Tag Archives: HIT

Confused.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Weekly roundup

My biological Dad died on Friday following a massive stroke.  My Mum left my Dad when I was 7 and my brother was 9.  My brother stayed living with my Dad in the Midlands, and I moved 200 miles north with my Mum to Cumbria as that’s where she was from.  Telephone calls in those days were horrendously expensive, so I didn’t get to speak to my Dad all that much.  My Mum could drive (my Dad had a motorbike but no car), so we used to shlep down the M6 once a month to visit my Dad and Brother, with me puking from motion sickness by the time we got 20 minutes up the road.  It was not fun.

As time went on we visited less and less.  My Dad punished my Mum for leaving him and was often conveniently out when we arrived, leaving us sitting on the doorstep.  In punishing her, however, he forgot that he was also punishing me.  I’d receive expensive gifts at Christmas and birthdays but as the years went by I didn’t feel I had much of a relationship with my Dad.  He very reluctantly paid child support, which was £7 per week in 1974 and didn’t change until he stopped paying in 1983 by which time it barely kept me in tights.

My Mum remarried when I was 9 and it was my Step-Dad who kept me financially, put a roof over my head, came to my school plays, put up with my teenage tantrums, worried about me, ferried me about, took me on holiday and did all the other things that Dads do.

I got married when I was 21.  My Mum and Step-Dad paid for the wedding, came with me to choose venues, my dress and the rest, and put up with my crying fits when the stress got too much.  I asked my Step-Dad to give me away and sent invitations to my Dad, brother and rest of my paternal family.  My Dad threw a hissy fit, saying I was his daughter and he should be giving me away.  So I let rip.  I’d been living in Cumbria for 14 years by that stage and he had never once been to visit me, despite the fact there is a straight train from his town to mine which takes about 2½ hours.  He could go to Tenerife on holiday but not travel a couple of hours up the M6 to see his only daughter.  I basically told him he’d been a shit Dad and I meant it.  Neither he, my brother nor any of my paternal family have ever spoken to me since.

Five years later when I was 26, desperately ill after catching meningitis, developing severe M.E., unable to speak or walk and having been told I might die, my family heard about a private Clinic which offered an experimental treatment.  We knew a girl very very ill with ME who had been there and she had come home much improved so, absolutely desperate and fearing for my life, my parents decided to take me there.  But it cost £1000 a week, and my parents were struggling to find the cash.  So I wrote to my biological Dad, explained the situation and asked him to help.  His reply was that ME didn’t exist, there were people in the world worse off than me and I needed to pull myself together.  There was no cash, not even a ‘get well soon card’ and he still didn’t come to see me.  As far as I’m concerned he died that day, not this week.

30 years later I still don’t feel I did anything wrong.  My paternal family all blamed me for being the innocent victim in a divorce which wasn’t my fault.  My Dad didn’t make much effort and then basically left me to die.  How I ended up being blamed for all that and being sent to Coventry for the rest of my life is still a bit of a mystery.

So I have to be honest, I feel absolutely nothing about the death of my biological Dad.  I grieved for him 30 years ago and have nothing positive or negative left to feel.  I’m sad for my brother who I’m sure is in bits but these people are basically strangers with whom I share DNA and that has been their choice, not mine.  It is not up to children as young as 7 to make the effort and keep relationships alive in a divorce.  It is up to the parents.  My Mum tried her best and my Dad made it difficult.  All of which was outside of my control.

During the conversation with my Dad over my wedding, he shouted “your my daughter and I love you”.  Love is a verb.  It’s a doing word.  You can’t just say you love someone, you have to show it.  You have to do the work.

On to other news.  Each year my Camera Club has a competition with two other local Camera clubs.  A total of 45 images are judged and I’m delighted to say that this picture I took of my Step-Dad came 2nd 🙂

 

Weekly roundup

I won’t lie, this week has been physically tough.  For two days I literally couldn’t stand upright for the pain in my abdomen, which turned out to mostly be down to the fact I was ovulating (early).  Due to my endometriosis, ovulation has become almost as painful as menstruation so now instead of being tortured once a month, I’m tortured twice.  Yay.

