and, to add insult to injury, it still didn’t make me go to the loo.

When I was a child I didn’t much like food and was a “fussy eater” consequently my diet wasn’t as good as it could have been.  Knowing now I have Ehlers-Danlos and how that affects your gastrointestinal tract, plus my lack of soluble fibre, it’s no wonder I couldn’t poop.  I was permanently constipated in the true sense of the word, ie my poo was small, pellety, hard and only came out occasionally with me straining til I thought a vein would burst in my head.

At 21 I became vegetarian and everything changed.  For the first time in my life I started to enjoy food, ate loads more fruit, veg, beans and pulses and my poop became better in consistency.  Sadly though it still didn’t come out easily and I only managed a bowel movement about twice a week.  I was eventually diagnosed with a “lazy bowel” – in other words they had no clue why I couldn’t shit.

Fast forward 25 years and my change of diet to ‘low histamine’ following my MCAD and HIT diagnosis and my use of H2 antihistamines.  Finally I am able to poop almost normally.  I go virtually every morning and my poo is normal in consistency.  Well, as normal as it gets for someone with EDS and an overly stretchy bowel – I actually produce crap the size of elephant dung and when someone accuses me of being full of shit they have no idea how accurate they are 😉  I no longer strain when I go to the loo but it is a bit like giving birth, and I sometimes have to flush the loo three times before my monster poo disappears!

My endometriosis and many burst ovarian cysts have caused adhesions to my bowel particularly on my right hand side and this also affects my ability to poop.  Add to this a suspected floppy ileocecal valve, where faeces passes from the small intestine to the large intestine, and my poo does has the tendency to get stuck there.  It’s painful and I can actually feel (and often see) the long sausage lump of poo in the lower right of my pelvis sitting there waiting to find its way out!

Due to the enormous size of my poo I’ve now developed piles, which are swollen veins which appear either inside or outside of your anus.  They itch, and can be sore, but at the moment don’t cause me enough problems to want to do anything about them.  I also have various types of abdominal pain, from all over colic through to random sharp pains, but the cause is anyone’s guess.

Despite all this I’ve never been windy, either up nor down.  One has to be thankful for small mercies 😉

I still have issues with my bowel but I’m amazed at the difference a low histamine diet and histamine-reducing medication has made to my toilet habits.  Who knew the havoc histamine was creating and I’m sure no Doctor would believe that my lifelong ‘lazy  bowel’ has been largely cured by simply reducing the amount of histamine my body produces!

Bladder

Speaking of histamine, reducing it has made a massive different to my wee habits.  I’ve always peed a lot, but in the several years leading up to my MCAD diagnosis I weed for England, often going 3 times every hour and having to get up three to six times during the night.  Reducing the histamine levels in my body has changed my life and I now feel I pee almost normally.  In fact, I know when my histamine levels are high because I start peeing more, including during the wee small hours (wee, get it?  *groan*).

People with EDS have stretchy bladders which you would think would hold more therefore you’d go to the loo less, but I feel it somehow causes me to wee more often than most.  I also do the longest wees in history as my bladder holds vast quantities of liquid.

Reflux/GERD

In 2006 I developed a chronic cough.  I coughed so much at times I honestly thought I would die.  I had all sorts of investigations – xrays, scans, peak-flow and allergy tests – and everything came back normal.  I now know I had silent reflux and that acid was escaping from my stomach up into my oesophagus and being inhaled into my airways producing walking pneumonia.  With silent reflux you have no indigestion, no typical burning pain in the stomach or chest, just a cough for which no reason can be found.

After about 4 years of coughing I developed upper back pain.  It felt like a burning, muscular pain right between my shoulder blades and was so bad at times I could barely sit upright.  Nothing I did alleviated it and it became increasingly difficult to live with.  At the time I just put it down to my EDS ligaments but I now know this was acid burning the back of my oesophagus.

