Healthcare gender bias

I’ve written about this subject before but it still floors me when I read about the experience of women within the health-care system and the readiness of Consultants to attribute women’s symptoms to emotional or psychological factors.  I know some men, particularly those with M.E., who have had their symptoms put down to mental health issues but on the whole they are ten times more likely to be given a biological diagnosis and I haven’t heard of a man yet whose physical ill-health has been put down to hysteria or issues with their penis (I have heard, however, of women who have been told their womb is to blame!).

A friend posted a link to an excellent article on the CNN website about POTS which states that 80% of sufferers are women, a statistic which is largely mirrored in co-morbid conditions like hEDS, M.E., MCAS and auto-immune disorders such as Lupus.  The largest survey on POTS to date found that 75% of female patients were initially told their symptoms were psychological and a quarter of those were treated for mental health conditions they didn’t have.

What shocked me to the core in the article, however, was the testimony of female sufferers.  One was told by her Cardiologist “it’s a women’s thing” and her symptoms were all in her head (what fucking century are we living in?).  Another that “you’re just doing this because you’re 31 and don’t have babies yet”.  Would a man ever be told he was fainting every time he stood up because he was 31 and not yet a Dad?  Hell no!

Like many of us, the answer to their perplexing symptoms was found by the patients themselves who turned to Doctor Google.  If we non-medics can find the answer online just by typing our symptoms into a search box why can’t trained medical professionals?  It’s because, on the whole, they’re not looking for physical reasons.  We’re women, nothing is showing up on standard blood tests, therefore we’re making it up to gain attention because we’re lonely and hysterical.  It makes me LIVID.

I was talking to my best mate the other week and she was saying that she takes her partner in to medical appointments with her because she is taken more seriously if accompanied by a man.  She just has to grit her teeth when the Doctor speaks to him and not to her as the 42 year old degree educated fully qualified Civil Engineer patient.

Where has this bias come from?  I’m sure if I researched it there would be all sorts of conclusions drawn by people much cleverer than me, but I believe it’s simply that men and women are different and, because men have ruled the world since time immemorial they think that everyone should be like them, and if you’re not like them you’re somehow wrong, inferior or bonkers.  I’ll never forget watching a documentary about a trans-gender man who transitioned into a woman.  He naturally had to take female hormones and spent 3 months crying at the drop of a hat.  He said he had no idea that women go around feeling this emotionally raw every day of their lives and he hadn’t even experienced periods, the menopause or pregnancy!

Women’s hormones, on the whole, make us more emotional than men – it’s just a fact of life.  We are not mental or hysterical, we’re just more emotionally expressive than the other sex.  It’s normal, men need to fucking get over it and women need to stop apologising for it.  Do you hear that ladies?  We need to STOP apologising for it!

Britain had a famous female Prime Minister who only rose to the stop of the political ladder by acting more like a man than any of the men and this seems to be the case for many successful females.  But we’re not men!  We’re women and we should be allowed to act like women, hormones, emotions and all.  And if we are more prone to certain diseases because of our gender then that needs to be researched.  FFS we make up more than half the world’s population yet diseases which predominantly affect us are almost totally ignored.

Women’s issues across the board are ignored.  When I first started peri-menopause 6 years ago I went to see my female GP who told me it would all be over with in 2 years because that’s what she’d been taught in medical school by, I assume, male professors.  You only have to spend 3 seconds on Google to know this is bullshit and not born out by the experience of most women, yet the myth is still being perpetuated in medical school because researchers can’t be bothered to look at the reality.  Periods, pregnancy and menopause are natural after all and we women need to stop whining about it.  How I’d love a man to pass a bowling ball through his arse and then tell me it’s natural and he needs to stop whining, even though his backside has been torn to bits to the point where sitting down is torture and he poos every time he sneezes for the rest of his life.

As you can probably tell, the appalling way women’s health is often viewed within the medical profession makes my blood boil yet my whole life I have not challenged it.  I’ve come out of medical appointments and cried at the way I’ve been treated yet I have said nothing and done nothing.  This has to stop.  We need to speak up.  We need to complain about our treatment.  We need to confront sexism.  But more importantly we need to stop apologising for being female and having different experiences to men.

