Tag Archives: Mast Cell Activation Disorder

Weekly roundup

A surprising lack of response about my thoughts on the Persecution of women, which appears to back up my point that we are all so conditioned to it that it’s considered normal.  I am so outraged when I think of what women round the world go through every day of their lives that I want to scream but my anger obviously isn’t massively shared. I wrote about the issue on my Facebook page and barely received a single like or comment. I did, however, have a comment from a man I don’t know from Adam.  He laughed that I’d used the word “persecution” and told me Jews, Blacks and Gays said “hi”.  For a start he doesn’t know my religion and I could be Jewish.  I could also be gay or married to a black man, so his level of assumption was astounding.  And maybe he’s forgetting that half the Jewish race are women, half the black population are women and homosexuality isn’t the sole confine of men.  He then accused me of being sexist because I pointed out that he was male and couldn’t know much about the experiences of women of any race, orientation or religion.   It’s male attitudes like this that have contributed to the persecution of women and he can’t even see it.  When boys  under the age of 6 are routinely taken into the bush or desert to have their penis chopped off without anaesthetic or pain relief and their bum holes stitched up so they can barely poop for the rest of their lives (the girl my parents sponsored in Africa was a victim of female genital mutilation), or when men are routinely sodomised by their wives or parents, or sexually assaulted by some random stranger (as I was at the age of 11), or when they are deemed a criminal and incarcerated for having sex with their girlfriend and getting them pregnant (as many Irish girls were right up until 1996), or when they have acid chucked in their faces, or are stoned, or bricked up behind a wall and left to starve to death for speaking to a girl they like then they can discuss with me how women aren’t persecuted and not until.

On to less upsetting topics.  It was my Dad’s 78th birthday this week and I took him and my Mum out for lunch.  Considering he was planning his Mum’s funeral he had a lovely day and I know how lucky I am that both my parents are still alive, even if some days I do want to strangle my Mother.

My cleaner was on holiday this week so I had to use up precious energy changing my bed and scraping the muck off my floors caused by my furry child.  She is worth every single one of the pounds I pay her because there is no way on earth I’d be able to keep my house nice without her.  She also usually cleans the inside of my car, which I had to do myself because it was going in for its MOT and looked, and smelled, like the bottom of a swamp.  I was flippin crippled for the rest of the day from having to bend to hoover.  My Mum’s cleaner is also on holiday, so not only did I clean my own house I cleaned my parents’ house too which couldn’t really be left because of all the visitors they are having due to arranging the funeral.  Consequently I’ve got nothing else done all week because I’ve been too knackered and in too much pain.

And speaking of pain, since my period ended ten days ago I have had wicked stomach and bowel pain that has, at times, left me feeling really nauseous and unable to eat.  This is another reason I wish the actual Menopause would hurry itself along because I’m worried about the increasing severity of my endometriosis and the irreversible havock its wreacking on my internal organs.

I’m having a small afternoon tea party for my birthday next month and spent a very nostalgic evening last night going through my music collection to put together a playlist.  I hadn’t listened to some of the tunes for 30 years, yet still knew every lyric.  I’ve gone for a mixture of genres as the people attending the party will be a mix of ages, though the only rock song I’ve included is ‘Since you been gone’ by Rainbow, which was an anthem of my teenage years to which I happily head banged in my fringed leather jacket til I gave myself a stonking great headache – it really is a wonder we weren’t all brain damaged!

My second outing with my new photography hide to catch the Kingfisher yielded results and I’m tickled pink 😀  It’s not the best photo in the world but, after 4 years of trying, I’m just thrilled to get a picture of this tiny, very hard to capture, most beautiful of wild birds.

Speaking of photography, for those of my lovely readers who have been asking I do sell my photos online internationally through Redbubble.  You can buy anything from cards to duvet covers, ipod skins to hoodies and all sorts inbetween by clicking on a picture you like then choosing ‘available products’ from the tabs underneath.  I’m currently adding my latest pictures so bear with me, as it does take up a lot of time and energy and I have precious little of either.  It constantly amazes me that someone in America is sleeping beneath a duvet on which sits a photo of my fabulous Bertie, or that someone is currently walking round in leggins or carrying a phone with a photo on which I have taken.  Me!  Sat here in my bed.  I ❤ the internet.