A couple of years after the back pain started the typical pain of reflux began.  My stomach felt sore and inflamed, and the pain in my oesophagus right between my boobs was horrendous.  It went all the way through to my back and felt like I was being stabbed by a bread knife every second of the day.  I developed intense and chronic nausea which also really got me down and had the most awful taste in my mouth all the time.  As it progressed I could actually feel the acid rising into my throat burning the flesh – it felt like I was being boiled alive. I wouldn’t wish severe reflux on anyone.

I ate Rennies like they were smarties and knocked back Gavison by the truck load.  I slept with the head of my bed lifted 6″ off the ground, cut out fizzy drinks and tried all sorts of different diets which didn’t help one iota.  Unlike other people’s experiences of GERD which I read about online, my pain didn’t come and go – it was constant, even waking me up from sleep at night.  I couldn’t tie it down to eating any particular food and it was actually worse when my stomach was empty.

I had all sorts of investigations which were largely normal.  No ulcers, no H-pylori infection, no bacterial overgrowth, no hernia, no delayed stomach emptying/gastroparesis.  The only thing they did find on endoscopy was 11 stomach polyps which all thankfully turned out to be benign and gastritis (ie stomach inflammation).  In the end I didn’t really get a diagnosis other than chronic GERD of unknown cause.

I manage my pain with H2 antihistamines, which definitely helps with the nausea and stomach pain but doesn’t do much for the esophageal/back pain which is still a constant.  I also continue to have the awful taste of acid in my mouth day and night and a sharp, stinging pain where my stomach meets my oesophagus which feels like I have a permanent piece of dry toast stuck there.  When it’s really bad, the burning stinging pain radiates up into both shoulders and down the inside of both arms and goes from the bottom of my neck to my waist at the back.  I also continue to have a chronic cough, though nowhere near as bad as it was pre-medication, and if I breathe deeply my airways feel constricted and irritated.

I suspect the mast cells in my stomach are producing too much acid, but quite how it’s finding its way into my oesophagus is anyone’s guess.  Although I don’t have a large hernia maybe my diaphragm is floppy due to my EDS and just doesn’t do a good job of keeping my stomach contents actually in my stomach?  Or it could be something else entirely none of us have considered.

I am having an ultrasound on my gallbladder shortly, as bile backing up from the gallbladder can mimic the symptoms of GERD.  Interestingly, my Mum developed horrendous indigestion in her early 40s.  She describes the pain as the kind that “makes you bang your head against the wall” and an abiding memory from my teenage years is listening to her pace the floor groaning night after night after night for nearly a decade.  She was told she was being “dramatic” and needed to see shrink – after all, she was female and we all know women are just hysterical hypochondriacs don’t we?!  Eventually she was given a gallbladder scan, which showed an organ so diseased it had shrivelled up to a black dot and she had to have an emergency operation to remove it.  I clearly remember the Surgeon saying “I’m amazed you didn’t develop septicemia and die”.  My Mum never had gallstones and was the 1 in 20 people who develops chronic gallbladder issues for no obvious reason (except we now know she almost certainly has MCAD which is, surprise!, implicated in gallbladder disease).

Difficulty With Swallowing

When I became severely affected with M.E. I constantly felt like I couldn’t swallow properly.  My muscles felt floppy and unresponsive and I always felt like a had a large, swollen mass in my throat which I had to swallow past.  Naturally all tests were normal and no-one’s ever been able to tell me what this is all about.

As I started to improve this feeling lessened but has never gone away.  Even as I sit here typing this post my throat feels hugely swollen and with each swallow I feel like I want to gag.

Sore Throat

Needless to say, if you have M.E. you will inevitably have a chronic sore throat.  I continually feel like I have some kind of infection though my throat looks entirely normal.  The more I do the more my throat hurts, and if I way over-do it (either mentally or physically) I feel like I have tonsillitis.

This kind of symptom is why I get irritated when the focus for M.E. research centres on ‘fatigue’.  It’s so obvious people with well defined M.E. have some kind of immune issue going on, and the ‘fatigue’ is just a by-product of that.

