Tag Archives: Mast Cell Activation Disorder

Won’t someone stop this train

I’m having one of those days weeks where I’m feeling overwhelmed.  I’m beyond exhausted, hormonal, feeling extra poorly and am, quite frankly, just plain fed up.  It’s been coming on for several weeks and, despite knowing I’m doing too much, am stressed, not sleeping and my health is suffering, I’ve felt powerless to stop the train.

My stay-cation, which started Saturday morning, has felt like anything but a holiday.  Last week I had meant to get on top of my laundry and stock up my freezer with food so that I wouldn’t have to do any chores, but was so busy with my parents that didn’t happen, so I spent most of the first day of my vacation cooking and washing.  I also found out that a friend in the village had dropped down dead from a brain hemorrhage the day before at the age of 43, which was devastating.

Sunday I spent the entire day putting together a five page objection to the plans to build 10 houses on a field next to my home.  Planning objections have to be based on law and material facts about which I know nothing, so it literally took 7 hours of Googling and writing and re-writing and checking my facts to do the submission which had to be handed in by Wednesday.

Monday the Yale engineer was coming to my parents’ house about the lock, so I had to be there to see to him as my parents simply can’t cope.  While I was waiting for him to arrive I made them some mushroom soup to go in the freezer and did some paperwork.  I then went into town to have new keys cut for the new lock, then walked the dog, went to see my neighbour with the cancer’s daughter to check how she was doing and finally got home, on my knees with exhaustion, at 4pm.

Tuesday my parents, 2 neighbours, myself and the dog had arranged to go up the Lakes for lunch which sounds lovely but was hard work.  I’d woken that morning with a stonking bad head which never let up all day but I still had to get Mum out of the house and into the car, do all the driving, get Mum out of the car and into her wheelchair (in the pissing rain and howling gale courtesy of Storm Ophelia) and seated at the hotel, take her to the loo mid-meal (which meant mine went cold), get her back in the car, back into the house, her shoes off and her slippers on, a brew made for them both and all the while keeping an eye on my Dad and looking after the dog who then had to be walked (in the storm) on the way home.  That night I had a small seizure/mast cell reaction and knew that if something doesn’t change, and soon, my health could get seriously scary.

Weds I woke at 6am feeling so MEish I felt like I’d been run over by a bus.  There was a mix-up with my dog walkers (one of whom is also my cleaner) and both turned up at 9am.  So the actual dog walker took Bertie while the cleaner sayed on to clean the house, which was due to be done that afternoon.  Usually I spend an hour tidying up before she gets here but of course I wasn’t expecting her and the place looked like I’d been burgled, so instead of crawling back into bed which is what I needed to do I started to sort the house out (she can’t clean if there are 20 dirty dishes on the kitchen worktops, photos spread out on the lounge room carpet and no fresh sheets to put on the bed).  That night was camera club and there was a hand-in for our first print competition, so I also had three A3 size photos to print off and mount.  Then I walked the dog, did the Tesco shopping for myself and my parents,  had something to eat, got changed and before I knew it it was 6pm and time to leave for town.  I seriously felt like road kill and have absolutely no recollection of the drive home.

It’s now 5 days in to my hols and today is the first day I have been able to spend the morning in my pjs in bed resting (well, inbetween putting my groceries away which were delivered at 9am, making my lunch, taking the dog out, making my dinner and tidying up afterwards).

I feel hard done by and want to shout to the world DO YOU KNOW HOW HARD MY FUCKING LIFE IS????? not that anyone would care.

Being sick is a thankless task and no-one realizes how difficult our days are, not just physically but mentally and emotionally.  Being a Carer is also a thankless task and no-one realizes just how much stress and work is involved in looking after a sick relative and their home.  The two together just feels like too much some days.

I feel like I should be apologising for being miserable lately, then get angry at myself for thinking like that.  I’m bloody well entitled to feel however I feel and shouldn’t feel pressured into pretending to be perky and upbeat every second of every day.  Yes my life could be harder (and has been).  I could still be totally bedridden, I could be begging on the streets in India or living in war torn Syria, but just because I’m not doesn’t make my situation any easier to cope with — not just at the moment anyhow.  I honestly think if just one more thing goes wrong or gets added to my plate it will be the straw that breaks the camel’s back and I’ll just collapse in a heap on the kitchen floor sobbing snotty tears onto the lino.