 

 

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Weekly roundup

All my wisdom teeth came through in my early twenties and have never caused me any bother, but recently one of the bottom ones has been painful and when I woke on Tuesday morning with a really sore throat and swollen glands on the same side I thought I’d better get it checked by the dentist.  Thankfully there was no abscess or infection but the gum was severely inflamed and needed to be packed with an anti-septic and anti-inflamatory dressing.  It tasted vile and was so minty hot my mouth was on fire for the rest of the night but it helped and that’s the main thing.  As you all know, though, I’m flaring at the mo and I did have a small reaction driving home in the car, which I now know was nothing to do with the drugs in the dressing and more likely due to simple exhaustion and the stress of the procedure.

I continued to feel unwell on Wednesday and was very MEish.  The Dentist said the sore throat was nothing to do with my tooth so I probably had an unconnected throat infection from which I’m still suffering, and for the first time in ages I was on the verge of collapse by lunchtime so had to go back to bed.  I felt both sick and ravenously hungry at the same time, which is usually the warning sign I’m getting a migraine, and sure enough by 8pm my noggin was thumping and the pain kept me awake half the night.

Thursday I’d arranged to meet my best mate for lunch but when I got up at 6am my head was still banging and I wasn’t well enough to go, so I risked taking some junior ibuprofen suspension which calmed the pain down and allowed me to drive.  I’m glad I managed to go despite feeling like a limp lettuce because I really enjoyed the goss and it was nice to be out of the house.

That night I was kept awake half the night with tummy ache which felt suspiciously like period pain.  I was only on day 16 of my cycle, though, so dismissed the notion and thought instead that maybe it was just collicky pain to which I’m prone.  Nope, it actually was my period – at least I think it’s my period.  I have all the symptoms: backache, period pain, nausea, migraine, exhaustion………… but no bleeding, just thick brown gunk.  Apparently this can happen when there aren’t enough hormones to cause thickening of the womb lining, which I’m hoping is a good sign that my peri-menopause is moving on towards actual menopause, but it’s cruely ironic to have looked forward to my bleeding stopping only to still have every period related symptom known to man. FFS!  I’m also monumentally unimpressed at having a ‘period’ only 2½ weeks since the last one.  Pleeeeaaaase God make it stop.

Friday I was back at the Dentist.  I’d had the appt booked for ages as it was just for a routine check-up but my gum was still inflamed so he put another dressed on and we’ll see if that finally does the trick.  This time I had no reaction at all, which is how I know my first reaction was nothing to do with the dressing.  Friday evening I started with another migraine (I always have migraines during my period) so was, for the third night running, awake half the night in pain. This week has been hard work.

As if all that wasn’t enough to be dealing with, I woke up Weds morning with a painful index finger on my right hand – I have no fucking clue why.  I already have my right thumb and wrist strapped up and now I’ve had to buddy tape my finger, which means using the laptop is tortuous.  My one distraction from all my woes is my photography, however using my editing tablet is aggravating the pain so I know I should be taking a break but I honestly think I’d go nuts, so I’m carrying on regardless and probably making the situation worse.  Here is an owl we saw at the flying display I went to a couple of weeks ago, which is still one of the best days of my life:

The good news is that my Mum had her latest test results back and her anaemia has improved to within the normal range.  She also had a bone density scan, having been diagnosed with osteoporosis 23 years ago and never having had a scan since, which shows her bones are much better than they used to be and she is now classed as having osteopenia rather than osteoporosis.  She was on bisphosphonate tablets for two decades then switched to a 3 monthly injection, but is now deemed to no longer need them and just has to take calcium & vitamin D supplements.  Maybe if she’d been monitored and had regular scans she might have been able to come off them years ago :-/  I was told off by a GP who used to follow my blog when I said that Doctors don’t monitor their patients properly but from my experience they absolutely do not.  It was my Mum who requested the scan – if it had been left up to her GP she wouldn’t have had one as long as she lived and carried on taking drugs she no longer needed.

 

Changing the rhetoric

Since the release of the exceptional docu-film Unrest by Jen Brea it feels like there has been a sea-change in the way the world views M.E.  It’s been a very, very long time coming and I’m trying to be optimistic and excited about our future but if I’m honest I’m still worried.  Worried that we, the patients, are staying buried in our past and not allowing ourselves to move on from the pain and anger of our disease’s history, understandable and justifiable as it may be (trust me when I say that there’s no-one more angry than me at being told I might die from a disease deemed to be “all in my head” and then left to live alone with it for the next 25 years without treatment, health or social care).