What’s the hold up?

I guessed I had Mast Cell Activation Disorder (MCAD) in 2012 and that I’d had it from birth, almost certainly as a result of also having Ehlers-Danlos Syndrome (people with EDS are massively more at risk of having mast cell disease than the general population) but getting it confirmed was a nightmare.

Looking for help and information I joined the, then, email group UK Mastocytosis as I couldn’t find any UK groups which dealt with MCAD, and amazingly discovered a dozen other women on there who also had EDS and MCAD.  Naturally threads opened up about these two diseases but this didn’t go down well with the rest of the group, who all had Mastocytosis not MCAD and none of whom had EDS.  I’d already started my blog, so decided that if it wasn’t acceptable for us to discuss EDS-related mast cell issues on UK Masto I’d start my own little email group through my blog where we could discuss it.  Seemed perfectly reasonable to me and at least we wouldn’t be upsetting or bugging the people who didn’t share our diseases.  So I wrote to the people off UK Masto that I knew had both illnesses and invited them to join.   For reasons I can’t work out, one of the women I invited forwarded my email to the (then) chair of UK Masto telling her I had started this little email group and I received a not exactly pleasant email off the Chair which resulted in me leaving UK Masto.  So we weren’t allowed to discuss EDS and MCAD on UK Masto, but weren’t supposed to discuss it outside UK Masto either.  To say I was confused dot com over events at the time is the understatement of the year and I still to this day don’t know why anyone on UK Masto took offence at me starting a tiddly tiny email group for a dozen women with diseases they didn’t have and didn’t want to discuss in any event.  What I did learn from the debacle, though, is that at that time in the mast cell world MCAD wasn’t really considered a ‘proper’ disease, unlike Mastocytosis which was a ‘proper’ disease.  I think the hoohaa was discussed after I left the group and thankfully resulted in changes and I know people with MCAD who’ve joined the group since and found them wonderfully helpful which is great, but it feels a bit unfair that I had to be the casualty left out in the cold particularly as, at that time, I still hadn’t received a diagnosis and was horrendously poorly, terrified and alone.

Getting a diagnosis of MCAD in the UK five years ago was almost impossible.  UK Masto had a list of Consultants round the country who dealt with Mastocytosis which my GP contacted, yet none of them saw patients with MCAD.  One of my lovely blog readers finally told me about Dr Seneviratne down in London, but he wasn’t funded to diagnose or treat MCAD on the NHS.  The reason for this is that diagnostic criteria haven’t been agreed upon and because of this MCAD isn’t recognized by the World Health Organization and therefore classed as an ‘official’ disease.  And if it doesn’t exist we can’t be suffering from it!  As I’m skint I could only afford to see Dr Seneviratne privately for my diagnosis and haven’t been able to see him for any treatment or follow-up care because I can’t afford to.  It’s unacceptable.  We pride ourselves in this country on health care being available according to need not ability to pay and I can’t believe that in Britain in the 21st century this situation is being allowed to continue.

There have thankfully been advancements in the MCAD world in the 4 years since my diagnosis, due solely to a handful of dedicated Doctors and Researchers particularly those working in the Ehlers-Danlos field who found that as many as 1 in 10 of their patients had mast cell issues.  In fact, in the recently updated EDS diagnostic criteria there is an entire chapter dedicated to MCAD and a book has now been written on the disease yet it is still not recognized by the WHO so still can’t be treated on the NHS.  What’s the bloody hold up?!  It’s been studied for over a decade now, and proposed diagnostic criteria were written as long as 7 years ago.  I can’t for the life of me work out why there isn’t more urgency to get it put on the map so that patients in the UK can be diagnosed and treated.

It’s seems to be a Catch22.  According to our Government it doesn’t exist.  Consequently we patients have no voice.  But how do we gain a voice with no official body shouting for us?  As usual it will be America who paves the way and we might trail along behind them in ten years time, though I can guarantee there still won’t be diagnostic testing available in the UK as NHS labs simply aren’t capable of storing samples adequately.  As a result it will be a guessing game as to who has MCAD and who doesn’t based on symptoms and people will be diagnosed who don’t actually have it which will muddy the waters in terms of research and treatment.  A disaster in the making if ever there was one, yet we patients are powerless to do anything about it.