I need a break.  A proper break.  Away from the dog, my home and my parents.  Somewhere pretty and tranquil and restful (not a hotel full of 100 other boisterous guests).  But I can’t afford one and even if I could who would have Bertie?  Wherever I was I’d still have to drive to get there, cook (as eating out every day for a fortnight would cause me all sorts of histamine nightmares) and I’d still have to do laundry as I don’t possess 14 pairs of undies or socks.  So even going away somewhere seems like hard work and not really worth the effort.  I feel alarmingly trapped in a situation from which it seems there is no rest or reprieve.

I know that if I get the chance to properly rest and my hormones settle down from their current warp 10 status I’ll get my umpf back, but today I just feel like a rat on a treadmill and my little legs are tired.

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Weekly roundup

I started a two week staycation yesterday, whoop whoop 🙂  I am so exhausted I have no idea how I’ve kept functioning and the thought of not thinking about anyone but myself for a while is heavenly.  This week, though, has been mental as I’ve tried to get on top of all the outstanding jobs so that I can take some time off with a clear conscience.

After 10 days of faffing about with Yale customer services over my parents’ front door lock and getting nowhere, I finally snapped and at 9pm Monday night I guessed the email address of the Managing Director of Yale UK and emailed him.  Imagine my shock when I received a reply less than an hour later, telling me he would personally see my issue was sorted the next day.  By 9.15am  Tuesday morning a Manager from Yale had rung me and offered to send an engineer to my parents home to fit a brand new lock with 5 key fobs free of charge (RRP £400).  Result 🙂

The 3rd intercom I bought for their front door also worked like a charm, so I’m hoping that’s their door entry issues finally resolved.

I also chased up the decorators who arrived on Wednesday and were finished by Friday.  The hall and stairs look great and, although they were expensive, they made a fantastic job.  I’m hoping that’s my parents sorted for a bit now (famous last words!).

I found out my 90 year old next door neighbour has lung cancer, so I’m guessing she will never return home from hospital 😦  At least the decision whether or not to contact social services over her care and living conditions is now out of my hands, which is a weight off my mind.  Her daughter, who lives 300 miles away, is currently staying in the house and has caught 4 mice in the kitchen, so at least she knows I wasn’t exaggerating when I said there was a rodent problem!

Our village discovered this week that plans have been put forward for a development of 10 detached 4 bedroom houses with double garages on a field only yards from my cottage which currently has a stunning view of the Pennine fells.  There is no identified housing need here, we have no facilities (shop, school, pub, post office, garage), the 2 local primary schools are full, ditto the dentists and doctors, and there is no public transport or employment beyond minimum wage.  There is only supposed to be housing built on green fields where there is an identified local housing need, so now we’re all busy putting together objections to the proposals.  There is a ridiculous scramble to build houses here in the UK and planning policy just seems to be ignored.  Rather than build inappropriate houses on land used for agriculture (what are we all going to eat when Brexit happens and food imports are restricted?!) I think the Government needs to look more at the sustainability of a tiddly little island with finite land mass and whose population is expanding at a ridiculous rate of knots (which was basically what Brexit was all about if you ask the average Joe in the street and nothing to do with racism or not wanting to trade with Europe).

At 10pm last night I settled down to go to sleep and when I turned off the light I saw pinpricks of flashing light in my vision which, within a few minutes, were a kaleidoscope of zigzag flashing coloured lines.  I was having an aura migraine, so despite being shattered I got up and had a snack as eating often helps to cut it short.  There was a period in my thirties when I had at least 2 aura migraines a month and they would frequently happen in the middle of the night waking me from sleep, then in my forties they almost totally disappeared to be replaced by common migraines, the kind with head pain so severe it feels like rats are gnawing on your brain.  My aura migraines only involve aura – no pain, nausea, nor anything else other than they leave me feeling spaced out and not quite with it.  I only get maybe two a year, there is no warning they are about to happen (unlike my common migraines which have a prodrome phase) and I have no idea what sets them off.  They’re not pleasant but I’d take them over the common migraines any day of the week, not least because they’re pain free and last under an hour unlike the common migraines which are excruciating and can last 4 days.