Oesophageal Spasms

When I was severely affected by M.E. I developed what are termed ‘oesophageal spasms’, in other words the muscles in the oesophagus cramp which, for me, made me retch and retch and retch…….and retch some more.  It wasn’t related to feeling nauseous, I didn’t vomit and they were often worst in a morning just after I’d woken up for reasons I’ve never understood.  Once I could manage a warm drink they’d sometimes settle down, but there were days when they wouldn’t and I’d be retchy all day.  I still get the spasms, although they’re occasional now rather than an every day occurrence.

When I have a mast cell reaction to food or drugs the spasms are severe and I can retch for hours on end.  The chemicals released when mast cells activate causes muscles to contract, so I wonder if my spasms have been mast cell related all along?  If so why do they happen on waking though?  It’s still a puzzle and, although I don’t ever worry about it, it’s still decidedly unpleasant when it happens.

Nausea

I’ve always been a sickly person, even from childhood.  I suppose with everything that’s gone on in my gastrointestinal tract over the years it’s no surprise, but it’s something you never get used to.

My bedridden M.E. years were plagued by severe nausea, though this only occasionally became actual vomiting and that was usually because my oesophageal spasms/retching made me bring up bile rather than any kind of projectile puking.

These days I feel nauseous when I do too much (like tonight!) and if my throat feels swollen (like tonight!) – even healthy people feel sick if they’re swallowing past a sore, swollen-feeling throat.

On the whole, my nausea hasn’t affected my appetite though and I can eat a 2 course dinner feeling sick to the very pit of my stomach – go me 😉

Appetite

Speaking of which, my appetite has always been excellent.  No matter what has been going on I’ve still loved my food, which is weird for a kid who never ate!  When my HIT/MCAD exploded and I started reacting to everything I put in my mouth it was one of the lowest points of my entire life and trust me when I say I’ve had a few low points over the years.  No matter what else in my body had gone awry I’d always looked forward to my meals (and snacks, and sweets, and anything else I fancied!).  To suddenly be terrified of food and not be able to eat many of the things I loved was torture.  I still think it’s unfair of my body to inflict this on me and to take away the one thing I had left which I enjoyed 😦

Dental

At the age of about 9 I had to have four of my adult molars removed as I had a vastly overcrowded mouth.  I didn’t know it at the time but it’s a classic sign of Ehlers-Danlos Syndrome, along with my high roof palate.

When my M.E. was really bad my teeth ached.  It was like having throbbing tooth ache throughout my entire mouth and didn’t respond to any kind of painkillers.  I had similar throbbing pain in other parts of my body, particularly my knees for some reason, so I assume it was just part and parcel of the pain of having M.E.  As my illness improved the pain went.

Ehlers-Danlos pre-disposes you to cavities and early gum disease and I have both.  All my adult molars were filled by the time I was in my mid teens and now I’m nearly 50 I’m at the stage where they are all having to be replaced, alongside new bits of decay.   I am already ‘long in the tooth’ and have pain in my receding gums and actual teeth.  Smiling when it’s windy is no longer fun and eating anything cold makes me wince!  I had my first adult tooth removed last year which actually took a lot of coming to terms with.  You’d think after everything I’ve been through it would be no big deal, but it affected me emotionally in a most unexpected way, particularly as I didn’t have the tooth replaced and instead just have a huge gap and now can’t really chew on that side.

Conclusion

M.E., EDS and MCAD can all cause gastrointestinal symptoms so most of the time it’s impossible to know which disease is causing what.  Please don’t tell me to change my diet – I’ve been ill since the day I was born and there isn’t a diet around that I haven’t dabbled with at one time or another including gluten-free, dairy-free, sugar-free and joy-free!  Having to eat low histamine for the rest of my days is bad enough, and I’m already a vegetarian who can’t eat soya, so I’ve no intention of embarking on any more restrictions particularly as all the diets I’ve ever tried (bar low histamine) have not made one ounce of difference to my health.

