Odds n Sods

There was no weekly roundup on Sunday because I had a 2 day ovulation-induced migraine. The kind where my entire head felt like it was being excavated from the inside and I didn’t dare move in case I passed out with the pain. I am soooo thankful I only really get them twice a month now (ovulation and menstruation), rather than the twice a week of old, but would be even happier if they’d bugger off altogether.

My mast cells are absolutely bonkers at the mo and I have no idea why.  I was (just about) coping with my reflux by swigging Gaviscon every 2 hours, then my body decided it would ratch up my misery a notch or two and started reacting to that as well.  I am now totally med free and it’s not fun.  I don’t know what’s worse – the pain and inevitable cough, or taking drugs and being anxious every day of my life that today will be the day all hell breaks loose and I’ll have anaphylaxis to them.  At the moment I’m living with the pain and enjoying the mental peace.

Not only are my mast cells very drug twitchy, they are also very digestion twitchy and I’m having some small reactions after I eat.  It’s nothing to do with what I’m eating, as I had freshly cooked Shepherd’s Pie on Monday night and reacted, and had leftover Shepherd’s Pie (technically more histamine loaded than the fresh dish) last night and didn’t react, I think it’s just the mere act of eating and the histamine produced during the digestive process.  It’s been a very long time since I’ve had to put up with reactions after food and I’m unimpressed.com.  I also still have rampant butt hives.

I apologise it’s been so long since I added any new recipes to my blog – I’ve just not been well enough this year to faff on for hours in the kitchen.  But I am hoping to add a couple of quick dishes in the next week or so.

We all cope differently with our really bad patches and I thought I’d list the few things which have always helped me cope with mine:

  • Hot water bottle
  • Warm baths
  • My electric blanket
  • Ice packs
  • TENS machine
  • My pets
  • My parents, my Mum in particular
  • Tea (which I technically shouldn’t be drinking but couldn’t get through the days without – I am British after all ;-) ).
  • Warm milk.  I’m often unable to eat during bad patches, but often find I can keep down a mug of warm milk and the odd Rich Tea biscuit, both of which have saved me from starvation on a number of occasions!

Mind set is also important, and while I can’t say I don’t have times where I fall apart (like, last week!) I do try not to linger there for fear I’ll become clinically depressed.  For the most part I have mantras and thought processes which I return to in times of crisis, including:

  • Acceptance.
    “Jak, you can’t change the situation, so accept it.  The worst that can happen is that you die and the way you feel at the moment that would be OK.”
  • Relax into the symptoms.
    The more I fight the pain, or the spasms, the nausea, or the restlessness the worse they get.  I repeat the mantra above and try to just relax and let the sensations wash over me.
  • Remind yourself how strong you are.
    “Jak, you have lived through this before, many times, and you have survived.”
  • Remind yourself you only have to get through today.
    Don’t worry about how you’ll cope with tomorrow, or next week, or next month.  Today is all that matters – get through minute by minute if that’s what it takes.
  • Distraction.
    I do anything and everything I can to take my mind off my situation.  I watch TV if I’m well enough, I go online if I’m well enough, I crochet if I’m well enough, and if I’m not well enough I listen to a talking book or just lie and focus on the birds singing outside my window and try to identify their different calls.
  • Hope.
    None of us would get through life without hope.  Hope that tomorrow, or next week, or next month, or next year, will be better and it often is.

While I’m wittering on about nothing much in particular, I thought I’d share this recent research on the benefits of milk with you.  As you know, I don’t adhere to the current trend that gluten, grains and dairy are inflammatory and bad for us – just the opposite.  This research paper has demonstrated that people who regularly consume milk have high levels of glutathione in their brains.  Glutathione is often called the “mother of all antioxidants” and is found in every cell in the body.  It protects mitochondria (our energy producing cells) from bacteria and viruses as well as toxins, and being as though our mitochondria are affected in mast cell disease (and possibly M.E.) this can only be a good thing.  I know, however, many of you react to dairy – I’m just lucky that it’s one of my ‘safest’ foods.  In saying all that, the milk I drink is always organic from grass fed cows and this is very important.  As with all research this needs to be replicated and further studies need to be carried out.