It was the first Camera club competition of the new season on Wednesday.  I am now in the advanced league with some seriously good photographers, so my hopes of winning anything this year were slim to none.  Imagine, then, my gobsmacked surprise when I came third with my ‘Sunday Worship’ picture and first with my ‘Mural’ 🙂  There are a couple of people in the club who are a bit jealous of my success and I know they were waiting for me to do badly so they could say “yes, it’s a different ball game when you’re with the big boys” and I admit I felt a bit smug that I’d robbed them of that opportunity 😉


If you don’t hear from me this week I’ll be lying in my bed reading a book and pretending I’m on a beach in the South of France.

 

 

 

HIT v MCAD

I often get asked on my blog what the difference is between Histamine Intolerance and Mast Cell Activation Syndrome, whether there is any link between the two and how to tell if you have one or the other (or like me, both!).   The answer is we know very little about Histamine Intolerance, and not a whole lot more about MCAS, and virtually zero about the two conditions in tandem.

I have no medical qualifications and am not an expert in either disease, so I can only write about my own experience and what I was told by the Consultant who diagnosed me (arguably the UK’s leading expert on both conditions).  Knowledge is an ever changing thing and what I know now may obviously change in the future as more is discovered about my little understood diseases.

I’m as certain as I can be that I was born with Mast Cell Disease.  I have photos of myself as a very young child where I am flushed bright red and my Mum tells me I was dermographic from a tiny baby.  She didn’t think much of it, however, as she was dermographic and got wheals and hives from tight clothing so she thought it was normal, just as she thought my “double jointedness” was normal and my velvety elastic skin was normal because she too was hypermobile and had stretchy skin.  As far as I’m concerned my MCAD is hereditary and genetic.

Photo of mast cell induced flushing

Flushing as a 3 year old child.

As most of you know, people with Ehlers-Danlos Syndrome are massively more at risk of MCAD than the healthy population but quite why is still a mystery.  There are several theories but they are just that – theories.  The truth is no-one knows.  We also don’t know if MCAD causes EDS, if EDS causes MCAD or if neither causes either and there is another mechanism at play altogether.

My mast cells are activated by all manner of things which the mast cells in a healthy person would rightfully ignore.  Heat, hot water ( very itchy!), cold, cold water (ouch and double ouch!), stress, hormones, some pollens, alcohol, some animals, emotions (particularly excitement), strong winds, exercise, just about all drugs and a host of other situations cause my mast cells to lose the plot, leading from mild problems like nausea or feeling fluey to full blown anaphylaxis and everything inbetween.  But until the age of 44 I could eat whatever I liked and I loved my food.  For the decade I was bedridden with severe M.E., and could do virtually nothing but stare at the ceiling all day, food was my biggest pleasure and I looked forward to mealtimes like an oasis in a burning desert.

Everything changed one day when I was 44 and suddenly started passing out every time I ate.  This was the start of what I discovered was Histamine Intolerance and for me it felt totally separate to my MCAD.  Very little is know about HIT but it’s thought to be caused by a lack of, or badly functioning, enzymes called Diamine Oxidase (DAO) and/or Histamine N-methyltransferase (HNMT).  My HIT was brought under control in about 6 months purely from changing to a low histamine diet, but it’s not ‘cured’.  I still have to maintain a low histamine diet otherwise my symptoms start to creep back and very soon I’m reacting again to everything I put in my mouth (histamine is part of the digestive process for everyone but my poorly enzymes can’t effectively deal with it, so it’s vital I keep my ingested histamine to a minimum).

So, for me, there are some vital differences between my MCAD and my HIT:

  • HIT is only related to what I eat or drink.  MCAD is related to my wider environment, both external (eg pollen) and internal (eg emotions).
  • HIT developed in middle age.  MCAD has been there since birth.
  • HIT causes anaphylaxis-type symptoms only (eg drop in blood pressure, palpitations, nausea, vomiting, fainting, flushing).  MCAD too causes anaphylaxis but also other symptoms (eg itching, dermographia, hives, swelling, sneezing, migraine, pain).
  • The symptoms from my HIT subside within 2 hours of eating.  The symptoms from a mast cell flare can last days, weeks even months – mast cell activation perpetuating mast cell activation and causing a neverending vicious circle.