Obviously I’ve tried drugs to help with my symptoms and one by one have become allergic to them all, in particular the medications used to treat nausea, so I use my hot water bottle for virtually all my gastro problems and it probably helps as much as anything.  I also have some Sea-Bands which sometimes takes the edge off my nausea as does lemon verbena tea.  Other than that I just have to get on with it, which I swear should be engraved on my headstone:

“Here lies Jak.  She suffered but she just cracked on” 😉

Endoscopy no.2

Before I start this post I must make mention of the terror attack in Manchester last night.  I literally welled up when I turned the telly on this morning at the thought of the grieving families who have lost their precious children, and the survivors who will have to live with horrendous blast injuries for the rest of their lives not to mention the psychological trauma.  I have no idea what the terrorists hope to achieve.  It’s not like the entire United Kingdom is suddenly going to go “OK, we’ll all become radical Muslims” now is it?  And let’s not forget that Manchester is a multi-cultural city with a large Muslim population and the concert was filled with brown children as well as white.  There is no faith which supports taking a life and even if there were it wouldn’t advocate taking the lives of others with the same faith.   The world’s literally gone mad.


So, yesterday was torture endoscopy day.   I wasn’t allowed anything to eat past 8am and eventually went 11 hours without food.  I was only allowed water until 12 noon, so went without a drink for 5 hours.  This is not good for someone who drinks like a fish just to stay upright and eats every 3 hours or she feels like she’s going to pass out, and driving 60 miles in that state probably wasn’t all that safe!

I went on my own to the Hospital as these days I have no-one to go with me.  It’s fine and I’m used to it.  My Dad did offer, but it’s more stressful trying to keep my eye on his wanderings and keep him entertained than it is to go alone, plus I don’t trust his driving despite the fact he recently re-passed his test.

Three days before, I’d had a phone call from a nurse who went over all my health questions with me on the phone.  Despite this, on arrival at the endoscopy suite I was taken into a room and asked all the same questions – why, exactly, and what a bloody waste of NHS money.  Having arrived at the hospital I had been told by the nurse on the phone to report to Reception, but they didn’t even take my name and just told me to go and sit in the Endoscopy centre – the system is a shambles.  I then sat in the waiting room for the next 1½ hours for reasons I couldn’t work out.

I was told I was having the procedure done by Debbie, the endoscopy nurse, but was eventually called in by a youngish man, who told me he was the endoscopy doctor – why they’d swapped me I have no clue.  He was vile.  Truly.  He took me to the tiniest room on the planet, then said
“so, you have Ehlers-Danlos!  Can you do party tricks?”
I was taken aback and stuttered “erm, well I used to be able to but am too old now”.
“You’re not old!” he exclaims.
Me, starting to get irritated “as you age you stiffen up, and anyway doing party tricks damages your joints so isn’t recommended.”
Him: “Have you had children?”
What the fuck has that go to do with anything? “No.”
Him: “Oh, cos I was wondering if they just popped out like shelling peas” he grinned.
Fuck off you dumb ass.  You’re making light of a disease which causes me untold daily pain and has wrecked my life.
Him: “Can I ask you a question?  What’s your life been like?”
I’m totally flummoxed by this and reply “in what way?”
Him: “Well, how has it affected you?”
I know from his attitude he doesn’t give a fuck how my life has been affected and I have no idea why he’s asking.  I just want to have my endoscopy because I’m terrified I’m going to have anaphylaxis and die.  So I reply “I developed M.E. after having meningitis, was bedridden for a decade and nearly died, so although having EDS is shit at least I can function which in my world is brilliant.”
Him: “What do you mean M.E.?”
Me: “I also have M.E.”
Him: “What does M.E. stand for?”
Me: “Myalgic encephalomyelitis”
Him: “Just checking you knew.”
Me in my head: “fuck off you weird twat.  As if I wouldn’t know the name of the disease which nearly killed me and has decimated my life for over 2 decades.
Him:  “You also have mast cell activation disorder.”
Me:  “I do.”
Him: “Is that confirmed or just probable?”
Me: “It’s mostly only ever ‘probable’ in the UK because we don’t have access to the tests we have in the States to confirm diagnosis.”
Him, laughing: “we have in the States?”
Me: getting pissed now.  “We don’t have access to the tests they have in the States.”  I’m anxious, exhausted, ill, dehydrated and haven’t eaten for hours.
Him: “Rights, let’s go.”  Then, as we’re heading up the corridor to have the procedure “you do know this can cause perforation and infection don’t you?”
Me: “Thanks for that, it’s not like I wasn’t already nervous”
Him: “Well I have to tell you these things”
Me: “Not 30 seconds before you do it you don’t.”

