Weekly roundup

I’ve been feeling rubbish for a month now, with particularly bad ‘brain fog’.  Both my back pain and insomnia are the worst they’ve been in years and my get up and go has got up and gone.  My joints are stupidly stiff, particularly in a morning, and there isn’t a ligament, large or small, which doesn’t hurt.  Yay.

I’ve not had a cold or a virus, not been under any different stresses to usual and not been doing or eating anything I shouldn’t, so I can only put it down to my hormones which are definitely on the rampage.  My endometriosis pain is really bad every single day at the moment and I’ve no idea why that should be other than my peri-menopause is ramping up a gear.  I feel like I’m having a permanent period only without the bleeding – my worst nightmare.

However, life carries on and this week has been really busy.  Wednesday I did the 60 mile round trip to the city for Mum’s oxygen assessment for which we’ve waited nearly eight months.  It’s a dedicated COPD clinic and the physios there were lovely.  They were mortified that my Mum had lung surgery 5 years ago and has not had a single appointment since with a dedicated COPD team nor any kind of rehab, and we haven’t been given a scrap of information on her disease, how to manage it or what to expect as it progresses.  That’s because there is no COPD Clinic where we live, but just because we don’t live in a city doesn’t mean we should have a complete lack of health-care for this terminal disease.  It’s a bloody outrage.  The outcome of the appointment is that Mum’s breathlessness isn’t so much a result of a deterioration in her disease (although she is in the ‘severe’ category) but more to do with her absolute lack of fitness coupled with her poorly lungs.

Thursday I had to starve myself until 2pm ready for my gallbladder scan.  I knew I didn’t have gallstones but they did find 2 small polyps.  I seem to be riddled with polyps as they also found no less than 11 when I had my first stomach endoscopy, some of which were really quite big.  They aren’t common in the general population and I would guess are mast cell disease related (there is research which shows increased mast cells in endometrial polyps and some debate as to whether mast cells are implicated in both nasal and colon polyps which have become cancerous).   Polyps can turn nasty so should be monitored regularly, which doesn’t happen because my local hospital is skint and can’t afford to do preventative medicine.  I’m still waiting for an appointment to see the Gastroenterologist about my continued stomach/oesophageal pain and low iron levels, which I can’t convince anybody is just severe reflux (due to overly zealous mast cells producing too much stomach acid, and my weak connective tissue causing my stomach sphincter to be floppy and allowing the acid into my oesophagus.).  I also suspect I have endometriosis on the outside of my stomach but good luck with having that confirmed, because my local hospital missed the humongous amounts of endo in my pelvis when another hospital found it no problem!  They really are feckin useless.

Friday I had to be up at the crack of dawn as a plumber was coming to service my gas boiler and fire, so I had to empty out the airing cupboard in the bathroom.  Afterwards, I followed him into town to my parents’ house as they’ve had a godawful smell coming from their kitchen sink for ages now which, despite our best efforts, we haven’t been able to solve.  I got there to find my Dad looking totally washed out and discovered he’d been up all night puking.  He’s never ill so to discover he’s had some kind of bug was a shock.  Bless him, he’d been sick in the bathroom sink and must have given it a blockage because the water then wasn’t draining well so I had to nip up to B&Q for some sink unblocker.

My Mum now really struggles to get up off the couch, so this week got rid of one of the little sofas in their lounge ane replaced it with 2 riser recliner chairs, so while the plumber was doing his thing my Dad and I spent 2 hours repositioning all the furniture in the lounge trying to find the best place for them.  My back was sodding well screaming before I even started and my poor Dad looked like he was about to keel over.  Inbetween all that, my brother rang and asked my Dad to give him a lift to work so I went instead as I didn’t think Dad was up to driving.  I then had to organize for the old sofa to be taken away which sounds easy but was a sodding nightmare.  I felt so sorry for the Old Fella who, bear in mind is nearly 80, had hardly had a wink of sleep, been violently sick then had to clean up after himself, change the bed sheets and wash them along with his pyjamas, and was just expected to carry on like nothing had happened.  If my Mum had been up all night puking she would have expected to stay in bed and be cared for but my poor Dad gets no such treatment.

My garage is up a shared driveway and I have to pass my neighbour’s house to get to mine.  I often stop to chat to the lovely couple who live behind me but on Friday discovered a very stressed Rob who was having a mare with Amazon.  £79 had gone missing from his bank account and despite trying for 1½ hours he still hadn’t got it sorted out.  My neighbours are in their seventies and find the internet confusing, so I said I’d help.  I discovered he’d been signed up for Amazon Prime without his knowledge (he didn’t even know what Amazon Prime was) so I managed to cancel the subscription and get him refunded.  All of which meant I didn’t reach my back door until 4pm and was just about on my last legs due in no small part to the fact I’d only managed 3 broken hours sleep the night before.