As far as I know no link has been established between HIT and MCAD.  None of the major papers written by world experts on mast cell disease mention HIT as part of the puzzle which, if HIT were a major cause or perpetuating factor of mast cell degranulation, you would think they would.  I’m not saying the two aren’t connected because I have no clue, but for me they feel like very separate entities and my Consultant diagnoses them as two distinct and separate diseases.  That they both involve histamine is intriguing (though the mechanisms are vastly different), but we have no idea if people with MCAD have a higher incidence of HIT than the general population because no data on this exists.  It may just be coincidence if you have both diseases or it may not.  It may be that mast cells degranulate as part of HIT or it may not (I suspect not but that’s just based on my own experience).

When I’m having a mast cell flare, my HIT does appear to worsen.  However, I personally don’t think this proves a causal link.  What I suspect is happening is that my mast cells are producing excess histamine which my body is already struggling to cope with, so when I eat and even more histamine is produced from the act of digestion it causes overload and I get symptoms after eating that I wouldn’t get if my mast cells were behaving themselves.  So food/digestion isn’t causing mast cell degranulation, which is already happening from other causes, it’s just adding to my body’s histamine excess.  I may, however, be totally wrong.  No-one knows what’s happening yet and it’s not an area anyone is researching as far as I’m aware.

There are sites online which appear to contain authoritative and convincing information linking HIT and MCAD but I can find no research, and therefore facts, on the two conditions and none of the articles I’ve read contain links to research papers.  So as far as I’m concerned information linking the two diseases is based on nothing but speculation and guesswork and you all know how I feel about that 😉

So, that’s my take on HIT and MCAD but of course my experience may be different to yours.  According to my Consultant, you can have MCAD without HIT, you can have HIT without MCAD but you can also, of course, have both.

 

 

Weekly roundup

The first half of the week was dominated by The Curse.  My endo pain was excruciating, I couldn’t eat, couldn’t sleep, had a 3 day migraine and felt bloody awful.  Despite all that, Tuesday night I’d committed to help out at the beginner’s photography class but as I sat there my entire body was tingling and I felt scarily light-headed.  My iron levels, I’m sure, are low again due to me not eating as well as I could with everything that’s gone on with my Mum in the past couple of months.  So on Weds I decided to take 2 sachets of Spatone iron water instead of the usual 1 and within 24 hours I did feel much better 🙂

While I was at the photography class my friend noticed one of the rear tail lights wasn’t working on my car, so on Friday I had to go to Halfords to get it replaced, which cost me £20!   For 2 tiddly little bulbs – daylight bloody robbery.

My parents live in a first floor apartment.   They have an intercom on their front door so that they can see and speak to anyone who arrives at the house, then can open the door remotely with a wireless fob.   Only the day my Mum arrived out of hospital the bloody intercom stopped working *sigh*.  What was needed was a new system, because the handset for the intercom was in the hall and my Mum can now barely get out of her chair so she really needs a handset next to her in the lounge.  No problem, you can get wireless systems these days that I could fit myself…………..which worked everywhere in the house except where my Mum sits in the lounge which was a black hole of interference.  FFS.  I had to send the first one I tried back, and the second one I tried back, so this aft I’m picking up a third one which guarantees to be interference free.  Please God can this one just bloody work?

My Dad takes the fob to open the door with him when he goes out, as he now sometimes struggles to remember the numbers for the doorpad.   This, of course, leaves my Mum with no way of opening the front door if she’s in the house on her own.  No problem,  I thought, I’ll just get a second fob from Yale.  I then spent an hour trying to pair it to the front door without success.  I spent 25 minutes on hold trying to get through to the Yale helpdesk, only to be told they couldn’t help me and I needed to speak to the technical team……who were busy.  A ticket was raised and after I explained it was for my disabled Mother they said they’d get back to me urgently.  A week passed and I heard nothing.  I then shamed them on Facebook and 3 people rang me in the space of an hour!  Apparently since we got our door several years ago the wireless receiver for the fob has changed, so they sent out a new receiver.  Which still didn’t work with the new fob.  I then spent another hour on the phone to Yale who told me to reset everything.  Only then the door wouldn’t work at all.  You couldn’t get in or out and it didn’t lock.  The customer service chap then gave up, said he hadn’t a clue how to fix it and left me to it, saying he’d ring me back on Monday with a solution, leaving my disabled, vulnerable and elderly parents all weekend with a front door which wouldn’t lock or open!!!  I worked out that the reason nothing worked is that we’d faffed on for so long the batteries had died and all was well after new ones were put in (how come I could figure this out and the technical chap from Yale couldn’t?!), but I’m still none the wiser on how to get a 2nd fob to work with the old lock.