The huge surge in hormones associated with ovulation and menstruation play havoc with both my MCAD and my EDS.  I already have a hiatus hernia which becomes even more slack at these times, allowing acid from my stomach back up into my esophagus totally unchecked.  Histamine and other mast cell mediators respond to the rise in hormones, particularly in my stomach, increasing acid production which, added to the slack sphincter, causes reflux hell.

Add to this a lack of sleep and the emotional impact of huge surges in hormones and it leads to weepiness, grumpiness, anger and generally feeling shite.  I swear if there is re-incarnation I am refusing to ever come back to this plane as a girl.

I had another good session with my counsellor on Tuesday.  She is helping me understand why  my Mum is using alcohol to push me away and knowing the reasons behind that does help me be less angry at her (some of the time!).  In fact, the last few sessions have been so enlightening and helpful I’m not sure I need to keep going for therapy – I’ll make a decision about that next week.

Wednesday night was a competition night and I played a blinder.  We are allowed to enter 3 photos per competition and mine got 3rd, 2nd and 1st place!  It doesn’t get much better than that.  I’ve also been working on another weird image I’m calling ‘At One With Nature’ which I’ve entered into the next competition.  It’s sooo much fun dressing up, although I did get some very strange looks off the Postman when I answered the door to him looking like Morticia Addams 😉  The £8 wig off Ebay also shed like a mangy dog and I’m still finding 2 foot long hairs all over the house:

My dog walker’s daughter was poorly for 2 days this week which meant she couldn’t walk Bertie.  Why do these things happen when a) my scooter was away being fixed and b) I was having such a horrendous week I could barely stand??!  I just had to grit my teeth and walk the furry child myself, which was no fun in the world.  My scooter came back on Thursday and is so far OK, but it’s been OK before only to conk out again – time will tell if it’s actually fixed or not.

Today I’m driving the 45 minutes through to my best mate’s house to spend the afternoon with her.  It’s tiring and makes for a long day especially when I’m feeling rubbish, but at the same time it’s really nice to get away from the house which I rarely do.  I have to take Bertie out first though, then drop him off at my parents’ house for the day, so I’d better get my lazy arse out of bed and get cracking!

 

 

Re-introducing foods

I was doing so well on my ‘low histamine’ diet that last year I decided to re-introduce some foods I’d been avoiding – you can read all about it here.  Initially they seemed to be having no effect on my histamine load whatsoever and I was all smug, but as time went on my histamine bucket began to fill up.  After about 5 months my body was definitely not happy and I was having some symptoms I’d forgotten existed, like pins and needles in my bowel after eating, having to get up in the night to pee, insomnia and hay fever symptoms.

Here’s the thing about Mast Cell Disease though – it’s easy to say “it’s my MCAD playing up because I’m eating x, y or z again” and in some respects this turned out to be the case, but in others not.  My best mate doesn’t have MCAD but she does get hay fever really badly and at Christmas she told me her hay fever had gone berserk, as had a friend of hers.  December is the middle of winter here in the UK and it’s been freezing.  There’s no way on earth there should be any pollen around, but our symptoms seem to say otherwise!  I live surrounded by woodland and am truly allergic to some tree pollens, so we can only assume spring will come early this year.

My hormones have also been seriously out of whack in recent months and from reading menopause forums even healthy women can develop allergy symptoms during this time in their lives along with pain and insomnia.  So how much of my symptoms are down to my hormones, rather than what I’m eating, is impossible to tell.

My EDS has also gone absolutely nuts and the inflammation from that isn’t doing my body any favours.

Having said all that I just had a sneaking suspicion that all the chocolate I was eating wasn’t helping the situation so I cut it out.  And I definitely feel my histamine levels have dropped as a result.  I still have no reaction at all to baker’s yeast in normal bread, lemon juice and store bought mayonnaise so am continuing to include those in my diet which makes eating lunch out a shed load easier.

If I could re-introduce one food it would be tinned chopped tomatoes.  As a vegetarian tomatoes are in everything and, dammit, they taste good!  I substitute tomatoes for my home made red pepper sauce in recipes and this has worked great, but I spend an awful lot of my time and energy making the sauce and it would revolutionize my life to not have to do that.  So I’m toying with the idea of re-introducing tomatoes and seeing how I get on.  I’m not sure now is the best time, however, with hay fever season approaching and my hormones so out of whack, so I’ll let you know what I decide.

