Author Archives: Jak

Testing for Histamine – BIG news!

I was lying in bed this morning listening to BBC Breakfast news.  They were doing a review of the newspapers and my ears pricked up when they started talking about a mobile phone sensor which could test to see if a food is off or not.   I know enough to realize that food goes off because it produces biogenic amines, of which histamine is one, and I was suddenly sitting bolt upright in bed feeling very excited!

Unfortunately the news presenter didn’t say which paper the article was in, so I simply Googled ‘phone sensor histamine 2018’ and found the research the piece was based on, which is taking place at the City University of Hong Kong.  The researchers were looking mainly at ways to test for spoiled foods, but I wanted them to know there was a huge world-wide patient population desperate for a way to easily test for histamine in foods because they suffered from either HIT, MCAD or both so I emailed the lead researcher A. L. Roy Vellaisamy PhD to briefly explain about us all and tell him how vital his device could be for us.

I couldn’t believe my eyes when, just a few hours later and on a Sunday, Roy mailed me back to say he’d read my blog and learned loads about how big an issue histamine in foods is for us.  Not only that, but he asked if I’d be willing to test his mobile sensor as they were trying to fine tune the device.  Is The Pope Catholic?!  Of course I’d like to test the device!!  Being able to test for histamine in foods on a mobile phone would revolutionize not only my, but most of your, lives.

I’m now just waiting to hear back about the logistics and what I’d have to do – I’ll keep you posted 😀

 

 

 

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Weekly roundup

My life has hit an all time low this week.  I’ve had to buy hemorrhoid cream.  Fifty years of straining to give birth to ginormous poo courtesy of my overly stretchy bowel has finally taken its toll and I now have a slimy, ridiculously itchy grape hanging out of my bum.  Somebody shoot me 😉

The entire week has been taken up with photography-related gubbins, so apologies if this post bores you all rigid.  Tuesday night saw the return of our monthly beginner’s workshops and I teach the opening class.  It was full and I think it went well despite the fact my voice was still struggling a bit from doing the Scottish talk the week before.

Wednesday night was our first league competition of the new season at Camera Club and I’m delighted to say I won joint first place with myself for my Raven Tower picture and the selfie I called ‘Behind the Veil’.  I was chatting to the judge afterwards and she said:
“the lady in the scarf is beautiful, who is it?”
“Me!” I replied.
So she looks at me with my glasses on, my grey roots showing, my wrinkles and turkey neck and the fact I hadn’t even brushed my hair that night and replied, shocked “really?!  Are you sure?”
Er, what was she trying to say exactly? PMSL 😀
“Yeah, thank God for Photoshop and the fact it takes 30 years off me!”
To be fair I don’t look anything like I do in my selfies in real life – I’m 51 not 21 😉

I think I may have mentioned the fact that I’ve decided to go for my next photographic distinction and the deadline for submissions is 22nd of this month.  It’s taken the entire summer to decide which fifteen photos to use, get outside opinions on how to improve them, get them perfect, print them off and then I’ve spent three days this week mounting them onto 50 x 40cm board.  I’m finally done and it feels like a huge weight has been lifted from my shoulders!

Of course, all this activity lately has sucked every ounce of energy I possess from every cell in my body and I now feel like road kill.  My histamine levels are really high and I need some down time over the next couple of months to stabilize my health.  Not only that, but I’ve been neglecting my parents a fair bit and poor Bertie has had to come and plonk his bum on the keyboard in order to get himself noticed.

I have now gone 50 days without a period, hurrahhhhhh!!!!!  I still have daily, low level period pain though, backache and I’m seriously not sleeping but for the first time in 40 years this month I’ve been spared excruciating endo-related period pain and for that I am truly thankful 🙂

 

 

 

Visual disturbance research

A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation.  I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you.  There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉

VISUAL SNOW

The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise.  Luckily for me mine is only  mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits.  Mine is white snow but for other people it’s multi-coloured.  Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):

BLUE FIELD ENTOPIC PHENOMENON

I noticed this for the first time earlier on this year and it totally freaked me out.  It was a lovely, sunny spring day and my friend and I were sitting down by the river.  I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms!  My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine.  I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina.  I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:

FLOATERS

I’ve talked about my floaters before here on my blog.  Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark.  Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision.  Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:


The scary thing is that there is currently zero research being done on floaters.  None.  Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦

MIGRAINE AURA

I started with aura migraines in my late teens and have been having them ever since.  The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight.  They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine.  I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out.  When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good.  Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

  • Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)
  • Difficulty seeing in low light
  • Halos round lights at night – particularly bad when driving
  • And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters.  It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man :-/  However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.

