Tag Archives: HIT

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 🙂

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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 🙂

 

Weekly roundup

As we’re now in December I turned my Christmas lights on this week.  I don’t usually have any outside lights, as I don’t have the energy to put them up or take them down, but I spotted a cheap pre-lit Cherry tree in B&M which just had to be plugged in and couldn’t resist buying it.  It looks similar to this and is really pretty in my miniscule front garden:


My cleaner is still off sick and has no idea when she’ll be back at work.  I have to ask myself how long I can leave the situation before letting her go and finding someone else (good luck with that in December Jak!).  The thing with backs is that once they’ve been damaged they tend to never be the same again, so how will she cope with a very physically demanding job?  In my last Weekly Roundup I mentioned that I find cleaning the car myself almost impossible and one of my lovely readers asked me why on earth I need to wash the car.  I don’t wash the outside, I go through a drive-in, but when you live in the countryside and own a dog this is the reason you need the inside regularly cleaned 😉

Bertie regularly has half a forest stuck in his fur then shakes himself and the mud splattered up the car door took 3 goes with a scrubbing brush to get off!  More than anything, the smell of wet muddy dog is enough to knock you sideways!

I was in tears on Tuesday and it takes a lot to make me cry.  You’ve all heard me complain about the sodding dog on the farm next door barking at all hours of the day and night, but it’s not the dog’s fault.  It’s treated appallingly, not given any attention or affection, and left on its own for hours on end.  In 2014 I reported the owner to the RSPCA for tying the dog’s muzzle with wire – it was nipping the heels of the cows it was herding so its muzzle was taped shut.  The problem is, dogs don’t sweat like we do and have to pant to cool down.  In addition, one of its front paws was being put through its collar and it was being made to hobble around on 3 legs.  The RSPCA inspector visited them and the farmer pleaded ignorance saying he had no idea this was abusing the dog (is he having a fucking laugh?!).  That was 2 years ago and the dog is still regularly having its leg put through its collar for reasons I can’t work out.  If it’s to stop it running off it’s not working, because this week I found it hobbling ¼ of a mile up the village.  I was furious and called the dog over to me, took a photo for evidence, then undid its collar and freed its leg.  I then, once again, reported the cruelty to the RSPCA.  The dog is abused on a daily basis – I’ve seen it kicked, hit and strangled.   A beautiful Border Collie, highly intelligent and extremely affectionate.  I came home and bawled my eyes out, imagining someone treating my beloved Bert that way.  I’ll let you know what the outcome is – at least this time the farmer can’t plead ignorance as he was told in 2014 that this treatment of the dog is cruel.

Another lovely reader wrote in and told me that the C5 programme I mentioned this week is now available on Catch up here for anyone in the UK who missed it.

I had a bit of a mishap on Thursday.  At 9pm I went downstairs to turn all the lights off, missed my footing and fell down my wooden staircase.  My wrist is proper sore and still bandaged up (don’t panic, it’s not broken just sprained).  Ouch!  Although I didn’t actually say “ouch” at the time.  No, the air was blue with goddamn-motherfucking-swear-words.  The worst of it all was that in trying to save myself I ripped the pretty Christmas garland wrapped round the bannister off and broke it.  Bugger!

In this situation, the first thing I did was slap on some Arnica cream to help with the bruising, then a compression bandage to help with the swelling.  You’re supposed to ice these kinds of injuries but it was late and I was ready for bed so I didn’t bother.  The weird part was that the next day other parts of my body were itching like mad.  I just thought I was producing histamine in response to the trauma of the accident, so went about my day as usual.  It was only when I got undressed to get in the bath that night that I realized the parts of my body that were itching were actually injured!  I’d bruised my hip and taken the skin off various other areas.  Bizarre that I didn’t feel pain.  The injury sites itched instead, which is a peculiar response to being hurt.  My wrist doesn’t itch though.  No, it hurts like a son-of-a-bloody-bitch 😉

As Christmas is heading for us like a runaway horse, look out for a post this week on how I survive the holidays.  I used to try and do Christmas like a healthy person, then relapse and be in bed til March.  Something had to give and several years ago I put my foot down and said enough is enough.  We still celebrate but it’s no longer stressful or exhausting and doesn’t culminate with me ending up in a coma.

Our diseases on the telly!

I saw a trailer in the week for a programme which featured a girl who was “allergic to everything”.  Things like that always wave a huge red flag for me so I decided to watch it.  It focused on 3 young adults, one who slept constantly who was finally diagnosed with Kleine Levin Syndrome, one who was “allergic to everything” and one who “had the body of a 90 year old”.