There are a couple of NHS Consultants who now see suspected MCAD patients but, as I mentioned above, they don’t do any form of lab testing and diagnosis is based on history and symptoms.  It’s better than nothing but no-where near adequate.  Dr Seneviratne still only sees patients privately because he does insist on lab testing, which of course isn’t available through the NHS.  And in amongst the confusion and inertia are hundreds if not thousands of frightened, bewildered, untreated and very sick patients left floundering alone in the dark.



Weekly roundup

It’s been a strange week with one thing and another.  My Step-Dad’s Mum, who is 103, has been in a brilliant care home for the past 4 years.  A couple of weeks ago she had a heart attack, but being as though she has a DNR (do not resuscitate) order she wasn’t hospitalized and was cared for in the home.  Ten days ago it looked like she was passing away but the nurse inserted a drip and gave her antibiotics for a chest infection and she rallied.  I do wish the nurse hadn’t intervened because all it achieved was to drag her dying out.  Five days ago the Doctor went to see her and took the drip and meds away.  My Dad has sat faithfully by her bedside ever since and she finally passed away last night.  She’s never liked either me or my Mum for reasons unknown and I’ll go as far as to say she’s been a right bitch to both of us so it’s not like I’m sad about her death, however my Dad will be devastated.  No matter how old or how ill, our Mums are still our Mums.

We had a couple of dry(ish) days at the start of the week so I managed to get a few much needed jobs done in the garden.  It’s rained here in Cumbria almost non-stop for about 6 weeks now and was so cold last night I’ve woken to condensation on my bedroom windows.  FFS, does it not know it’s the middle of bloody summer??!

Thursday I took a friend from Camera  Club to photograph red squirrels at a secret location I don’t shout about.  They’re so cute I could watch them all day.  By mid afternoon I’d started with tummy pain and was a bit flummoxed as to what could be causing it.  It got worse as the day progressed, which is all I needed as I was having 5 other camera club members round to my house in the evening for a meeting about next season’s programme.  The meeting went ahead but I was feeling pretty ropey and couldn’t wait for them all to leave so’s I could get into bed with a hot water bottle.  My period pain always starts initially with stomach pain, but I thought I was only on about day 9 or 10 of my cycle so it couldn’t be that.  Er, wrong!  Woke the next morning to Aunt Flo and when I checked my diary I was actually on day 24 of my cycle – doesn’t seem like two bloody minutes since the last one!  Consequently I was awake for most of Friday night with awful endo-related period pain and a migraine which hung around through most of Saturday.

My lovely furry child Bertie turned 9 this week 🙂  I adopted him when he was 2½ and have no clue where those six years have gone!  I also have no idea what I did with my time or money before I got him but wouldn’t swap him for the world.  It’s because of him I got into photography and for that I will always be grateful.  He is my loyal and faithful companion and as I type this, sitting up in my bed, he is asleep between my knees with his head resting on my thigh.  I love him to the moon and back even though he pinches food the second my back is turned, eats sheep shit then licks my face and barks so much he’s in danger of perforating my eardrums 😉

Today is forecast to be dry and, dare I say it, even a little bit sunny so I’m palming the dog off with my Mum and taking my photography hide down to the river.  In the past 12 months I’ve managed to get good pictures of a red squirrel and a heron, both of which have been on my bucket list for the past 4 years but I still haven’t managed a picture of a Kingfisher.  I know where one is currently perching every day at noon, so I’m hoping if I keep going to where I know he hangs out I’ll eventually manage a shot.  Wish me luck!

Weekly roundup

My week got off to a flying start with me having the most fun anyone can on their own in a spare bedroom.  One of the themes for our competitions next season at Camera Club is water so I’ve wracked my brain to come up with something unusual.  I decided to try photographing exploding water balloons, so bought myself a cheap kids paddling pool to catch the fall-out and got set up using make-shift gear.