Weekly roundup

I’m kinda glad this week is over.  Although I really enjoyed doing my photography talk up in Scotland it was months of preparation and worry about how my health would hold out which has felt like a lot of pressure and my mast cells don’t do pressure – I’ve had hives on my bum for weeks.  My Mum & Dad (well, my Mum……..my Dad wouldn’t think to!) bought me a card and a bunch of flowers to say “well done” and I was really touched.  Due to Mum’s alcoholism she hasn’t done anything like that in years because she hasn’t cared less about my life.  Now she’s massively cut down on her drinking she does seem to be much more engaged.

I am on day 43 of my menstrual cycle.  Dare I hope that this is the beginning of the end and I’ll finally be saying goodbye to The Curse which has tortured me for 40 years?!  Every day for the past fortnight I’ve felt like my period is going to start as I’ve had bloating, migraines, period pain, backache and exhaustion but as yet there is no sign and my boobs aren’t sore – they’re always sore leading up to my period so that’s weird considering I’m having all the other symptoms.  My back pain is terrible, though, the worst it’s been in years and I have had horrible shooting nerve pains in my legs and feet – I’ll be lying there in bed and all of a sudden it’s like I’ve been stung by a cattle prod :-/  A couple of years ago I had the same pains in my boobs and was sent for an early mammogram but all was fine and they eventually disappeared, so I’m sure it’s ‘just’ my hormones.

My Dad was due to have an echocardiogram of his heart on Thursday, which is basically an ultrasound to check the structure.  I offered to go with him but as he wasn’t seeing the consultant or anything he said he’d be fine and my Mum went instead – he’s had an ultrasound on his gallbladder & kidneys so knew what to expect.  Afterwards I rang to see how it had gone and he said “Grand.  She put the sticky pads on my chest and I was in and out in 10 minutes” which I knew wasn’t right.  The sticky pads are used to do an ECG (ie heart rhythm trace) and as he’d already had a 4 day ECG done he didn’t need another.  I quizzed him a bit more and he was adamant that he’d had the sticky pads and no scan, so I phoned the hospital to find out what was going on.  Sure enough, he’d had a scan and they had the results on the screen.
So I asked him again.  “Did the lady use a wand or anything on your chest Dad?  Was there a screen next to you?”
“Oh yes, she pressed into my ribs, then I had to lay on my side and she pressed again.”
“And you didn’t think to tell me this when I asked the first time?”
“Should I have?”
Bless him, you can’t trust a word that comes out of his mouth.

Today I really must do some housework because the place looks like a bomb has hit it.  I haven’t touched housey-type jobs in 3 weeks as I was conserving energy for my talk but I can’t put it off any longer.  There’s one huge obstacle though…………….I fucking hate housework.  And paperwork.  And having to put away my garden furniture for winter.  And clipping the dog.  And scrubbing poop off the bird feeders.  And changing halogen bulbs in recessed ceiling lights (why in God’s name has that been made so complicated?!).  And ringing the electrician to come and look at my faulty outside light.  In fact, anything which doesn’t involve taking photos 😉  I hope the Universe knows that I need a lotto jackpot win so that I can employ a servant to do all this boring shit for me and sorts that out tout de suite if not sooner!

The Talk

I’ve barely slept a wink all night because I am ridiculously over-stimulated but I wanted to share my experience with you because I think many of you will relate to how much doing something out of our comfort zone takes out of us.