Why does every goddamn thing end up being so stressful and exhausting?!  The reviews for the wireless intercom on Amazon were excellent – everyone else just plugged it in and it worked perfectly.  Not for me though, oh no, that would be far too easy :-/  Y’know, when the people around me helpfully suggest I “get more help” in dealing with my parents who the fuck do they think I’m going to employ to do stuff like this?  Or to trail into town because my Mum needs new slippers, only her feet are swollen so she doesn’t know if she needs a size 4 or a size 5, so I have to buy both, take them home, try them on her, then go back into town to return the pair that didn’t fit.  Or the fact that my Dad can’t even cope with deleting photos off his camera so that he can take the memory stick up to the Kodak shop to get printed off, so needed me to help.  Or the decorators who promised to paint my parents’ hall and stairs by the end of September but haven’t yet turned up and needed chasing.  They’re now coming on Weds this week, so muggings here has to go today and take all the pictures down, the shelf off the wall above the radiator and my Mum wants rid of the old Intercom and wires which involves me crawling about in the loft and just hoping I don’t get electrocuted.  I do wish the do-gooders, who have absolutely no clue what’s involved in looking after elderly parents, would shut the fuck up about me needing more help like it’s an achievable solution when it’s nothing of the kind.

Lovely people keep buying me stuff for birthdays and Christmas, only I’m not a ‘stuff’ kind’ve girl and have zero need for most of it.  So I now have several boxes of irrelevant, but brand new and beautiful, shite sitting in the corner of my bedroom.  I had planned on doing a couple of car boots in the summer to get rid,  only a combination of the weather, my own health and my Mum’s health put the kibosh on it.  However there was a table top sale in the next village on Saturday so I loaded up the car, unloaded it the other end, reloaded it 4 hours later and carried it all back into my bedroom, making a lousy £19 in the process.  This morning I’ve woken up with my back, elbows, wrists and knees on fire from all the lifting and I’m not entirely sure the pain is worth the piddling amount of cash I raised 😉

Apologies for such a grumpy roundup, but the truth is I feel grumpy (I think I’m still hormonal).  And tired.  And a bit fed up.  This week I’ve had zero time for myself or to do anything fun and I’m a girl who needs a bit of fun to keep my disposition happy.  I promise to try harder this week 🙂

 

The voice of authority

I’m going to bang on, again, about not believing everything you read online.  I know I’ve talked about it before, several times, but it’s worth repeating because when we’re sick we get desperate and when we’re desperate our logic and reasoning can go out of the window.

Some people write with such conviction and authority that they make you question your own mind.  Even cynical old me sometimes reads a comment or a blog post and thinks “hmmm, maybe I should give up gluten after all” even though I know fine well I don’t have a problem with it.  It’s particularly easy to get sucked in if the article ends with research references, after all the author has obviously based their information on evidence.  Or have they?

I try to be savvy about what I read online and I question everything.  In particular I:

  • Learn about the author.   If they are talking about health issues I need to find out if they are a qualified health professional.  If they are talking about science such as genetics or the basis of disease I find out if they are a qualified scientist or researcher.  If they are offering dietary information I find out if they are a qualified nutritionist.
  • Discover their bias.  I have EDS, MCAD, M.E. and Endometriosis, so when I read about people with similar sounding symptoms to me I automatically think they have what I have.  But here’s the thing: I don’t know them from Adam.  I don’t have access to their medical records.  I don’t know what tests they’ve already had done and which diseases they’ve had ruled out.  I am hugely biased because of my own experience, but my experience may not be someone else’s experience.
  • If they include research references read them.  Their reference may be to one unpublished paper written 50 years ago, in which case it is irrelevant.  Fact is only fact when it is unbiased, been conducted in a controlled environment (ie all participants of the research have the same disease, have been measured against either healthy controls or controls with another disease, and the same testing method has been applied to everyone), has been replicated by another doctor or lab, the outcome has been properly scrutinized by other experts in the field (usually through publication in a medical journal) and, most importantly, the research has been conducted on people not rodents.  If this hasn’t happened it is theory, not fact. I believe with total conviction that I am the best blogger in the whole wide world, but my belief doesn’t make it true 😉
  • If you read an article that you feel resonates with you, google the opposing view.  If you read something on inflammatory foods which you find interesting, try googling “debunking anti-inflammatory diets” and read some of the opposing opinions and more importantly facts (I don’t need to add from reliable, medical sources such as the National Institutes of Health or PubMed).