I forgot to tell you all that over Christmas I found some delicious mints with allowed ingredients.  Bassetts Mint Creams contain sugar, glucose syrup, water and mint flavouring and are available from Sainsburys, Morrisons, ASDA and Ocado and are suitable for vegetarians.  No more having to faff about making my own mint fondants when I fancy a special treat 🙂

Weekly roundup

In order for me to get through everything I need to do with my very limited energy I have to have a schedule.  I break the week up into days and each day up into hours and each hour has an activity.  It stops me feeling overwhelmed and (in theory) stops me from doing too much of a particular activity at any one time which helps with energy management.  Doing fun things, and not doing anything at all, are built into my schedule.  If they weren’t I’d do nothing but chores 7 days a week and I’ not prepared to have a life devoid of leisure time.  The system works until I have a migraine or my period or my patio floods and I have to get an emergency plumber and can’t get my jobs for that day done.  Then it all turns to shit 😉

I’ve been ragingly hormonal for days, despite it being a week since my period ended.  When I’m hormonal I crave dairy products for some bizarre reason.  Warm milky drinks, ice cream, rice pudding (mmmmm I could eat a rice pudding right now and it’s 7am!) which I don’t eat at any other time.  I just go with the flow as my body is obviously trying to tell me something.   Friday I spent the day ravenously hungry which is usually a sign I’m getting a migraine, and sure enough I woke in the middle of the night with my brain throbbing.  Luckily it wasn’t a bad one though and had largely gone by lunchtime.  Last night I went to bed fine, woke at 3am and felt horrendously depressed and started to cry, managed to talk myself round and go back to sleep and have woken this morning absolutely fine again.  This peri-menopause malarky is seriously bonkers.

My EDS has taken a proper nosedive in the past few months.  I don’t know whether it’s weather-related, hormone-related or not related to anything in particular.  It’s such a shame because ME-wise I feel relatively stable and MCAD-wise I feel quite good (!).  I’m in pain just about everywhere, all my ligaments and muscles are stiff, I can’t get comfortable no matter what I do and I walk about like a bloody 90 year old.  I’m also permanently knackered (the lack of energy from my EDS is totally different from the ill-exhaustion I feel when my ME is bad) so I’m finding living life on a practical level hard work.  These are the times I wish I were rich and had servants.

I had some great news this week about my furry friend Bertie.  He’s had a large lump on his tail for some months now and the Vet hasn’t been sure what it is.  She didn’t want to do a biopsy as there is very little skin on a dog’s tail and wounds are notoriously difficult to heal, so it’s been monitored for changes.  Over Christmas I noticed a scab had formed so went back to the Vets this week for a check.  She was able to remove the scab and squeeze ten tonnes of cheesy crap out of the lump, which proves it was a cyst and nothing more sinister.  I’m so relieved and I’m sure Bert is much more comfortable with all that nasty gunk gone.

I’m ready for spring now, even though it’s at least 2 months away.  It takes forever to get all my kit on to take Bertie out and, although it’s been a good winter in most respects, I’m just ready for it to be warmer.  Mind you, when it gets warmer it tends to get wetter then I moan about the rain!  Let’s face it, I just wish I lived somewhere sunnier even if it is stunningly beautiful here.

I’ve been bargain hunting on Ebay this week.  I have some ideas for some gothic-inspired photographs so have been ratching for medieval costumes.  Ebay and Amazon are fucking brilliant – you can buy anything on there and often for under a tenner (which is a good job cos I’m absolutely broke).  Watch this space!

 

 

Weekly roundup

This weekend is the last of my staycation.  I’ve had a lovely 2 weeks resting (in between walking the dog, doing meals, the odd bit of laundry, the dishes and all the other stuff that can’t be ignored) and it’s been heavenly.  Simply heavenly.  Or it would have been if my body had cooperated.