Camera clubs meet weekly and do a variety of different events – competitions, workshops and they hire speakers to talk about aspects of photography and showcase their images.  About 3 months ago I was asked by a Club in Scotland to be their guest speaker for the evening, a prospect I found terrifying but also exciting, so I agreed but with huge trepidation.  It meant a 2 hour round car journey (a friend from my Club said he’d drive me, God love him), in the evening when I am physically and mentally at my worst (I usually go to bed around 4pm and stay there until the next morning) and I had to speak for about 1½ hours in front of a room full of 50 strangers many of whom were better photographers than me!

I’ve spent the last 3 months preparing, in the end putting together a slideshow of 86 photographs.  I then spent 3 weeks practising my speech over and over and over, as it needed to go to time and I wasn’t using any notes (a huge deal considering I have a brain injury and my memory is shot!).

The thing I worry about most when I’ve agreed to do something which I can’t back out of is how my health will be on the day.  I never know until I wake up in a morning how I’m going to feel and I frequently wake with a dislocation or a migraine so severe I literally can’t move.  Due to the menopause, my health is particularly up and down at the moment and I have stressed for weeks about how I was going to feel on the day of The Talk.  For days beforehand I didn’t dare to do anything, trying to conserve my energy and ward off serious injury.

I’ve actually had 4 or 5 relatively ‘good’ days recently, though I’ve barely slept, but I woke on Tuesday feeling poisoned, achy, my limbs were like concrete and I had zero energy.  My period was due 12 days ago but, despite period pain, backache, exhaustion and migraines, it had not put in an appearance and I had a sneaking suspicion that Aunt Flo would arrive the day I was due in Scotland :-/

Thank the Lord I woke Wednesday morning not only period-free but with slightly more energy than the day before, though I yet again hadn’t slept and by lunchtime was ready for a nap……which I didn’t dare have, because if I sleep at all in the day-time I wake poleaxed and feeling absolutely terrible.  So I battled through the afternoon with my eyes burning and my head swimming with fatigue, dropped the dog off at my parents’ at 5.30pm and set off with two friends to Scotland.

I’d decided not to be nervous.  I’d agreed to do this thing and having done so I was determined to simply relax and enjoy it and I managed that until the Chairman started to introduce me which is when the nerves kicked in, my hands started to shake and my heart flipped flopped around in my chest – not good for someone with dysautonomia who is prone to feeling faint!  But I quickly settled in to my talk, which was supposed to last for 45 minutes before we broke for coffee.  Only I must have missed some bits out because I finished after only 35 minutes, but because it had all gone by in a blur I couldn’t remember which bits I’d missed out!

I had to try and extend the second half of the talk to make up the time and thankfully little snippets that I’d missed in the first half came back to me and I was able to include them.  I’m delighted to say that I must have done OK in the end, because people were literally queueing to speak to me afterwards to tell me how much they’d enjoyed the night and I was immediately booked to go back – not that I’ve agreed as yet!

Although exhausted on the journey home I was also high as a kite with adrenalin and having been so massively over-stimulated.  I didn’t get home until gone 11pm and have literally had 2 hours sleep as my brain simply couldn’t switch off.  I’ll be tired but fine today though my head is already starting to thump, but tomorrow I know I’ll feel like absolute shit and it might be Monday before I feel even half-way human again.  But on this occasion it’s been worth the payback.  I feel a ginormous sense of achievement and I know I subtly educated the audience on EDS, M.E. and invisible disabilities, not to mention the sexual abuse and harassment of women through my image which depicted the #metoo campaign – you could literally hear a pin drop in the room when I talked about my experience of being a 17 year old model and the things which happened to me.

I’ve worried about this talk for three months.  Worried I would wake on the day too ill to go.  Worried I would have a hot flush or faint during the presentation, or get totally muddled and not remember what I was saying.  Worried I’d use the wrong words without realizing (which happens often!) and make a total fool of myself.  I can’t tell you how relieved I am that it all went off OK and, more importantly, that the audience seemed to like it 🙂  I enjoyed it too, despite all the worry and work and inevitable payback, and it’s at times like these that I get hugely frustrated by my health and the limitations it places on my life because I’d love to do more of these kinds of events but know, if I’m totally honest with myself, that it’s simply all too much.  But at least I have spent one night having my voice heard, for which I am hugely thankful.