Peri-menopause update

As regular readers will know, I’m 47 and in peri-menopause.  At least I thought I was, but something weird is happening and I don’t know what to make of it. My periods have been regular as clockwork my whole life.  Excruciatingly painful, but regular at between 27 and 28 days.  In 2012, however, they started to change.  Just slightly, but change nevertheless.  Here is what my cycle looked like, alternating between 27 and 30 days: MC2012In 2013 things really started to go awry.  My cycle was all over the place, and I had other symptoms of peri-menopause like the occasional day time hot flush, being on fire in bed every night, rage, mood swings and weepiness – it was like puberty all over again, which was shit the first time round and isn’t much better the second.  Here is what my cycle looked like in 2013, with my periods ranging from 21 to 30 days: MC2013From everything I read about peri-menopause online I just expected the symptoms to get worse and worse.  I then expected to start missing periods as my ovaries packed up.  But it hasn’t happened.  Last year saw my periods start to even out again, and in the latter part of the year they were between 25 and 28 days: MC2014And so far this year, the situation has become more bizarre still.  My cycle has been bang on 27 days for the past 3 months – my periods couldn’t get any more regular if they tried: MC2015I have had no more hot flushes, although I still spend all night with my legs on fire and sweating like a roasting hog, plus my mood has stabilized and my rages have mercifully stopped.  What on earth is going on? I surmised that treating my mast cell disease has had an impact on my menopausal symptoms, which is great, but it shouldn’t have any effect on my cycle.  We have a finite number of eggs and once these are all used up our cycles stop.  Nothing we eat or don’t eat can change this fact – once your periods start to change that should be the end of things.  Oh, how I wish it were the end of things and my 4 weekly migraines/nausea/diarrhea and cramps were over with.  I was looking forward to the menopause and now I feel cheated that it may not be happening after all.

Despite extensive Googling I can find no-one of my age who’s periods have started to wane then returned to normal again- it simply doesn’t happen.  I was resigned to being in peri-menopause and relieved that in the next 5 years or so my period nightmare would be ending.  And now I’m all at sea again, feeling out of control and not knowing what on earth is going on.  Just when I think I have a handle on something my body decides to once again take the upper hand and remind me very firmly that it is in charge.  Like I could ever forget!

Long in the tooth

I’m aware I often poo pooh ideas on treating my illnesses and am dismissive of many of the latest health trends.  I may be relatively new to the mast cell disease world but I’m a long-standing veteran of the chronically ill and misunderstood disease world and to be honest I’ve heard it all before.

I’ve lived through several ‘cures’ for ME during the past two decades, including:

  • Treatment for low blood volume (whatever came of that?)
  • Treatment for Chlamydia Pneumonae (which we apparently all had, or not)
  • Treatment with Ampligen (whatever came of that?)
  • Treatment for Candida (which we apparently all had, or not)
  • The discovery of XMRV (or not)
  • Treatment for Cytomegalovirus (which we apparently all had, or not)
  • Treatment of TH2 dominance (whatever came of that?)
  • Treatment for Thyroid issues (which we apparently all had, or not)
  • Treatment with Immunoglobulin (whatever came of that?)
  • Treatment with a gluten-free diet (oh yes my friends, this ‘cure’ is not new)

and various other miracle treatments such as hyperbaric oxygen, DHEA, sublingual B12, magnesium, bee propolis, various herbs such as milk thistle and nettle, high dose vitamin C, fish oils, raw olive oil, Riboos tea, manuka honey, ginko biloba, probiotics, body brushing, cold baths, homeopathy, acupuncture, osteopathy, lymphatic drainage, NADH, L-carnitine, kamboucha tea………… and so on ad nauseum.

I don’t have to spell out that none of this shit works.

Over the years abnormalities have been found in the brains, muscles, hormones and immune system of M.E. patients yet no treatment options have ever been put forward.  That’s because no-one has the faintest clue what causes M.E. or how to make it better.

It amazes me how many people treat theories from “experts” online who aren’t even doctors (and in some cases have zero medical qualifications) as fact.  Or the results from tiddly tiny non-double blind non-randomised research trials involving 8 people which haven’t been replicated, as fact.  These ‘facts’ then spread like wildfire on the internet until 100,000 people are convinced they are……..well, fact.  When they’re nothing of the kind.