Every single article, interview or news piece done on M.E. says something like “M.E. which used to be called Yuppie Flu” or “M.E., which some doctors don’t believe exists” or “M.E. which some people think is just laziness” and it’s driving me insane, as well as killing the momentum we’ve spent 50 years building.

Yes, a proportion of young, upwardly mobile professionals developed M.E. in the late 1980s and because they were intelligent, confident, articulate adults and spoke out in the media  their voice became synonymous with the disease, but let’s remember there were tens of thousands of poor people getting M.E. too who the media ignored and when Thatcherism faded in the 1990s Bollinger, shoulder pads and the Yuppies faded alongside her.  Enough with the quarter-of-a-century-old Yuppie Flu references which were completely eroneous to start with.  The next time anyone in the M.E. world is asked to do an interview  they should only agree so long as that skewed rubbish is never mentioned.

The same principle applies to depression, laziness or anything to do with psychology.  The World Health Organization classifies M.E. as a neurological disease and that is the end of that.  Every time a journalist, interviewer or article makes mention of depression or disbelief it only serves to re-enforce both concepts.  You can almost hear the reader or viewer thinking there’s no smoke without fire, so let’s put the damned fire out.  Let’s only agree to do interviews with the promise beforehand that no mention is made of depression, psychology, “tiredness” or laziness because we all know that these issues have nothing whatsoever to do with our illness.   Even if having M.E. has made you depressed (and why wouldn’t it, I know it has me at times) let’s not mention it, because the second we do it becomes the hook on which our disease is hung.

We need to move forward now.  We need to stop yakking about Yuppies and disbelieving Doctors and instead change the rhetoric.  Re-enforce the fact that M.E. has nothing to do with being “tired” and everything to do with being ill.  Make mention of the brilliant global research which is finding all sorts of abnormalities.  Stop the emphasis on chronic fatigue and put it back on Post Exertional Malaise where it belongs, and tell the world the reality of living with this devastating, life altering disease – the vomiting, seizures, crawling up the stairs on all fours, lying in darkened rooms, fiery pain, dementia-like brain fog and catastrophic malfunctioning of every organ the body possesses to the point where you actually fear you’re going to die.

Let’s all refuse to re-enforce the lies and instead speak only our truth.

Flares

Having been diagnosed with both Histamine Intolerance (HIT) and Mast Cell Activation Syndrome (MCAS) it’s often hard to know when I have a symptom flare who the culprit is.  Acute reactions are easy – if I take a drug and 20 minutes later get a whoosh in my head, my heart starts hammering and my face goes beetroot red my mast cells are having a hissy fit, and if the same thing happens 5 minutes after I’ve eaten I know it’s my HIT at play, but the waters become muddier when I feel insidiously and chronically unwell as is the case at the moment.

I’ve talked about this before, but for the benefit of people new to my blog these are the signs that my histamine levels are high:

  • Feeling exhausted but wired and unable to relax.
  • Insomnia, either difficulty getting off to sleep or waking during the night – usually around 2 or 3am.
  • Increased urination, especially having to get up during the night to pee.
  • Sluggish bowel.  I usually poop every morning after breakfast but this becomes every other day and at random times, even during the  night.
  • Flushing and feeling hot after eating.
  • Ligaments which injure super easily and refuse to heal.
  • Back pain which is muscular in nature.
  • Muscle spasms, particularly in the gut.
  • Nausea without vomiting.
  • Itchy skin and scalp.
  • Sore throat.
  • Oesophageal spasms which cause retching.
  • Sneezing, particularly on waking.
  • Increased or decreased energy.
  • Increased or decreased appetite.
  • And my old friend hives.

I am currently having one such flare of symptoms and looking back over the past couple of months I suppose I can see why.

  • My cleaner has been off so I’ve been doing way more in the house than normal.
  • My dog walker was also off for 2 weeks so I’ve had to take Bertie out more.
  • I split my lip open and had stitches.  There’s the shock of the event, the pain, the physical trauma and the fact my poorly immune system had to rally into action.
  • I subluxed my thumb joint which has led to ligament trauma, inflammation and ongoing pain.
  • I have a throat infection.
  • I had to have an emergency dental visit yesterday due to acute inflammation of one of my wisdom teeth.
  • And of course all the usual peri-menopause and endometriosis related gubbins.