I hadn’t a clue what I was doing and people who do this kind of photography usually have expensive kit which allows the camera to flash at exactly the moment the pin pops the balloon, but I had to make do with my own reflexes and dodgy timing.  It took 20 goes, by which time I’d nearly flooded the house, but eventually I got the shots I wanted.  It was huge fun but I’m not going to do it again in a hurry 😉

Out of the blue on Monday my best mate asked if I’d like to meet for lunch.  She’s been really busy lately plus feeling rubbish, so it was lovely of her to make space for us to have a catch up.  I only see her at most twice a month as we live 45 minutes drive apart, so I make lists of stuff to tell her which she finds hilarious.  If I don’t write it down though I can’t remember what I did yesterday let alone a fortnight ago.  If I had a working memory I’d be truly awesome 😉

After a lovely afternoon with the bestie my week basically turned to shit and I lost 3 days to a brutal ovulation induced migraine, along with associated crushing fatigue and vomiting.  On the upside I barely ate for days and consequently  lost 2lbs, so silver linings and all that 😉

I knew the migraine was coming when I woke on Wednesday morning.  Sometimes they arrive out of the blue, but on the whole I get the classic prodrome phase, ie the 24-48 hours before the pain starts when I realize something’s afoot.  This can be a ravenous and insatiable appetite, usually for carbs or sugar.  Or boundless, almost manic, energy where I get all sorts of jobs done.  Or like this week, an overwhelming heavy, achy fatigue and falling asleep left, right and centre usually accompanied by nausea.  The pain started at about 7pm Wednesday night and I didn’t feel normal again until Saturday afternoon.  What a waste of my life.

Sometimes I can battle through despite the pain but this migraine was so severe every time I moved my head I felt like someone was battering my brain from the inside, consequently I had to stop in bed.  I did contact another 2 solicitors re my PHI case but so far haven’t heard back.  I also wrote to the human rights organization Justice, not because they can help me but just to highlight the issue and how some disabled women with PHI policies are being discriminated against so that everyone else can be equal.

In true summer fashion it has piddled down almost none stop for 2 months here in the north of England, but on Saturday we had a dryish day and, feeling half human for the first time all week, I palmed Bertie off with my folks and headed off down to the river.  For my upcoming big birthday I’ve treated myself to a new photography hide, which is a folding camping chair with a hood which comes over to form a kind of tent.  It’s way cool and there’s plenty of space inside for me to sit and have my tripod and camera in front of me.  There was even room for me to squat for a much needed pee and all in broad daylight on a public footpath 😉  I was hoping for a glimpse of the elusive Kingfisher who did arrive then got spooked and buggered off again, so I sat and watched some Sandmartins feeding chicks in their nests on the river bank.  It was lovely to be out in the fresh air, even if the second I packed all my gear up and started to head back to the car the heavens opened and I got bloody drenched.

While my Mum has been really ill the past few weeks she hasn’t been able to drink as much, and it’s been lovely.  We’ve had actual conversations where she has been lucid and rational and not spent the whole time giggling.  However she’s on the mend now and the drinking has started again in earnest, almost like she’s making up for lost time.  How anyone can be plastered at 9.30 in the morning is beyond me and by 4pm she’s away with the fairies.  I miss her.  I try to feel compassion but instead usually just feel sad and still a little bit mad if I’m honest.

95% of the food I eat is organic and freshly prepared, but some days I’m too sick to make anything and have to rely on pre-made stuff from the supermarket.  I choose items with as few ingredients as possible and seem to get away with it.  This week I discovered Quorn fishless fingers and was gobsmacked at how much they taste like regular fish fingers!  It’s actually really nice to eat junk food every now and again, especially when your appetite has vanished and you feel sick to the pit of your stomach.  And, yes, that is tomato ketchup on the plate – fuck it, I was feeling sorry for myself and it cheered me up!

No time to cook

It’s been some considerable time since I wrote anything diet/food related on my blog, so I thought I should explain why.  When my MCAD finally exploded back in 2012 I was having anaphylaxis every time I ate anything and sometimes after just drinking water.  I have never been so terrified in all my life and honestly thought I would die, especially as the Doctors I saw just looked at me like I was nuts and told me it wasn’t possible.  I was given diagnoses like gastritis and IBS, which I knew were absolute bullshit but I was told “it’s not cancer” and I should be grateful, then just left to get on with it.  Thank God for the internet and eventually receiving my MCAD and HIT diagnoses from Dr Seneviratne.