We’ve made some great medical strides in the past few years, in particular within the area of genetics, but the whole field is in its infancy.  We don’t know why one person with a gene mutation doesn’t go on to develop a specific disease, but another person without the gene mutation does.  Not everyone who gets breast cancer, for example, has the BRCA gene.  And not everyone with the BRCA gene gets breast cancer.

I’m acutely aware that, even though I’ve been diagnosed with MCAD and HIT, barely anything is currently known about these diseases.  No-one knows what’s really going on or how to fix it, and any truly effective treatment regime is at least a decade away.  Tinkering about with a low histamine diet and mast cell stabilizing drugs in no way addresses how and why the mast cells have gone awry in the first place, and it certainly doesn’t address issues such as drug, heat, cold and chemical reactions.  Sadly it’s currently all we have, in the absence of knowledge about underlying pathology, but it’s not a cure (or even a particularly successful remedy if we’re honest).

I understand the need for hope.  Hope that a cure, or at least an effective treatment, is just around the corner.  That none of you are still going to be sick like me twenty years down the line.  But I kind’ve watch the circus with a sigh and a humongous dollop of scepticism.

When a treatment for a specific disease works, it works – and it works for (just about) everyone.  Immunizations, however much some people are against them, have virtually rid the entire globe of TB, Smallpox, Diptheria and Measles.  Antibiotics, for the majority of the population, work like magic.  Insulin works for diabetics.

If a cure, or proper treatment, existed for M.E. or Mast Cell Disease we’d know about it.  Our gene expressions may all be different, but the fundamental way our bodies work is the same in everyone.  A woman in Africa pops a pain killer and it helps her pain.  A woman in the UK pops a pain killer and it helps her pain.  Even though the African woman might have knee pain and the British woman might have period pain.  That’s because the mechanism of pain is the same in all of us.  And the mechanism of the immune system is, equally, the same in all of us.

I know some of my readers think I’m just not clued up on the latest treatment options, but they’re wrong.  I read a LOT, it’s just that I discard 99% of the information because it’s from highly dubious sources, or hasn’t been corroborated, or isn’t currently a viable treatment option.  You don’t need to be a rocket scientist to know that eating fruits like blueberries and apples, and veg like broccoli and carrots, is good for you in all sorts of ways but will it cure any one of my diseases?  Hell no!  And neither will any of the other currently fashionable ‘cures’ (which, by the way, in 5 years time will be out of fashion and the next fad will have taken their place).

Yes I’m cynical.  Yes I’m jaded.  But it’s based on 20 years experience of being a founding member of the Misunderstood Diseases Club.  There isn’t a single one of my friends with M.E. from the early 1990s who is better.  Some of us have seen improvement over the years, but none of us are back at work or living any kind of normal life, despite in the early days trying every treatment option going.

So if I were to give some unsolicited advice as a Veteran of the disease war it would be this: don’t believe everything you read.


Weekly roundup

The past week has had it’s fair share of ups and down.  I’m still not taking any medication for my GERD, although I’m swigging Gaviscon Advance like it’s water.  The replacement tablet prescribed by my GP wasn’t available anywhere, so she had to change it and even that drug was only available from one pharmacy.  It had to be ordered in, so I’m currently waiting to pick it up.  To be honest, though, I don’t hold out any hope of being able to tolerate it.

I have the worst outbreak of butt hives I’ve had in ages.  It could be that the H2 blockers were doing more than just helping my stomach acid.  Or it could be down to the fact the Birch pollen season has started so my histamine burden is currently way high.  Or it could be down to the emotional stress of the past couple of weeks.  Or a combination of all of the above.

I also have a really sore throat.  Due to my M.E. I had a permanent sore throat for about 15 years, but now no longer suffer.  So I’m wondering if this is M.E. related or whether I have a mid throat infection (it’s much worse on one side than the other, which points more to the infection theory).  It’s impossible to tell if my glands are up – I had Glandular Fever when I was 13 and my glands have been like rock hard golf balls ever since.

My Mum hasn’t been good this week either.  She had to be on 3 different types of antibiotics last month for a chest infection, which has now given her the worst case of thrush I’ve ever seen.  The cream she was given isn’t touching it, so it looks like she might need oral anti-fungals.  But she’s now started coughing again, so is on yet another lot of antibiotics which will make the thrush problem worse.   She’s just so fed up of the whole merry-go-round and seems really down – I don’t blame her.