My joints/muscles/ligaments are still very painful and I’m so stiff I can barely move in a morning.  Resting has helped but I think in order for it all to settle down fully I’d need a couple of months off which is never going to happen.  My period was due this week, and I started having period pains on Sunday.  Which got worse and worse until Wednesday evening when I felt like my entire torso was on fire.  The pain was indescribable and resulted in me blacking out at 3am while on the loo with diarrhea.  And my period hadn’t actually started at this stage!  I cannot live like this for another couple of years until Menopause – I think I’d lose my sanity.  So I’m going to have to give some painkillers a go.  I thought I’d ask my GP for a Mefanemic Acid prescription and see if I can tolerate it (paracetomol/tylenol is out, as is asprin and codeine based drugs).  My period has now ended but my entire digestive tract, bowel, hips and pelvis feel like they’ve been in a car crash.

Despite the pain and total lack of sleep I attended another funeral on Friday.  A lovely, kind man from my Camera Club who died very suddenly before Christmas.  I was chatting away to him on the Wednesday, arranging to visit him in the new year to pick his brains about using flash for portraits, he went out with his buddies on the Friday to a regular luncheon club and on the Saturday he was no longer with us.  Seize the day my friends, whatever the day holds.

I had to get an emergency plumber out this week after my patio flooded with water due to a blocked drain.  Luckily I have plumbing insurance, which seems like a waste of my precious cash until events like this happen, when it seems like the best idea I’ve ever had 😉

I had a robust response to my Food Skeptic post.  I fucking dread writing posts about food and if you’ve noticed do very few of them these days.  The reason being that people are very passionate about the subject and, I have to say it, I brace myself for the response.  Instead of reading what I actually write, some people read all sorts into the posts that aren’t there which, as a blogger, I’ve found happens when someone feels strongly about any particular subject.  I understand totally but as the writer it can be stressful.  All I can say is I’ve never bought into the “super foods” theory, or the supplements theory and I’m no more sick than most of my readers.  In fact, I have made a substantial recovery after being bedridden with very severe M.E. for nearly a decade and I didn’t do it using food or supplements while many of my very ill friends who follow all the currently popular dietary advice and spend the gross national product of a small nation on supplements are still very sick indeed.  I can only talk about my own thoughts and experience so that’s what I share with you all.

Y’know the friend who told me I looked like crap in a recent selfie?  Well I got another, un-asked for, email from her this week.  It was bizarre and stated that my photo portrayed a “friend who has endured so much pain and suffering though illness who is now in a dark place of illness having lost that special sparkle and smile and looking so much older than you do in reality”.    Am I in a “dark place of illness” because if I am no-one’s sent me the Memo?  I have an overly-full life, a beautiful home, live in one of the most amazing places on earth, friends, a hobby I love and live with a passion many healthy people fail to achieve.  Even my Counsellor is gobsmacked at how much I squeeze out of life despite my circumstances.  My friend, however, is one of these people who, because I am disabled, talks about me as that “poor woman” and tries to place me in the role of victim, which seriously gets my back up.  For reasons I won’t go into she seems to be depressed and pitying me seems to make her feel better about herself.  Either that, or in her own mind she wants to see me as depressed so that she has some company.  I have no idea why she’s felt the need, three times now, to tell me my picture makes me look “years older than I am” and miserable to boot.  She even said my photo had “made her cry”.  Seriously?!  I’m dressed up in a velvet cape for crying out loud.  It’s art.  I’m using it for my CPAGB distinction and the judges at the Royal Photographic Society don’t much like the types of smiley portrait pictures you see in shop windows.  Here’s the final picture – if I look years older than I am it would make me 60 and if I look this good when I’m 60 I’ll be well chuffed.  In fact, I’ve barely a wrinkle on my face and have skin, even at 50, that my younger friends would kill for.  I don’t give a rat’s ass whether she thinks I look like crap because I have enough self-esteem to know it’s not true.  What I take issue with is her continuing need to tell me I look like crap –  I still can’t work out why a friend would do that.

I shall end on a positive.  My cleaner came back to work this week after being off sick for 2½ months.  Hurrahhhhhhhh!!!!!!!!!  With my current level of health I simply can’t do the housework and it was lovely this week to finally be in a clean house and bed 🙂

Christmas roundup

Well, I survived Christmas……just.  I’m glad it’s over though, it’s exhausting.