For the first two years following my diagnoses I was naturally obsessed with food.  I spent months wading my way through the information online on low histamine diets, adapting recipes to be low in histamine, experimenting and finally finding a plan I could stick to and which (on the whole) controls my symptoms.  I am so grateful to no longer pass out after I have a meal I can’t even tell you, though I’m not always symptom free.  That’s because my mast cells react to a whole host of things other than food, so it depends on any one day how full my histamine bucket is as to whether the mere act of digestion (which produces histamine!) sets off a reaction or not regardless of which food I’m eating.  But the symptoms aren’t anywhere near as extreme as they used to be and, although still not pleasant, are liveable with.

After my condition stabilized I really began investigating low histamine foods and made the shocking discovery that hardly any foods have been tested for their histamine content and every diet online is based, for the most part, on guesswork.  It rocked my world really because my life depends on keeping histamine at bay, yet the information on which I was basing my diet couldn’t be trusted.  I could still be eating ‘safe’ foods which are nothing of the sort and may have been cutting out foods, like egg whites, for absolutely no good reason!  What a bloody nightmare.  So I began experimenting again and discovered I don’t react to baker’s yeast, small amounts of lemon juice, vinegar, stone fruits or fresh berries though chocolate is still off the menu *sob*.

By now it’s 2016, I’m in peri-menopause and am having to contend with extra symptoms on top of the dozens I already have.  My Mum has been diagnosed with severe COPD and Emphysemia, is in heart and kidney failure and has become an alcoholic, while my Dad is in the early stages of Dementia.  They both need help with daily living and the job has fallen to me (quite why it hasn’t fallen to my 3 healthy brothers, their wives or adult children, three of whom ironically work for Home Care Agencies, is another story).  It’s hard enough keeping my own life and home going and I’m finding keeping two homes and three lives going tough.  I’m so busy I meet myself coming back, then am so exhausted from all the extra work and my rampant hormones I literally can’t think straight.

These days I no longer have the time or energy to spend hours in my kitchen thinking up and experimenting with new recipes.  In fact, I spend one day a week cooking then shove what I’ve made in the freezer as I don’t have the time or energy to cook myself dinner every day, let alone anything extra.  In any event, I’ve become quite disillusioned with ‘low histamine’ diets because neither I, nor anyone else, have any idea of the histamine content of individual food items and I now use all sorts of ingredients in my dinners which would cause outrage if I were to put them online.  For example, this week I happened to be in Sainsburys and bought 2 jars of pre-made sauces – don’t fall off your chair in shock 😉  One contained concentrated lemons and the other contained additives!  I know for a fact I won’t react to either, yet if I put them on my low histamine shopping list I’d be crucified, because according to the lists online they contain things I shouldn’t be eating.  Only of course no-one knows if I should be eating them or not because they haven’t been tested for histamine – try telling the low histamine zealots that though!  Obviously my ‘low histamine’ diet has helped my symptoms enormously so obviously some foods are higher in histamine than others, but whether I needed to have cut out all the foods I have is anyone’s guess.  My reduction in symptoms might literally be down to cutting out spinach, cheddar cheese and fish and I’ve been unnecessarily cutting out 30 other foods for no good reason.  Or it might be that I absolutely have to cut out 30 foods in order for my diet to be low in histamine.  I have no idea and neither does anyone else.

According to people like the Low Histamine Chef and others I shouldn’t be eating low histamine anyway, but I should be eating anti-inflammatory.  Only there’s about as much robust evidence for anti-inflammatory diets as there is for low histamine diets.  Point me to the research on people, not rats, that measures inflammation after ingesting a particular food and I might change my mind.  Only of course it doesn’t exist.  It’s as impossible to measure inflammation in our bodies after we’ve eaten a specific food as it is to measure histamine in our bodies after we’ve eaten a specific food.  It’s all such bullshit yet is talked about by these self-proclaimed ‘experts’ as fact.  And just because they include research references at the end of their articles doesn’t make it fact either.  Does anyone actually read the research?  Is it a properly conducted, double blind, randomized, controlled trial which has been peer reviewed and published in a nutritional journal?  Because if it’s not it’s not worth the paper it’s written on.  When I was investigating low histamine foods, I discovered that the only reason egg whites were included in low histamine food lists is because of a tiddly trial done on mice in the 1950s, which was never reviewed or published.  The way food was made and stored in the 1950s bears no resemblance to the way food is made and stored in 2017, so quite why this pseudo half-experiment is quoted as fact in the low histamine world astounds me.  All this stuff plays on the absolute desperation of very sick people and it makes me furious.