There are several areas which currently really bother me when it comes to pseudo-science and wild claims, including:

  • Genetics.  People without any scientific or medical background write a lot about genes online and they sound really convincing.  But Dr Afrin in the chapter on genetics in his book on MCAD sums up well our current position when it comes to the world of genetics and it’s this.  “The truth is, we really don’t yet know what 99.99% of this stuff truly means………..Diseases are complex systems, each with many, many interlocking/interacting phenomena and to think one can understand the entire system by knowing merely a few tiny parts of it is the height of naiveté.”  So bear that in mind the next time you read stuff online about c-KIT and Methylation from some convincing author without a single medical or scientific qualification or access to a laboratory let alone human DNA.
  • Food, in particular gluten, dairy, sugar, “plant-based diets” (so long as the plant isn’t wheat, rye or barley) and “anti-inflammatory” foods.  My regular readers will know all the pseudo-scientific crap proliferated online about food and its role in health and disease drives me to absolute distraction.  Please be more savvy about what you read and believe online and balance this with the opposing view before making any decisions about what you eat.  Jeff Schweitzer, Scientist and former White House Senior Policy Analyst with a Ph.D. in neurophysiology, makes some valid points about inflammation in this blog post for example.  I categorically state that my pages about low histamine food on my blog are based on my own experience and not fact.  I actually takes pains to point out there are NO reliable low histamine food lists online or anywhere else and very little research has been conducted on the histamine content of foods.  If a website contains a low histamine food list you need to be asking where the list has come from, the testing which was carried out to determine the level of histamine, by which methods, if it was replicated by another lab and if the data is publically available to view.  Good luck with finding a single website containing this information because I guarantee you it doesn’t exist.

The reason we lose our reason and have a tendency to believe the unbelievable, is that we’re desperate.  Sick, exhausted, baffled, frustrated, angry, lost and/or frightened.  We want someone, anyone, to tell us what’s wrong with us and how to put it right but sadly life isn’t that simple.  Patients online, persuasive and passionate as they may be, don’t know more than the leading doctors and researchers in the world on their chosen subject, however much they delude themselves that they do.  And currently, researchers in the fields of EDS, M.E. and MCAD freely admit they don’t have the answers.  They’ve recently found some interesting things, which may or may not be part of the puzzle of our diseases, and there are exciting developments in the pipeline but no-one has reached any definitive conclusions as yet, hard as that is to hear.

The one thing I know for sure is that the answers to my health issues aren’t going to come from Bob Smith in Nebraska who has no medical or scientific qualifications yet proclaims from his sick bed that he knows something the leading physicians in the world do not and that the answer to all our ills lies in methylation/a paleo diet/an anti-inflammatory diet/ingesting worms/the vagus nerve/[insert your next wildly unproven theory here].  In fact, that Bob Smith even thinks he knows more than the leading brains in the international scientific world is bonkers yet we, the reader, often believe the Bobs of this world – the stranger on the Internet we know absolutely nothing about – without even questioning or challenging them.  But we need to.

 

 

 

Misbehaving Mast Cells

I woke up at the weekend with huge hives on my butt.  I’d been expecting them.  Stress is one of my biggest mast cell mediator triggers and I’ve been under a shed load of stress in recent weeks (the reason why stress causes mast cells to degranulate is briefly covered in my Canary Post).

I received my MCAD diagnosis four years ago now and I’ve come to recognize most of my mast cell triggers.  Some, like pollen release in Spring, I can do nothing about although I take precautions to minimize the effects like wearing sunglasses outdoors and not leaving all my windows wide open, while others like high histamine foods I can more successfully avoid.  Acute stress, like my Mother being suddenly unwell, is something we all have to deal with at some time or another and something we just have to manage as best we can.  While my Mum was hospital this included days where I stayed at home and rested instead of visiting her (the guilt was awful, especially as it meant my poor Dad, who was also exhausted and stressed, had to visit twice in one day), making sure I still ate well (tricky as I can’t just buy a sandwich or meal out, so had to be super organized to always take home-made food with me) and finding ways to chill out despite the chaos (I find listening to talking books relaxing and non-taxing and was something I could do on my long drives to and from the hospital).