Summer officially arrived on Saturday and the weather is gorgeous so Bertie and I sat by the river for a couple of hours watching the wildlife and having a much needed chill.  To me, where I live is paradise and as I lay there in amongst the buttercups, with little Sandmartins swooping overhead, sheep and lambs peacefully grazing just feet away and the gentle babble of the river in which a Heron was fishing I couldn’t help but count my blessings.  Days don’t get any better than that 🙂

 

Weekly roundup

I’ve had a shit week health-wise.  My last period was weird and has left me feeling rubbish.  In particular my histamine is way high – I know this because I have rampant insomnia, am peeing like a race horse, sneezing, itching, my back is in constant painful spasm and I’m having some mild reactions after eating and taking my H2 antihistamine meds.  Hives are always the last thing to appear, but appear they will – something to look forward to then 😉

In addition, I’ve had some quite bad M.E. days, the kind I’ve thankfully forgotten existed.  My brain fog has been really intrusive and left me feeling like I’ve got dementia, and I literally had to stay in bed one day as I lost all feeling in my legs.  I had a very scary hour one afternoon when I was driving somewhere I’d been going to for 40 years and got lost – I genuinely couldn’t remember how to get there and ended up driving round in circles for 20 minutes.  WTF?!

My Mum turned 77 this week.  I wish I could say I enjoyed her birthday with her, but to be fair all events are marred by her drinking now and I just endure them more than anything.  She seemed to have a nice time though so I guess that’s the main thing.  She’d asked for an electric soup maker which I bought her, but when she rang me smashed out of her skull at 6.30pm to tell me she’d made her first batch of soup it kind’ve spoiled the gift for me if I’m honest.  I know it shouldn’t have but it did, and I need to acknowledge that to myself.  After my counselling I don’t get angry about it like I used to though, so that’s good.

My Dad’s been having some dizzy spells and it must have been bad because he made his own appointment to see the Doctor!  She said he has a slow heart beat and thinks maybe his prostate medication is the cause, so he’s been taken off that to see if it helps.  Lots of things can cause dizziness in the elderly though, so it’s just going to be trial and error to discover the culprit.

The General Election result was a total disaster and I bet the cocky Conservatives wish they’d never bothered.  This bloody country continually shoots itself in the foot and is, quite frankly, going to the dogs.

My best mate is also having a rough time of it, so we met for lunch yesterday and had a laugh to take our mind off things.  Thank God for her cos she keeps me sane.

Even though my brain has been fried I desperately needed a distraction from how crap I’ve been feeling, so worked on a couple of photos I’d taken.  The marble Bust one, done using my bed sheet and marble effect toilet seat!, is just OK (I can’t get the eyes right) but I quite like the horse:

 

 

Confused.com

I’ve never claimed to have any answers to my, or anyone else’s, health problems and freely admit I just muddle along with the rest of you in the land of The Confused.  And there is no more confusing a world than that of histamine, as I’m sure many of my readers have discovered.

Having said all that, I’ve been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Disorder (MCAD) for 4 years now and have learned and made discoveries along the way so thought I’d share this knowledge, for what it’s worth, with you.

When I was first diagnosed I knew I had to start an elimination diet because I was having anaphylaxis every time I ate.  Naively I just thought there’d be a foolproof diet online that I could follow and all would be well.  Oh, if only it were that simple!  I did, indeed, find diets online that claimed to be ‘low histamine’ and I followed Dr Joneja’s because she seemed like an expert and the diet was comprehensive………but it was a nightmare.  As a pesco-vegetarian it cut out all the foods I’d lived on all my life and didn’t tell me what to substitute the excluded foods with.  Having been sick with M.E., which decimates your digestion, for years before my mast cells exploded I knew that lack of good nutrition causes as many issues as exclusion diets solve, so I instinctively realized that simply cutting out so-called “high histamine” foods without substituting foods with equal nutritional value would be disastrous.  Bearing that in mind, I set about trying to find alternatives, eg I cut out tinned, chopped, tomatoes in recipes but substituted them with a home-made red pepper sauce.  I cut out Cheddar Cheese, but substituted with Mozzarella cheese.  I cut out fresh fish, but substituted with frozen fish which I discovered was gutted and frozen on-board the ship thereby reducing its histamine load.  I cut out spinach, but substituted lamb’s lettuce.  And so on.  It took about a year but I finally came up with a diet which was still balanced and nutritious but low in histamine (or so I thought!).

This is what I learned: if you exclude a food, try to substitute it with a food of equal nutritional value. 