It extends beyond the world of histamine though.  For years saturated fats were ‘bad’ for us as they raised cholesterol and gave us heart attacks, until it was discovered that actually heart disease is a much more complex issue, trans fats were much more unhealthy than saturated fats and the jury is still out on how big a role saturates play in plaque formation.  Then salt was bad for us, until it was discovered that eating too little might be as bad as eating too much, though again the debate rages on.  Now it’s sugar that’s the demon, until in 30 years time it will be discovered that without sugar our energy levels are half what they used to be or some other such nonsense.  If we’re honest, we know very little about digestion, diet and the impact what we eat has on our health, and I suspect genes and how we as individuals process food will turn out to be the determining factor for health, rather than the foods we eat per se.

I admit I’m no expert on food and the information here on my blog is simply based on my own thoughts and experience.  And my experience is that I am currently managing my symptoms OK with the diet I choose to follow and, due to changing circumstances in my life, I no longer have the time or energy to experiment with new recipes particularly when I’m not even convinced they are low histamine as I have no evidence to back that theory up.  So apologies to anyone reading my blog and hoping for loads of inspiring recipes and foodie facts.  Having said all that, I hope the information and recipes listed in the menus at the top of my site are useful in your own journey through the histamine maize and at least it’s all free and I’m not making money off the back of other people’s suffering.

Aging and chronic illness

As most of you know, I turn 50 shortly and while that’s not exactly old it’s not exactly young either. In the decade since my 40th birthday my joints have starting subluxing, I’ve developed stiffness so severe at times I can’t even walk to the loo, my back pain is so bad it both scares me and stops me sleeping, and my previously unknown MCAD has reared its ugly head, to the point where at one stage I actually thought I would die from multiple anaphylactic events every day.  Make no mistake, getting older when you’re already chronically ill sucks.

I have the utmost respect for anyone who works for a charity having done it myself for many years, and know I owe a huge debt of gratitude to all the wonderful people working for EDS and M.E. organizations, however I do have a bit of a beef with them and it’s this: all their information is aimed at either kids or young adults (and by young I mean pre-menopausal).  Their magazines are full of young folks doing sports, fundraising by whatever means possible and generally being positive and not letting their disease beat them.  Which is great.  But speak to them again in 20 years time and they might be telling a very different tale.

Did you know there is not a single piece of research that’s been carried out on older people with either EDS or M.E.?  There is loads of info on possible complications in pregnancy yet not a thing on the Menopause, despite the fact that not all women will have babies yet all women will go through The Change!  I find this utterly shocking, particularly in the case of EDS where patient forums show that many women aren’t diagnosed until their forties because that’s when their symptoms seem to go nuts (as did mine).  Consequently there are no information leaflets from the charities on what to expect as we age, which is actually quite discriminatory.  I should really sue, if I could find a solicitor to take the case 😀

Due to an absolute lack of information on aging with my diseases I have no idea what to expect.  Even healthy women can struggle with joint pain, exhaustion, dizziness and stiffness at Menopause so when I have these symptoms I don’t know if they’re normal or part of my hEDS.  I don’t know if they’ll pass or if I should be concerned and ask to see a Rheumy.  I don’t know if I have a greater chance of wear and tear arthritis, though I assume I must have.  I have no clue if the extra exhaustion I feel is part of my waning hormones or whether age is negatively affecting my M.E.  Will my decades of inactivity adversely affect my heart and, if so, why is that not being monitored?  Am I more, or less, likely to have a stroke?  What’s the deal on osteoporosis?  Skin thins with age, so will mine be worse as a result of having hEDS?  Am I more likely to bruise as my veins, skin and capillaries weaken?  And 200 other questions I don’t know the answers to.