There are two types of mast cell activation: acute and chronic.  Acute mediator release is severe and blatantly obvious and thankfully only happens for me when I take certain most drugs.  Chronic mediator release can be much more tricky to detect and it took me a while to know the signs that my mast cells were misbehaving.  Symptoms will be different for all of us, but my tell-tale signs of chronic mediator release are:

  • Insomnia.  I’m exhausted and go to sleep fine, then wake up several times in the night and struggle to get back to sleep.  This is usually accompanied by parasomnias, in my case nightmares, sleep walking and sleep writing.
  • Needing to pee more, particularly during the night.  When my mast cells are calm I never need to get up in the night for a wee, but when they are releasing I get up between 2 and 6 times.
  • Feeling either unnaturally exhausted like I’ve been drugged, or unnaturally hyper.  I prefer the hyper cos I get all sorts of jobs done with energy I don’t usually have 😉
  • Sluggish bowel.  I usually go for a poop every day after breakfast (I know, TMI 😉 ) but when my mast cells are playing up my bowel stops working.  This is the opposite to most people’s experience of diarrhea.
  • Having a bunged up nose.
  • Sneezing for no reason.  And I really mean sneezing, which can go on and on……and on.
  • Back pain, which feels muscular in nature.  One of the biggest surprises of starting a low histamine diet was a reduction in the back pain I’d had since childhood which, when my mast cells are releasing, comes back.
  • Increased joint pain, which again for me feels muscular.  When my mast cells release, the mediators definitely make my collagen more stretchy/weak which makes the ligaments which holds my joints in place painful.
  • Itchy skin and scalp, without a rash.
  • Nausea.
  • Muscle cramps, particularly stomach.
  • Retching/oesophageal spasms, but not vomiting.
  • Increased reflux.
  • Increased cough and chest tightness, which may be due to the increased stomach acid mentioned above, or may not (I don’t have asthma).
  • Itching on the outside of my ears, which sounds trivial but drives me bonkers.
  • And eventually hives on my butt, which are always the last symptom to appear.

The biggest tells for me are the insomnia, peeing during the night and sluggish bowel which are sure signs my mast cells are having a hissy fit.  I can usually identify a reason and do something to change the situation, though there are times they misbehave for no apparent reason which is scary as I then have no way of controlling them.

Triggers will again be different for all of us, but my obvious ones are:

  • Drugs, which as far as my mast cells are concerned are The Devil.
  • Stress.
  • Doing too much.
  • High histamine foods.
  • Menstrual and menopause hormones.
  • Seasons – Autumn being particularly bad (which isn’t mould related because we have mould all year round here) and a warm, sunny Spring usually being particularly good despite the fact I’m allergic to spring pollens (work that one out!).
  • The metal Nickel, which gives me eczema.

I’m sure I probably have other triggers that I haven’t identified, but they can’t be that vital if they’re not causing me easily recognizable issues.  I definitely have a problem with being too hot or cold, and having a hot bath or shower brings me out in an itchy rash but I love my baths and they help my joint and muscular pain, so much so that I’m willing to put up with some transient itching which usually only lasts twenty minutes or so.  Being too cold, on the other hand, makes me feel fluey and unwell and gives me horrendous brain fog which can last until the next day.

Due to my very severe drug allergies I, for the most part, don’t have the option of managing my mast cell disease with medication.  My management strategy therefore consists of:

  • Removing or reducing the trigger, which is sometimes do-able and sometimes not.
  • A wide, balanced, but low histamine, diet which is organic/chemical free whenever possible.  This has been my literal life saver.
  • Taking H2 antihistamines for stomach acid – I’m currently not reacting to Famotidine though this may change in the future.  I have actual panic attacks worrying about becoming allergic to my H2 meds because I have such severe GERD that without them the pain makes me suicidal.
  • Taking small amounts of H1 antihistamine in Spring for hayfever symptoms – I have issues with H1s, sometimes reacting to them and sometimes not, so I avoid unless absolutely necessary.
  • Trying to get enough rest and not over-do it.
  • Trying to do some gentle walking every day, which due to my EDS and M.E. isn’t always possible but is beneficial on many levels when I can manage it.

I look on with envy at people who can tolerate Sodium Chromoglycate, supplements, Benedryl and all the other popular mast cell treatments.  Trust my mast cells to have a particular dislike for the very things which would ultimately lead to their demise – they’re wiley buggers I’ll give them that.