It’s no surprise I’m not feeling great.

It all starts a vicious cycle though.  I am way too exhausted to cook, and feel nauseous much of the time, so end up eating a less than low histamine and less than ideal diet.  Add to this raging hormones and ridiculous food cravings and I know my ingested histamine is high.

Wounds and trauma stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells, which release inflammatory and other mediators, which stimulate mast cells…………  In a healthy person this cycle would happen once and then stop, whereas in MCAS patients the hand-brake appears to be faulty and we just keep rolling down the hill.

Having to do more physical activity than I know is good for me has made me really tired, but due to my high histamine levels I have insomnia and am getting up in the night to pee often several times.  This makes me even more exhausted and I gradually get more and more run down and open to opportunistic viruses and infections.

It’s incredibly hard to break the cycle.  I know I should probably have some enforced bed rest, but when your histamine levels are high and you feel really wired it’s soooo hard to just lie there doing nothing!  But it does usually help, so now my cleaner is (hopefully) back and my dog walker has returned from her hols I will have to force myself to chill, use my super powers to resist my hormone-related food cravings and give my immune system a chance to switch off.

Weekly roundup

I have been so naughty this week.  I’ve got the most intense cravings going on, so I caved and have chomped my way through a whole tube of sour cream ‘n onion Pringles, a family bag of Starburst, a family bag of Wine Gums, a frozen mushroom pizza (my first bought tomato-based pizza in 5 years) and a small tub of Salted Caramel Haazen Dazs ice cream.  I’m sure none of that has done my histamine bucket any favours and I’ve probably gained 5lbs but I swear my hormones thanked me and I loved every second of my binge 😉  Fuck it, you only live once and it’s not like the sky fell in or anything.

Tuesday night was the last evening of our beginner’s photography class so I hauled my exhausted arse along to show support even though I wasn’t lecturing.

Wednesday I decided to spend half an hour in a wildflower meadow taking selfies for a photo I had in my head.  Stupid here forgot to put her insect repellent on though and I’ve spent the days since covered in huge blistery, itchy bites.  The photo turned out OK though so that’s the main thing 😀

After having 6 weeks off to nurse her Father who has now passed away, my cleaner didn’t come again this week as her daughter had a hospital appointment.  I know they’re all legitimate excuses but when is she going to realize that the reason I have help in the house is that I‘m sick?!  If she worked on the tills in Tesco she wouldn’t have been given 6 weeks off, dying Dad or no dying Dad.  When my Nan passed away my Mum had one day off her 40 hour a week job for the funeral and that was that, even though she’d been taking turns to sleep on my Nan’s couch for 3 months beforehand to nurse her.  We all have stuff going on in our lives but the world doesn’t stop turning and we still have to work – she’s only here 3 hours a week for heaven’s sake.  Maybe that sounds harsh, but including holidays she’s had nearly 7 months off in the last 18 during which time I’ve lived in a dirty house and slept in a dirty bed and the reason my hand is currently killing me is because I tried to change the bed sheets myself in her absence.

Speaking of which, the only solution I could come up with to help my CMC joint was to tape my hand.  I found some YouTube videos showing the best way to go about it which I modified to cover all the areas which are sore, but I have to admit it’s not helped so I think I’m going to have to see the Doctor *sigh*.

Friday I had the plumber here servicing the gas boiler and fire and fitting a thermostatic valve to one of my radiators.  I also had the builder here quoting to re-grout my patio.  My house needs some expensive jobs doing, like a new front door, but as I’d love to move to a one story house in the not too distant future I’m hugely reluctant to spend yet more money on this one.  I’ve been looking for a new home for a year now though and had no luck so I could still be here in 5 years time and it’s difficult to know what to do.

Today is Father’s Day (why is there no Daughter’s Day?!) so I’m going out to lunch with the folks even though I feel rubbish and am absolutely wiped.  I know I should be grateful that I’m well enough to go out after spending years bedridden, but it’s not like I’m going to enjoy it – my Dad is loopy loo and my Mum will start off whiny and snappy (there is always something wrong with the food) then get increasingly giggly and stupid the more wine she drinks – so to be fair I’d rather be stopping in bed cuddled up to Bert and working on my photos.  Neither of my brothers has ever taken my Dad out on Father’s Day even though he’s their biological Father and not mine.  Why does this stuff constantly fall on my shoulders just because I’m single?