In contrast, the two nurses were absolutely lovely.  Before we got started, though, I asked the doctor if he could do some biopsies to be tested for mast cells as I think they might be causing my issues.  To cut a long, shitty conversation short, in which I’m made to feel like a hypocrondriac who has made her disease up, he says no.  In fact, the entire procedure took less than 3 minutes – he went in, had a look around, and came out again.  No biopsies of any description, not even of my pre-existing 11 polyps which haven’t been checked for cancer for 5 years.  What a waste of time.

For anyone who hasn’t had an endoscopy before I have to say this: it’s one of the worst things I’ve ever had done, and I’ve had a shit load of stuff done over the years.  I’m allergic to sedation, so can’t have it.  Instead they spray your throat with local anaesthetic, which makes it burn and then makes your entire oesophagus numb and feel swollen like when you have lidocaine at the dentist.  Swallowing is really weird and you feel like your throat is paralysed.  They lay you down on your left side and put a bite guard-type thing in your mouth with a hole in for the endoscope, which is a flexible plastic pipe with a light on the end.  It feels about a foot wide but is probably only about half a centimetre.  The lovely nurse rubbed my back and held my hand as the camera was inserted, but trust me when I say they have to be brutal to get it past your voice box area and you gag like your life depends on it, literally feeling like you’re choking, and your instinct is to try and pull it back out and to stop you doing that is the real reason why the nurse holds your hand 😉  It does feel like you can’t breathe with the tube in your oesophagus but of course you can – you really have to focus though, battling against panic, and breathe deeply in and out through your nose.  There’s another brutal shove, with gagging, choking and coughing as they get it through your diaphragm and into your stomach where you can feel it moving around.  It’s not painful but very very weird and uncomfortable.  Another brutal push and more gagging as it goes into your duodenum, where again you can feel it moving around.  And the whole time you feel like you can’t breathe and are choking to death.  Lovely.

My first endoscopy took about 20 minutes as they took pictures and loads of biopsy samples, but as I said earlier this time he was in and out within minutes.  Lots more gagging, coughing and choking as the scope comes out and it’s all over.  Thank God.

Apparently all is fine.  I have a tiny hiatus hernia not even worth mentioning and no inflammation.  How I can’t have inflammation is beyond me, being as though I have acid burning my oesophagus every day of my life and have had for several years now, but according to Speedy Gonzales everything was “plum normal”.  I fucking hated him.

Knowing my throat swelled last time I was fully expecting to be kept an eye on for at least half an hour, maybe longer, afterwards but no such luck.  I got up off the bed and was out the endoscopy suite literally 30 seconds after he took the scope out.  I did ask “what happens if my throat swells like last time?” as I was being escorted out the door and he just said “see a doctor”.  Thanks for that when my local cottage hospital doesn’t even have doctors on staff out of hours.

Luckily there was no significant swelling this time – it was such a relief.  I did spend the night feeling like I had the worst case of tonsillitis ever, swallowing past razor blades, and my throat is still really sore this morning but I managed to eat some soft food (mashed potato and carrots with salmon) for tea.