Health in general seems to be all about either children or pregnant women.  No-one seems to give much of a stuff about issues which affect the middle aged.  It’s almost like we don’t exist, and it’s not until we’re in our seventies and at risk of old age diseases like Alzheimers that the medical profession starts to give a stuff again (my Dad’s dementia care, for example, has been excellent yet I’ve never once had my memory problems evaluated let alone treated).

At the moment I feel like I’m dropping to bits, but is that a normal hormone-induced dropping to bits or is my hEDS actually deteriorating?  Should I be pushing for a referral or just putting up and shutting up?  There is an urgent need for studies on chronic illness in the older age bracket.  We need to know if there should be more regular monitoring of our conditions, whether treatments which are affective in younger adults are still as effective in older adults, and most importantly what the normal progression of our diseases should look like as we age because unless we know what’s normal we can’t know what’s abnormal.

Of course, the lack of information on hEDS and M.E. is nothing in comparison to the lack of information on MCAD, particularly in the UK.  Peri-menopause has caused my mast cells to go off the charts bonkers yet I haven’t seen a specialist since I was diagnosed 4 years ago.  I’m not being monitored in any way, am having to treat myself in the best way I know how, and am basically white knuckling it with no idea what my post-menopausal future will hold.  Which is scary considering MCAD may pre-dispose me to leukemia and other cancers and carries the daily risk of sudden death from anaphylaxis.  Or MCAD may not predispose me to cancer – noone knows, which is kind’ve my point! It seems that, in respect of the middle aged, no-one knows much of anything when it comes to my diseases and that, as a matter of urgency, has to change.




Weekly roundup

I’ve got to be honest, this week hasn’t had many saving graces.   My Mum is still really sick but despite ringing the health centre at 2pm last Friday afternoon I couldn’t even get to speak to a Doctor let alone see one.  The only thing available was an appointment with the Practice Nurse who said her chest and throat were fine and she didn’t need any medication, which we knew was bullshit and Mum continued to decline over the weekend.  You can’t ring for an appointment on a Monday morning because the phone is rammed, so I told my Dad to physically go up to the Health Centre for 8.30am and get her in to see a proper Doctor as an emergency.  Even at that time in the morning there were 10 people waiting in the queue infront of him (!) but he did manage to get her in to see a Doctor at 10am, who prescribed not only another lot of penicillin but six steroid tablets a day for a week and a third inhaler.  FFS, if she’d been prescribed those on Friday night she wouldn’t have had the horrendous weekend she did.  Makes my blood boil.

She was only slightly better by Wednesday and still had a raging sore throat.  Fortuitously she had her yearly appointment with the respiratory nurse, who told her the sore throat was a severe case of thrush due to her steroid inhaler.  Why the hell hadn’t this been picked up by the practice nurse or the bloody doctor?!  So she’s now on a spray for her throat and has been taken off her steroid inhaler for a month and given a different one.  She’s still coughing her lungs off but at least she’s now started sleeping better and eating again, after a month of not doing either.

To make things worse, my Dad got a call from the Care Home where his Mum is to say that they think she’d had a heart attack and had slipped into a coma.  She’s 104, can’t walk, can’t hear, can’t see and is totally doolally so to be fair her death would be a blessing.  My Dad and his Sister then spent most of Thursday and Friday sat next to her bedside, only for her to rally and ask for some dinner!  So it looks like she’s not dying after all which I’m not sure is a good thing.

Inbetween all that drama I had the news about Liberty not taking my discrimination case, and heard from Tesco that they’re not upholding my complaint about Bertie’s insurance being increased by 700%, so I was proper down in the dumps.  To add insult to injury I seem to have pulled something in my left hip and something in my right shoulder, so I’m hobbling and having difficulty using my arm.  No clue how either injury happened.  There are times when life seems like one long struggle and I simply don’t have the energy to keep climbing uphill.

To take my mind off everything I decided to work on a photography idea I nicked off the internet.  My cousin actually thought it was real and that I’d painted the landscape scene myself lol!  If I could paint like that I’m fairly sure I wouldn’t be as skint as I am 😉