Recognizing my mast cell triggers has given me a feeling that I’m more in control of the situation, though whether this is actually true or not is open for debate 😉  The one thing I’ve discovered about mast cell disease is that it’s an ever changing entity and the whole shebang can alter literally overnight.  So, like any other aspect of life, I just take it one day at a time and am just thankful when I wake up and today is a good day 🙂

 

Weekly roundup

Whoooooooo.  This is the sound of me exhaling, something I haven’t done for a good 2 months.  Finally I’ve been able to have a couple of days at home and actually slob about in my jim jams, well until it’s time to take the furry child out for his afternoon jollies when it’s advisable to put some clothes on – I’d be a Smorgasboard for mozzies, ticks and midges if I sauntered through the woods half naked.

Physically my Mum is coping OK, but it’s her behaviour which is astounding me.  She is no longer drunk and we are having actual conversations in which she is lucid, rational and just plain normal.  And she’s now ringing me too, which she hasn’t done for 4 years as she was too busy getting legless.  I don’t have to think about what time of day it is, because I can speak to her at 7pm at night and she’s just the same as she was at 10am.  When she was drinking she was so smashed she made no sense by evening.  On a purely selfish level it’s wonderful.

But more than that she’s really calm.  My Mum’s always been a feisty person and while she’s been drinking she’s been a mare.  She constantly got frustrated and irritated, particularly with my Dad, and was a real bully at times.  But since coming out of hospital she is weirdly chilled.  She is not snappy and constantly losing her cool, which means visiting isn’t the stressful experience it used to be.

I arranged for her GP to come and check her over and had a quiet word with her about the situation.  My fear is that now Mum is out of hospital, she is not being fussed over by the nurses, she doesn’t have the other patients to chat to, she’s not drinking and is discovering the full extend of her physical limitations and isolation that she will nose dive into severe depression.  She drank because she was unhappy and lonely and that hasn’t gone anywhere.  So the GP is coming back this week to monitor her mental health.  I’m not buying this new, zen persona for a second, though I’m enjoying it while it’s on offer.

My hormones have been rampant this week and I had a very painful ovulation.  My egg release is getting more and more excruciating, I’m assuming because of all the endo-related adhesions on my ovaries,  and for a couple of days I literally couldn’t stand up straight.  I also had a niggly migraine for 4 days which kind’ve spoiled my R&R and my emotions were up and down like a bride’s nightie – one minute tearful, the next wanting to tear someone’s head off.  S’not nice.

Wednesday night was my Camera Club and months ago I’d been roped into doing a demonstration on Photoshop.  I woke that morning with a migraine which got worse as the day progressed, but thankfully it wasn’t bad enough to stop me driving so I soldiered on.  All was fine until mid-way through the workshop when my brain suddenly felt like it had become loose and had gone crashing into the side of my skull.  I seriously thought I was having a stroke.  For a few minutes all thought processes ceased and I literally couldn’t speak, which was proper scary.  Although it settled down, for the next half an hour trying to get my thoughts and words together was tricky and my blood sugar plummeted until my hands were shaking.  These weird vertigo-like episodes are becoming more frequent and I’m not sure if it’s to do with the peri-menopause or is linked to my migraine (I’m thinking more hormones because they often happen without a headache).  I do wish they’d jog on cos they’re starting to freak me out.

Being as though I had a few hours to myself this week I was able to take some photos, which I haven’t had time for in ages.  We have a competition coming up with the theme of ‘Water’, so I decided to try and photograph ‘rain’ which involved being outside in the dark in a flimsy dress and standing under a freezing cold hosepipe when it was only 10C outside.   I won’t be doing that again in a hurry 😉


I also thought I’d try some hi-key photos with the last of the summer flowers from my garden.  These were much more pleasant to do, if a bit of a faff.


On balance it’s not been a bad week all things considered, though my mast cells are certainly on high alert from all the stress and over-exertion of the past few weeks.  I am seriously not sleeping, have nightly anxiety nightmares which leave me drenched in sweat and am getting up in the night for a pee, a sure sign my histamine is rampant.  My back and joints are also painful, which is probably a combination of my hormones, mast cells and the autumnal weather, and my appetite has gone through the roof (definitely menopause related!).  On the plus side I’m starting to feel more like a human being than road kill and at least have clean socks and undies now I’ve had chance to do some laundry 🙂