The Doctor did say that being as though all appeared ‘normal’ he wants me to go back for an ultrasound on my gallbladder so I’m now waiting for an appointment about that.  I then have to see the Gastroenterologist, who usually sees patients before all this stuff is done but wanted me to have the tests first so he had the results, which I can understand but if I’d seen him first he could have ordered the mast cell biopsies *sigh*.

I’m fairly sure I know what my pain is all about, but as usual Doctors don’t listen to me and aren’t willing to do the necessary investigations.  If it’s not something typical, like a hernia or an ulcer, they’re flummoxed and not interested in investigating further.  If the Gastroenterologist fobs me off I’m going to ask if it’s possible to be referred to an EDS specialist, ie Qasim Aziz down in London – I’ll probably be told no but it’s worth a try.

I’m tired, bruised and disillusioned this morning but at least it’s over with and I survived unscathed 🙂  My advice for anyone else having an endoscopy would be this: if you can, have the sedation.  You apparently can still feel the procedure but it’s not half as traumatic as having it done fully conscious!

Weekly roundup

It’s Sunday.  Again.  Blimey, I have no idea where the time goes!

I spent the first half of the week feeling rubbish after attending the Photography event last weekend, so consequently didn’t do much.  I’ve felt rubbish a fair bit recently and I’m starting to feel a bit overwhelmed by all the jobs piling up both at my house and at my parents’.  I can’t have felt that overwhelmed though, as instead of tackling said jobs on  Thursday when I was feeling a bit brighter I went with a friend on my scooter to a local bluebell wood instead 😉  The sun was shining, the insects were humming, the butterflies were out in force, the smell was breathtaking and I tell myself it was good for my soul (and it was).  I’m going to ignore the fact I trapped my finger in the back door on the way out and took a chunk out of my knuckle which bled everywhere and is still really sore.

Friday though I really did have to make a start on some jobs at my folks’ and it did feel good to get them out of the way.  Friday afternoon my computer decided to install the latest ‘Creation’ update for Windows 10.  It took over an hour and afterwards my touchpad didn’t work properly, all my notification sounds had reverted back to default, my taskbar was full of unnecessary icons like One Drive which I now can’t get rid of, my carefully calibrated monitor colours had gone to shit and my computer had slowed down considerably.  Way to go Microsoft!  So I spent another hour putting my laptop back to how it should be and cursing Bill Gates.

Saturday I was getting concerned about the fact my freezer was half empty, so I spent the whole morning cooking.  It fucking cripples me and at the end of it I’m in so much pain and am so exhausted I’m literally on the verge of collapse – if I ever win the Lotto the very first thing I would do is employ a chef.  I’m extremely proud that I managed to make some Gingerbread, 4 Lentil Dals, 4 Lentil bakes and 4 pots of rhubarb jam though – yayy to me 😉

This afternoon I’m meeting my bezzie for lunch.  I haven’t seen her for weeks as she’s been really unwell.  She has M.E. but is also Coeliac.  She and her partner ate out at a cafe they’ve been to many times before and she ordered a gluten-free turkey sandwich.  Not long afterwards she started to feel really sick and realized she’d been glutened.   When she asked the cafe owner what was in the sandwich it turned out it contained regular stuffing.  WTF?!  She vomited violently for the next 6 hours and it took two entire weeks for her to start eating normally again.

This is where the current fad for being ‘sensitive to gluten’ annoys the hell out of me.  So many people these days avoid wheat because it makes them bloated or because they’ve read online somewhere that it’s bad for you, so food outlets don’t really take the whole issue seriously.  But for Coeliacs it can be a matter of life or death.  If my friend eats gluten it can give her stomach cancer or make her puke so much she needs to be hospitalized.  By giving her a sandwich containing gluten the cafe owner has basically assaulted her, causing her actual bodily harm.  We both agree there should be some official body you can report this kind of thing to, as it’s now illegal in the UK to say food is allergen-free when it’s not.

I’m dreading tomorrow as I’m going for my endoscopy.  Wish me luck and here’s hoping my throat doesn’t swell up like last time!