However, the week hasn’t been all bad – in fact, quite the opposite.  The first week I stopped the H2 blockers for my reflux the pain was like nothing on earth, possibly from rebound acid production.  But this week it’s actually settled down to at least an acceptable level and I no longer feel like I can’t manage it.  I’m not saying it’s any fun, but it’s (kind of) bearable.

The weather has also been great this week.  Still in single figures, but dry and spring-like.  I’ve even managed to potter about in the garden for half an hour most mornings doing a bit of pruning and having a general tidy up after winter.   Being amongst nature in the fresh air never fails to lift my spirits and I sat mesmerized watching some sparrows taking in twigs and straw to my nest boxes.

Having been largely stuck in bed for the past 2 weeks it’s given me the opportunity to start a new blog (my friend K says I’m a blog addict and I need professional help ;-) ).  As many of you know, I have a passion for amateur photography which started 4 years ago when I adopted Bertie.  I’ve never had a lesson in my life and when I first started hadn’t got a clue what I was doing – it took me an entire year just to decipher the manual of my DSLR camera ;-) .   In addition, none the information I read either in books or online seemed aimed at a total beginner and assumed all sorts of knowledge I didn’t possess.  So it’s been a really steep learning curve trying to figure it all out.  To save anyone else going through the same trials I thought I’d start a blog on what I’ve learned and share my experience with others interested in improving their photography skills.  The site is called ‘The Amateur Photographer’ if anyone is interested – it’s best to start at the beginning as the posts all build on each other.

It was Mother’s Day here in the UK last weekend, so I managed to pull myself together enough to take my Mum out for lunch (well, OK, technically my Dad took us all out for lunch as I’m broke and couldn’t afford the bill).  With my stomach problems I thought it would be a nightmare, but actually I coped alright given the circumstances.  My Mum was sent some flowers off my brother, so I thought I’d leave you with a picture of a Ranunculus from the bouquet – isn’t nature wonderful?



I regularly receive comments about Methylation on my blog.  It’s not something I’ve looked into much mainly because:
a) It’s really fucking complicated and I kind’ve get the impression that even the experts are so new to the field they really don’t know what the hell is going on.
b) I feel like it’s just the latest fad in a long line of fads (like Paleo and coconut oil) – I appreciate this will not be a popular view but it’s mine and I’m entitled to it.
c) I can’t afford the testing so have no idea if I have a MTHFR mutation.
d) Even if you have the genetic mutation, it doesn’t mean it’s causing any disease.
e) I already seem to be following the vast majority of the “lifestyle” recommendations in any event.
f) Even if I do have methylation issues I can’t tolerate any of the drugs, and nearly all of the supplements, used to treat it.
Therefore, the whole area seems like a massive waste of my precious energy.

Dr Lynch seems to be the main man when it comes to Methylation issues, so I had a look on his website.  I’m reprinting his protocol below and my response to it:

Here are the common recommendations for supporting those with C677T MTHFR mutations:

  1. Limit ingestion of folic acid in fortified foods as you cannot process folic acid well.
    I don’t eat fortified foods, so that’s OK.
  2. Limit or cease taking supplements or drugs with folic acid in them. Talk with your doctor before stopping.
    I don’t take any supplements, folic acid or otherwise.
  3. Avoid folic acid blocking drugs such as birth control or Methotrexate.
    I don’t do this either.
  4. Avoid drugs which increase homocysteine such as Nitrous Oxide (most used in dentistry)
    Or this.
  5. Avoid antacids as they block absorption of vitamin B12 and other nutrients
    I take antacids because if I don’t I risk getting oesephageal cancer from un-treated GERD.
  6. Begin understanding which of your symptoms may be related to the C677T MTHFR mutation.
    I have so much wrong with me it would be impossible to tell.
  7. Measure homocysteine levels – properly!
    I can’t afford private testing and there’s no way my GP would prescribe it on the NHS as I’m not at risk of vascular disease.
  8. Inform your family members so they can also test for the MTHFR mutation
    The only family member I care about is my Mum and she’s already dying from something else.
  9. Find a doctor who is knowledgeable about MTHFR or is willing to learn
    Dream on.
  10. If you are pregnant, find an OB/GYN or midwife who is knowledgeable about MTHFR.
    Not applicable.
  11. Eliminate Gluten from your diet – especially wheat.
    I am so sick of everyone and his dog telling me not to eat wheat I eat it just to spite people.
  12. Eliminate or reduce Dairy from your diet. If you must have dairy, use Goat milk.
    Ditto with dairy.
  13. Sauna or sweat somehow (epsom salt baths, sports, yoga..) at least once to three times a week.
    I have a mast cell reaction to heat.
  14. Limit intake of processed foods
    Have done this for the past 20 years.
  15. Increase intake of whole foods and home-prepared meals
    And I’ve done this for the past 20 years.
  16. Eat the Rainbow of colors from fruits and vegetables – daily
    And I’ve done this for the past 20 years.
  17. Castor Oil Packs over your abdomen daily during times of pain, soreness, cramps
    Isn’t that a bit………slippery?  I much prefer my hot water bottle ;-)
  18. Vegetable/Fruit Juice Diet with Chia Seeds during times of pain, soreness, cramps
    I drink veg and fruit juice daily.
  19. Limit intake of high methionine-containing foods if homocysteine elevated
    Having looked at the list the top 10 foods are dried egg (which sounds disgusting and I’ve never eaten in my life), seafood (banned on low histamine diet), soy products (also banned on low histamine diet) and meat (I’m pesco-vegetarian).  So I’m doing OK on the worst offenders at any rate.
  20. Coffee Enemas during times of detoxification or pain
    Ewwww!  People with EDS must be very careful of sticking anything up their jacksee due to skin which tears and perforates easily.  Plus any pressure sets off my dermographism causing histamine release, the very thing I’m trying to prevent.
  21. Filter chlorine from your drinking water, shower and bath.
    Like that is going to cure me.
  22. Drink at least two liters of filtered water daily mixed with vitamin C and electrolytes.
    I already drink the water, but eat sugar and copious amounts of salt
    so don’t need electrolytes.
  23. Eat smaller, but more frequent meals, throughout the day with some form of protein.
    I already do this.
  24. Limit protein intake to approximately 0.7 grams protein per kilogram of body weight.
    Hold on, I’ll just get my calculator out and measure every morsel of protein I consume in all of my 6 meals, every day.  Not.
  25. Remove mercury amalgams and root canals with a trained biological dentist.
    I can’t afford to do this, and even if I could I wouldn’t – not without anaesthetic and plenty of pain relief, both of which I’m allergic to.
  26. Avoid cooking, drinking, storing and heating in any type of plastic container.
    I already do this.
  27. Use an air purifier in your home and office
    And I already do this.
  28. Eliminate carpets from your home and install low VOC wood or tile flooring.
    And I’ve already done this.
  29. Eat grass-fed beef, free range, hormone free and antibiotic meats and eggs
    I don’t eat beef, but have eaten organic eggs for 20 years.
  30. Cook with electric stove and oven and remove gas stove and oven.
    I’ve only ever cooked with electric.

Soooo, it seems I’m already following about 80% of the Methylation protocol.  And I still feel like shit.

General Nutrient Recommendations for C677T MTHFR mutations:

  • Methylfolate
    Must admit, never tried it.
  • Methylcobalamin
    Mast cell reaction.
  • Betaine in the form of TMG
    Mast cell reaction.
  • NAC
    Don’t even know what this is.
  • Glutathione
    Mast cell reaction.
  • Pyridoxal-5-phosphate
    Would rather get B6 from my diet (salmon, sweet potatoes, white potatoes) than supplements I would probably react badly to.
  • Riboflavin
    Would rather eat B vitamins in my diet than supplements I would probably react badly to.
  • Curcumin
    Would rather eat turmeric in my diet than supplements I would probably react badly to.
  • Mixed tocopherals (vitamin E)
    Would rather eat vitamin E in my diet than supplements I would probably react badly to.
  • Silymarin (Milk Thistle)
  • Mast cell reaction
    Would rather get Omaga 3 oils from salmon in my diet than supplements I would probably react badly to.
  • Phosphatidylcholine
    Would rather eat eggs in my diet than take supplements I would probably react badly to.
  • Nattokinase
    Soy is not allowed on a low histamine diet.
  • Vitamin C
    If you’re juicing and eating fresh veg and fruit every day you’re already getting vitamin C.
  • Vitamin D3
    I get sunlight on my skin every day of my life and my last Vit D test was fabulous.
  • Comprehensive multivitamin/multimineral
    Why, if you’re already eating super well and taking Vits B, C, D and Omega oils from all the above supplements?
  • Probiotics
    Not allowed on a low histamine diet.