I’ll start with my “friend” who told me a few home truths about a photo I’d taken of myself.  Yes I felt hurt by her need to criticize my appearance, but she’s my neighbour so never speaking to her again is not an option.  So I was the bigger person and put her Christmas card through her door as normal.  She didn’t apologize and that’s OK – I shall let the Universe deal her whatever hand it sees fit which, if she goes round telling her friends they look like shit, will be loneliness.  The fabulous Liz Gilbert wrote a post on “friends” who criticize this week – it says everything you need to know on the subject.  I love Liz Gilbert.

The Tuesday before Christmas I went to a friend’s husband’s funeral.  He was an alcoholic and led her a dog’s life for decades, despite the fact she herself is suffering from Parkinson’s Disease.  So for his Eulogy she could have said some pretty damning things but, with her usual grace and humour, my friend paid tribute to his life and rose above her anger, frustration and pain.  She’s a wonderful human being and I’m glad she’s finally free of him.

The ten days leading up to Christmas were incredibly challenging.  Not only was I still recovering from a throat virus and my fall down the stairs, I also had a huge pain flare-up and hurt in places I didn’t even know existed.  My feet at the moment are crippling, my hips are killing me again (*sigh*) and all the cooking/freezing I did so that I could have a holiday has not done my hands and wrists any favours (more on that later).  The pain made kip almost impossible which meant I was sleep deprived and irritable as all hell.  My hormones since my last period have also been evil and I have had some godawful endo-related pelvic, bowel and stomach pain – it’s like having permanent colic.  So my meltdown Christmas day wasn’t that surprising.  I got over it though and got through Boxing Day, and finally on 27th I started my stay-cation which has been heavenly 🙂

I spent the first day napping, and napping and napping some more but by day two I was bored 😉  So I’ve spent the week in my recliner chair in front of the fire, with fairy lights twinkling, working on my entries for my Photographic distinction.  I have to produce 10 prints by the end of Feb which are then sent off to the Royal Photographic Society and judged in April.  Trying to get them perfect in Photoshop is hard work, especially with four fingers taped up and two wrist braces on, but I’m getting there and it’s exciting!

My dog walker has been off over the hols, so I’ve had to take Bertie out twice a day which, with incredibly painful hips and feet, has been difficult.  However, at least it’s been fairly dry and I’ve tried to go to some different places – I’ll be glad when his walker is back on Monday but, because getting up, dressed and out the house for 9am is a killer and being stationary on my scooter in zero temperatures is enough to give a sick person hypothermia!

Sooooo, on to my hands.  I appear to have strained the ligaments around the knuckle of my Index finger on both hands chopping veg.

Do any of my EDS readers know how to immobilize a knuckle?!  At the moment I’ve buddy taped my index fingers to my middle fingers and, although it’s helped about 50%, that still doesn’t stop my knuckle from bending (see below) and therefore still straining the injury.

I had no idea quite how much one uses ones knuckles and I’m stumped as to how to stop my knuckle from moving while it heals.   Any advice appreciated.  Was it worth the injuries to not have to cook over the holidays?  Hell yes!  OMG it has been bliss to go an entire week without having to make a single meal.  If I won the lotto tomorrow a personal chef would be top of my to-buy list.

I have a feeling that a reader to two that I’ve had words with in the past may have re-joined my blog under different names.  I suppose I should feel flattered, but actually I just think it’s creepy.  And I’m still getting people diagnosing me with all in sundry despite the fact they have never met me, have access to my medical records and test results, and aren’t in any way  medically qualified.  If I’d listened to everyone’s diagnoses over the years I’d have about 50 different ailments and I think the 5 I actually do have are quite enough 😉  I would hope that, after 22 years of crippling illness, I’d know more about my health that a complete stranger off t’internet and if not I deserve to be sick!

Well my fingers are all typed out so I’ll close.  I hope you’ve all had a slightly more successful Christmas than me and didn’t spend the day wanting to murder someone.  I’m going to end on a positive and say that my GERD-related two month long cough has finally gone, hurrahhhh 🙂  For a long time I took Gaviscon, which forms a barrier on the stomach to stop acid leaking up through my hernia and into my lungs (hence the cough), but as with all things drug-related eventually started reacting badly to it.  However, I’ve had a break from it for a couple of years  and my GERD got so bad before Christmas that I decided to give it another go.  The Gods must have been in a good mood because I’m currently tolerating it well and my cough has all but diappeared, for which I am massively (massively!) thankful.  Catch you all in 2017 🙂