As I watched the story of the allergic girl unfold I thought “OMG, I must get in touch with her – she has MCAS!”  The fact she was also a professional gymnast, and clearly hypermobile, was the icing on the cake.  She’d been hospitalized over 40 times in 3 years with severe anaphylactic reactions, yet extensive immune and allergy testing had shown no reason for her symptoms – sound familiar?!  However I had no need to contact her, as at the end of the programme she saw a Haematologist in Leicester who diagnosed her with MCAS.  The fact she actually obtained an MCAS diagnosis in the UK was staggering.  Hurrahhhh 🙂

The third girl featured had had problems from childhood, initially mild then all of a sudden severe.  Her joints were severely hypermobile and, like me, she was initially diagnosed with Hypermobility Syndrome.  But she was far too unwell for that diagnosis, eventually ending up in a wheelchair and having blackouts and seizures.  Her family did some research and her Mum thought she fitted the diagnostic criteria for EDS, but there were no experts where they lived in Northern Ireland so they had to fly to London to the hypermobility clinic at St Johns & Elizabeth where she was indeed diagnosed with H-EDS.  She also saw Prof Matthias who diagnosed her with POTS which had been the reason for her seizures.

It was heartening to see both these girls diagnosed at a fairly young age, though they and their families had been to hell and back for several years first with none of the doctors they saw having a clue what was going on – a familiar story for most of us I would imagine.

The programme was badly titled ‘the boy who can’t stay awake’ and was on Channel 5.  I’ve looked online and it doesn’t seem to be available on the C5 catch up TV website, but it is being repeated on Sunday at 3.10am if you live in the UK and want to set your recorders.  For my readers outside the UK, the MCAS girl is featured in a Daily Mail newspaper article online here.

Histamine on the rise

This year has not been good histamine-wise and my histamine levels are currently at a three year high.  How do I know?  Here are my symptoms:

  • I’m getting up in the night to pee again, which is something I’d stopped doing.  Last night I had to get up 3 times.
  • I’m not sleeping, and my sleep was the best it’s been for 20 years.  I drop off OK but wake after an hour, then drop off again and wake after an hour……and so on until about 4am.  I’m exhausted after months of insomnia.
  • My skin itches all the time.
  • I have constant hayfever symptoms.
  • My GERD is out of control.
  • I have back pain so bad I can’t sleep comfortably, when the pain had all but disappeared.
  • My bowels are sluggish and irregular, after regularly pooping straight after breakfast for the first time in my life.
  • I’m tired but wired and can’t relax.

Funnily enough I don’t have hives, but I know they’re coming.  They seem to be the last symptom to appear then take weeks to get rid of.  I also haven’t seen an increase in headaches or migraines, which is brilliant but they do usually accompany insomnia for me.

I haven’t been under any more stress than usual, so I’m going to rule out stress as a cause of my histamine rise.  I have been eating too much chocolate than is good for me, so I’m going to stop the chocolate altogether and see if that helps, though I can’t see how a small increase in chocolate consumption could fill my histamine bucket to overflowing.  Other than that I haven’t made any major changes to my diet – I was going to re-introduce yeasted bread but found that I actually like my organic yeast-free bread better so I’ve continued with it other than the odd sandwich with regular bread now and then (which I’ve eaten all along, so no real change there).

The unknown factor is the hormone fluctuations I’m having due to peri-menopause (which is causing the chocolate cravings!).  I’d guess I’m in the final 3 years of peri which is the time when hormones are surging wildly then crashing, wrecking absolute havoc.  Many healthy women have insomnia, increase in itching and allergies, frequent urination, migraines and a host of other symptoms during Menopause so I’m not going to be immune.

Other than that I’ve no idea why my histamine level is increasing.  Despite eating “low histamine” my diet isn’t restricted as I made sure that if I cut something out, eg. tomatoes, I substituted them with something of equal value, eg. peppers.  No hard cheese but soft cheese.  No dried fruits but fresh fruits, etc.  So I still eat a wide range of foods and still make virtually everything from scratch.  I also try my very best to walk for up to half an hour every day, even when I’m in a lot of pain from my EDS or exhausted from my M.E. – exercise has so many benefits that I try religiously to keep my fitness up despite my many limitations.  I should relax more, but I’m so busy I admit I find that challenging, however I’m having a 2 week “stay-cation” over Christmas and might even impose an internet ban (then again, I may not have the will power 😉 ).

To be honest I’m a bit stumped.  I’ve done so well for three years now to suddenly see my symptoms returning is very disheartening, particularly when I can’t put my finger on why.

I’m going to increase my intake of olive oil as per the menopausehistamineconnection website, though I already use at least a tablespoon every day in my meals, and I’m plucking up the courage to try Sambucol (a concentrated elderberry extract which is high in mast cell stabilizing quercetin, + Vitamin C another mast cell stabilizer) even though I’m petrified to try supplements as I’ve reacted badly to almost all I’ve ever taken.  I’ll let you know if I notice any change over the next few months.