As you can probably tell I’m hormonal, crabby and not feeling well so I’ll shut up now, go and get some breakfast and try to find my happy head.  Onwards and upwards!

Mast Cell Triggers

MCAS is a very individual disease.  We will all react to different things and to differing degrees  but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

My reactions take on several forms:

  • Cutaneous: flushing, itching, hives, blisters, rashes.
  • Brain: migraines, brain fog, seizures, memory problems, altered consciousness, speech problems.
  • Gut: nausea, retching, oesophageal spasms, increased urination, constipation, diarrhea, gut pain and cramping.
  • Ocular-nasal: sneezing, stuffiness, runny nose, nasal and eye itching, eye redness & watering, eye pain and soreness, light sensitivity.
  • Cardio-vascular: palpitations, chest pain, breathing problems, blood pressure rises and falls, vertigo, dysautonomia.
  • Systemic: fatigue, weakness, widespread non-specific pain, feeling fluey, muscle spasms, pins & needles, fight/flight, pacing, anxiety, feelings of doom, insomnia.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time.  As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal!  As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix.  By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions.  And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild.  Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash.  Being unhappy,   particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards.  Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted.  This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish.  Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted.  This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know.  From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all.  I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site).  Here is my facial flushing after a drug reaction:

Photo of mast cell induced flushing

Unfortunately the reaction doesn’t stop when the drug is out of my system.  Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle.  My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden.  Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe.  I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate.  I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts.  I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden.  Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie!  My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming.  He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand.  I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness.  I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy.  The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am!  I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se.  I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago.  Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months.  The weird part is, though, that just before I come down with a virus I feel absolutely brilliant.  For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored.   I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all.  The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade.  One of the immunizations was against meningitis and 5 days later I got meningitis!  I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination.  My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life.  Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order.  It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening.  It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay.  However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer.  It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become.  I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences.  Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse.  In fact  I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation.  My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.

 

That’s the bad news, but there is good news too, albeit on a small scale.  Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely.   My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee.  I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever.  So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause.  If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough.  Time will tell.

 

Low patch

On top of my weekly roundup on a Sunday I try and write one blog post a week on a specific topic but the last few weeks I’ve been struggling.  I’m usually a gobby mare who never shuts up but the truth is I’m feeling a bit low at the moment and can’t think of anything to say.

I’ve been lying here pondering what’s really going on and I think I’m just feeling a bit lonely.  As I said in a recent blog post, during the winter everyone else is stuck indoors like me but in the summer it’s very obvious that healthy people are out having fun with their nearest and dearest and the fact I’m imprisoned in bed on my own feeling rubbish really hits home.

I’ve been single now for 10 years and while in many respects I love being on my own the lack of human contact seriously gets me down.  I have not been touched by another person in a decade and we’re simply not meant to live in that kind of isolation.  We have an innate need for physical connection – someone to hug us when we’re upset, someone to hold our hand when we’re frightened, someone to kiss us to share in our happiness.  The absence of that is something you never get used to and can, at times, become an actual physical ache of longing.

It’s bad enough that you have no-one with whom to share your life.  There’s no-one to ring when something great happens, no-one to care for you when you’re injured, no-one to help with chores when you’re exhausted, no-one to discuss Love Island with 😉   But for me the lack of physical contact is the thing which brings me to my knees.

There is no solution either.  I mean, you can pay someone to help with the housework or the garden and I do have my parents and friends I can chat to, but you can’t pay someone to lie and snuggle with you or to sneak up and kiss you on the neck when you’re doing the washing up.   You can’t pay someone to hold your hand while you’re waiting for an MRI scan or to massage your shoulders when you’ve got a migraine coming on.

So I apologise if I’m a bit quiet.  I’ll get over it, it’s not like I have a choice, but just at the mo I’m having a bit of a pity party and the only guests are my rampant hormones which are making me weepy (when are they going to bugger off?!).  I can’t even get drunk and binge on chocolate, which some days is worse than being alone, or dance to It’s My Party And I’ll Cry If I Want To cos my knees are playing up.  Fucking hell my life actually sucks 😀