There’s also a small list of drugs to try, but with my allergy history I wouldn’t touch any of them with a 10 foot pole.

I know this area is a big deal for some of you and if it’s working, and you can afford testing and tolerate the recommended supplements, I’m genuinely happy for you.  But I can’t afford to get tested and having looked at the protocol I’m already inadvertently following most of it and it’s not helping me one iota.

Whether or not I under or over-methylate has no bearing whatsoever on my Ehlers-Danlos.  And as Dr Sam writes on Dr Lynch’s site: “Remember high histamine can be caused by poor diet and/or low levels of DAO in the gut or low levels of other histamine degrading enzymes in the blood which are entirely separate from methylation.”  Thank God someone is seeing the bigger picture.  My twitchy mast cells are caused by my Ehlers-Danlos (faulty collagen) and my problems with food are caused by low DAO (probably genetic), neither of which is affected by Methylation as far as I’m aware.

We’re all different, and that’s allowed.

The Reality of Chronic Illness

I’ve had a huge response to my last post.  I’d like to say a big thank you to everyone who has commented and for all your thoughts, hugs and prayers – they mean more than you can ever know.

As regular readers of my blog will know, I just tell it like it is.  Most of the time I manage to get through the days with at least some level of joy and gratitude.  But some times, I do not.  There are times when I’m just so flippin tired of the constant fight that I wonder what on earth the point to life is.  It’s one thing being sick for a month or two, or even a year or two, but I’ve lived with daily pain for 36 years now and some days I’ve just had enough.  I haven’t slept the night through for 21 years.  There is not a day which goes by where I don’t feel nauseous or dizzy.  I never have a clear head.  I am exhausted beyond any healthy person’s comprehension every nano second of every day.

I can’t eat what I want.  I can’t do what I want. I am without care of any kind.  I’m lonely.  I’m skint.  And it’s been like this for over two decades.

It’s absolutely normal to feel depressed at times.  I’ve never understood the insistence to be positive and perky every second of your life.  No offence to my American friends, but this pressure to never feel down and to always see the silver lining seems to be particularly strong in the States.  We Brits are much more realistic about life and are pretty good at moaning ;-) .  Holding everything in and pretending that all is fine when it clearly is not can lead to serious depression.

Someone commented that there are people worse off than me.  People with cancer or ALS.  I’m not sure that’s true.  I’ve had 3 Aunts and 1 Uncle die of cancer in recent years, so I know what they went through, but they were sick for 3 years then died.  Other people are sick for a few years then recover.  They don’t suffer with cancer for 40 years.  One of my neighbours lost half his leg, 8 fingers, half his nose and half his ear due to frost bite following a climbing accident.  But he’s not sick,  still works full time, has 4 kids, runs every day and still mountain climbs.  He has not had to spend a large portion of every one of the past 7,665 days in bed like me.  Another of my neighbours is in the end stages of Parkinsons Disease, a terrible illness which is robbing him of every bodily function.  But he’s 89 years old and until 5 years ago he was still digging the garden and driving his car having never suffered a days illness in his life.  He has children and grandchildren and a loving wife of 60 odd years.  He has memories of travels and adventures and a life well lived.  I wish I were that fortunate.

I’m sorry I scared some people talking about suicide.  But at times I do feel suicidal and I think, given my circumstances, that’s natural.  Fairly early on in my blogging I wrote a post about it which you can read here.  I also wrote a post about people’s differing attitudes to their circumstances which you can read here.  I might feel differently about my situation if I lived with a loving partner, or was being cared for by my parents, or had no money worries.  But I’m not in that position and my life is one relentless, exhausting struggle just to eat, bathe and get through the day.  You can’t know how you would cope living someone else’s life until you’ve walked a mile in their shoes.