After 4 months on a ‘low-histamine’ diet I stopped having anaphylaxis every time I put food in my mouth and the relief was enormous.  But many of my symptoms were still present, eg. hives, insomnia, itchy skin, nausea etc.  It took a while to work out what was going on, but I discovered that mast cells react to all sorts of things, not just what we eat, and that realistically I was going to have issues for the rest of my life.  In particular I was in my mid-forties and had begun peri-menopause and I learned that hormones have a massive impact on mast cells.  There was nothing I could do about the situation and 4 years down the line I’m still suffering the effects of wildly fluctuating menopausal hormones on my histamine load.  In addition, I react badly to stress (which with 2 sick aging parents to look after can be unavoidable), extremes of temperatures, my dog, some pollens and simply doing too much and getting too tired.

What I learned: I could not manage my MCAD using food alone.

My next big revelation was that all of the advice on low-histamine foods online seemed to contradict each other.  It took a lonnnng time to figure out why, but eventually I discovered that no-one was testing food for its histamine content and that all the lists online were based on nothing but guesswork.  I was devastated by this revelation and everything I thought I’d learned about food and histamine came crashing down round my ears.  It was then I really started to look at where the information online was coming from and wrote my ‘Histamine in Food: the Evidence’ page.  Even popular histamine writer The Low Histamine Chef can’t find a lab that will test for histamine in foods and with all her connections if she can’t find proper info on the histamine content in foods it doesn’t exist.  That doesn’t stop people occasionally coming on my blog and telling me I’m talking crap and that this food or that food is high or low in histamine, not realizing that far from me being wrong, they are wrong and when I ask them to back their claims up with hard data they never can.  Bearing this in mind, and finding sticking to a rigid low histamine diet really difficult, I started to experiment with re-introducing certain foods.  I still exclude foods which I know have been properly tested and found to be high in histamine, eg. hard cheese, aubergienes, tinned fish, soya but now eat normal yeasted bread, beans and pulses (including red kidney beans as there is not a scrap of evidence they are high in histamine), and my symptoms are no worse than before.  Having said all that, my re-introduction of chocolate was a disaster and definitely increased my histamine load, so it is still forbidden *sob*.

What I learned: only a handful of foods have been tested for their histamine content.  We have no clue whether most fruits or veg are high histamine.  So-called low histamine diets are far too rigid and unnecessarily cut out highly nutritious foods.

My next big revelation came from my lovely readers, who would write and say that although I might be tolerating lentils, or wheat, they reacted to them.  This totally threw me, so again I researched what might be going on and discovered that we are all simply individual and will react differently to our friends.  In addition, just because we’re reacting to a food doesn’t mean it’s because it’s high in histamine.  You might also have a problem with nightshades, fructose, gluten, lactose, salicylates or any number of other components in foods, whereas I might not.  This is why I don’t give advice on my blog.  For a start I’m not qualified to, secondly I don’t know you and thirdly we are all so different that it would be totally pointless in any event because what works for me might not work for you.

What I learned: we are all individual and our mast cells react differently other people’s.

When I was first diagnosed I read everything I could about MCAD………..and found that much of it was totally contradictory to my own experience.  For example, on Yasmina’s Healing Histamine website is this post about Melatonin and how research has shown that it counter-balances histamine.  I’ve had horrendous insomnia because of my illnesses and years ago tried a Melatonin supplement, which gave me one of the worst mast cell reactions I’ve ever experienced.  Wondering why, I had my melatonin level checked by a lab and discovered it was  actually far higher at 3am than a healthy person’s, despite the fact I was wide awake!  So melatonin doesn’t appear to be reducing my histamine levels, which flies in the face of this research.  The research does say, though, that mast cells produce melatonin which makes more sense – my mast cells were rampant and this would obviously mean a high melatonin output, but in my case this wasn’t a good thing!  Some of the histamine writers online are treated a bit like God and their every word taken as Gospel, but trust me when I say if Dr Afrin doesn’t have the answers yet no-one else does either.

What I learned: don’t believe everything you read.

My experience with MCAD is that it is a highly fluctuating condition, which changes over time.  For example, when I was severely ill with M.E. (which as my readers know I think is some kind of mast cell disease) I was highly sensitive to chemicals, eg. I couldn’t bear to read a newspaper because the ink used in the printing gave me asthma-type symptoms.  I couldn’t tolerate normal paints, hairspray, perfume, bleach and any number of other substances.  However, as my M.E. started to improve my chemical reactions also improved and now I don’t have any problems with smells.  My drug reactions started off fairly minor, with me reacting to just the odd medication, but over the years this has gotten worse and worse to the point where I have anaphylaxis to just about all drugs.  To make matters worse, I can start off tolerating a drug really well but 12 months, or 6 years, or 20 years down the line suddenly have anaphylaxis to it and be unable to take it ever again.

What I learned: things can change, for the good or the bad.

When I was diagnosed with MCAD I thought there would be information out there in cyberspace that would have all the answers and it came as a huge shock to discover that that information simply doesn’t exist.  This is a new area of medicine and even leading Doctors in the field are still finding their way around the complexity of mast cells and the havoc the chemicals they release (like histamine & prostaglandins) play on our bodies.  If the experts don’t have the answers yet, no-one else does.  Not me and not other bloggers or writers, and if they pretend they do they’re fibbing.  Much of the research cited online is conducted on animals or in a lab, and this often doesn’t translate to human beings.  We are decades away from any real understanding of mast cell disease and when it does happen you can bet your life the answer won’t lie in whether or not you eat Pak Choi on a regular basis!  There are diets which may help, but absolutely won’t cure you.  There are drugs you can take which might help, but won’t cure you.  There are supplements you can take which might help, but won’t cure you.  There are ways you can live your life which might reduce symptoms, but again won’t cure you.  And that’s because MCAD is currently a chronic, incurable disease.  Sorry to be the bearer of bad news 😦

What I learned: MCAD may, or may not, be manageable but certainly isn’t currently curable.

My journey with mast cell disease is ongoing, but I’ve learned a fair bit over the past few years.  You’d think this would make me more knowledgeable, but in fact it’s been the opposite and there are days I feel more confused than ever!  My biggest revelation has been that we are all basically in the dark……Doctors, Researchers and Patients………because our knowledge of MCAD is in its infancy and, much as we’d all like it to be different, no-one really has the answers to our questions yet.  Which makes me feel kind’ve adrift and alone and scared.  But I’ve had M.E. for 2 decades too and no-one knows anything about that either and I’ve survived….just.

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” 😉

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!

Weekly roundup

It’s officially the end of my stay-cation and I am officially exhausted, which wasn’t quite the plan!  It is, in large part, self-inflicted though because I’ve waaaayyyy over-done it so I really can’t complain……well, apart from the fact I have my period, which isn’t self-inflicted in any way and is making me feel absolutely and utterly rubbish.  I have barely slept all week due to hormone induced night sweats and a whizzing brain, a 3 day migraine and awful back/pelvic pain but apart from all that I’ve still had fun 😉

Last Sunday I attended a family lunch as my cousin and his family were over from Australia having emigrated to Perth 13 years ago.  My cousin became a Grandad recently and he wanted to bring his Grandson over to meet us all as he is the only male descendent left who still bares our family name.  For my grandparents to have 7 children, 19 grandchildren, 26 great-grandchildren and 14 great-great grandchildren and only one of those is male and carries their last name seems unbelievable to me!

Monday was a bank holiday here in the UK and the weather was uncharacteristically nice for spring, so I dumped poor Bertie with my parents and spent a few hours taking photos at various locations.  Herons here in sparsely populated Cumbria are very shy birds, who will vamoose if they spot a human half a mile way, so I have tried unsuccessfully for 4 years now to get a decent picture of one and failed miserably.  But I am nothing if not determined, so I got set up under a camouflage net with my camera on a tripod and just sat, and sat, and sat until one appeared on the river near my house and I was lucky enough to catch a few snaps before some walkers came along and scared him off again!  It’s still not the best picture in the world but I think it’s as good as I’m going to get.  I sat for so long I literally lost all feeling in my legs and fell over when I tried to stand up.  I also don’t think my hips, back or neck will ever be the same again 😉

Tuesday I had to go for my yearly eye exam, but thankfully all is well and I don’t need any new glasses which is just as well as I am absolutely and utterly broke.  Tuesday night I started with a migraine which lasted for nearly 48 hours.

Thursday my Groomer came to the house to clip Bertie who desperately needed his summer haircut.  He’s so good at being bathed and clipped, but all the dog hair floating around afterward makes me itch like mad (I’m actually allergic to dogs!) so I had to have a shower and put fresh clothes on!

Friday I had another migraine.  Oh joy.

Saturday was my parent’s wedding anniversary and they’d offered to take me out for lunch, which would have been lovely if my Mum wasn’t already drunk by the time I picked them up at 11.30am.  She doesn’t get up til 9am, so how the hell can she be drunk less than 3 hours later? *sigh*

Today I’m taking my scooter in the boot of my car and visiting a local bluebell wood with a friend from Camera club.  I don’t think we’ll get any nice shots as it’s sadly very overcast, but my friend hasn’t been before so we’ll go for an hour and can always go back on a better day if needs be.

In-between all that (!) I’ve been fiddling with the photos I took of my friend’s daughter and promised one of my readers I’d put the pictures up here for them to see:

The top one I’m just calling ‘Alice’ as it has an Alice in Wonderland playing card theme.  The bottom one is called ‘Forgotten Doll’ and is a bit creepy, but creepy is fine by me 🙂