I’m not going to apologise for writing yet another downbeat post.  This is my current reality.  Tomorrow, or next week, or next month, may be different but today sucks.  And to any of my readers whose today also sucks I send big hugs.  We’ll get through it together.

When Fears Come True

As anyone who’s read my blog will know, my biggest mast cell reaction is to drugs.  There is barely a single drug I can tolerate: from aspirin to valium, anti-emetics to steroids I’ve had anaphylactoid reactions to them all (if you want to know what my reactions are like read this post).

Due to my mast cell disease, and a hiatal hernia due to my Ehlers-Danlos, I have rampant GERD.  And I mean rampant.  To the point where the acid burns my oesophagus and causes ulcers, and I inhale it into my lungs and give myself walking pneumonia.  The pain of severe GERD is like nothing on earth.  To be burned with acid from the inside is not fun.  The pain in my back gets so bad I can’t sit upright and it radiates down both arms to my elbows.  My throat and mouth also become burned and the taste is so vile I can barely stand it.  I feel like my entire upper torso is on fire.  And before anyone tells me to stop eating gluten or dairy because it cured their reflux PLEASE don’t – I’m liable to tell you to shut the fuck up, you have been warned.  Not eating wheat will not cure my hernia, which is due to shitty collagen rendering my oesophageal sphincter defunct.

To control my reflux I have been able to take Cimetidine, an H2 antihistamine which blocks stomach acid.  I tried Zantac, the first drug of choice, but it didn’t agree with me and gave me awful brain fog (worse than usual, and it’s already bad enough).  But I’ve been taking 4 tablets of Cimetidine daily for the past 18 months and it’s kep the GERD at bay.  Until this week.

I knew that, eventually, I’d become allergic to the Cimetidine.  It’s been my biggest fear.  I become allergic to any drug I take over the long term.

I’ve been having small reactions after taking the Cimetidine for about a month now (pins & needles in my bum, crampy stomach) and just ignoring them, hoping they’d go away.  They didn’t.  They escalated on Monday to an all out anaphylactic reaction, with a heart rate of 125 and a bp of 145/75 (my usual bp is 118/55).  I gave it a miss for a couple of days, hoping things would calm down but no such luck.  I can no longer take the Cimetidine.

Ages ago, my GP had given me a Proton Pump Inhibitor to try – Omeprazole.  I still had it, and it was still in date, so this morning I gave it a try.  Just a teeny tiny bit on the end of my tongue – what harm could that do?  Anaphylactic reaction is the harm that could do, with sky high bp and heart rate, and cheeks so red I could light up my entire village (I took it 4 hours ago and am still flushed).  Fuck.

As I’ve had no drugs all week, my GERD has had a field day.  The pain is worse than anything I’ve ever had to endure.  I can’t live with it.  Suicidal thoughts plague my every waking moment.

I’m speaking to my GP in the morning, but realistically what can she do if I can’t take any acid reducing medication?  I swill Gaviscon like it’s water and it does not help one iota.

I’m super depressed as you can imagine.  I’ve lived with this shit for over 20 years and I’m just exhausted from it all.  I live every day with the fear of what I’ll react to next and it’s just so tiring.  I’m always allergic to anything which might help me.

Needless to say I won’t be writing much on here until I can get things under control.  I tend to just go into myself when I’m going through a bad patch and don’t want to to be online and ‘chatty’.  And it’s not in my nature to come online and whinge – it doesn’t help me and you all have your own woes.  So this is me saying you might not hear from me for a bit.  I’ll be back when I no longer feel like slitting my wrists in the bath (a thought which enters my head on an hourly basis).

Jak x

p.s. before I go, I’d planned on sharing a book with you in my next post, so I’ll share it in this one instead.  ‘Girl in the Dark’ by Anna Lyndsey is the true story of a woman who suddenly becomes allergic to light.  Not just sunlight, all light, and lives in a completely dark room.  No laptop, no TV, no sunlight, no moonlight, no fresh air from an open window………..just total blackness.  It’s recently been serialized on BBC radio for those who can listen online http://www.bbc.co.uk/programmes/b0540b3h but is also available to buy in hardback or Kindle download from Amazon.  There’s always someone worse off than you……