 

 

Uninspiring

Although my upcoming talk this week is on photography I’m using the platform to make some subtle points about disability.   My neighbour used to be a keen mountaineer, only he got stuck up a mountain in a blizzard for 24 hours and lost all his fingers, both thumbs and part of his nose to frostbite and had to have his leg amputated as it was badly crushed.  He is the poster child of someone who is disabled.  I, OTOH, will look totally fit and well as I stand before my audience yet the ‘disabled’ guy runs 3 miles a night on his artificial leg and still goes mountaineering while I struggle some days to get dressed and only manage a shower once a week.

I asked if I could take a photo of my neighbour for my talk and he agreed.  The resulting image was put on facebook and immediately I received comments on how brave and inspiring he is because of all he achieves despite the challenges his disability poses.  I don’t disagree.  Despite having no fingers and only one leg he runs a thriving upholstery business, has 4 children and has so far been on three holidays this year………while I lie in my bed skint and alone having not had a holiday since 1996 because I’m way too sick to travel.

I’ll never be called inspiring or brave.  Not that I would want to be called brave simply for enduring the shitty hand I’ve been dealt and I know it also gets on disabled people’s nerves – it’s not like we’ve deliberately chosen our lives like someone chooses to run into a burning building – but the point remains that there is acknowledgement of overcoming adversity with disabilities which is absent when one is chronically, and more importantly untreatably, ill. It is, of course, a different kettle of fish when it comes to The Big C because cancer patients are routinely thought of as ‘brave’ and ‘inspiring’ and when they’re cured by modern medicine they are deemed to have ‘won the battle’, words which are all too often missing when describing the chronically ill.

If healthy people acknowledge me at all it’s as lazy, weird, anti-social, weak or a scrounger and the words “you poor thing” have actually been said to my face.  The strength it takes to live a life of chronic illness is never acknowledged let alone applauded.

I may not have four children (who, btw, live full time with their mother) but I do have a dog and two elderly, sick parents to look after.  I may not climb mountains but I create with my photography.  I blog (nearly 1 million visitors!), I volunteer, I teach…………yet he is ‘brave’ and ‘inspiring’ while I am ‘weird’, ‘lazy’ and ‘a poor thing’.   Why is that I wonder?

 

Weekly roundup

Apologies for the fact there was no blog post this week.  I sat down to write one on a couple of occasions and found I just didn’t have much to say.  After 5 years of blogging twice a week sometimes I don’t have anything new to add that hasn’t already been said and this week felt like one of those times.  I’m sure I’ll be back to my chatty self soon.

I’m feeling very emotional this morning.  I had a lovely day yesterday, but it was a big day and whenever I’ve done too much and am over-tired my emotions take on a life of their own (called emotional lability).  I woke up obsessing over something I said to a family member nearly 3 years ago and it’s making me feel sick to the pit of my stomach.  My rational brain tells me to stop being bloody ridiculous, it’s done and over with and there’s nothing I can do about it now but my overly emotional emotions won’t give it up and I know I’m going to spend the day wanting to crawl out of my skin.

The reason I’m so tired is that I went through to the city yesterday and not only is the 60 mile round drive tiring I find all the hustle and bustle exhausting.  I thought I’d do a bit of shopping for an hour but I wandered around like a lost puppy gazing at all the bright shiny things and felt totally overwhelmed.  As a 51 year old with a saggy arse and ever-expanding waistline who lives in the middle of nowhere and has been largely housebound for a quarter of a century fashion means nothing to me.  I gazed at all the boots with heels on like they were alien spacecraft (my back barely allows me to wear flat shoes let alone 2″ platforms :-/ ) and the clothes looked either uncomfortable or cold (why do men get to wear thick, fishermen rib, roll neck sweaters down to their butts and women have to wear see-through jumpers with 3/4 sleeves and scooped necklines which barely reach their waist-band in the middle of winter?!).  The price of everything also made my eyes water and I just know I’m going to be one of those women who spend the rest of their natural days in leggings and fleeces from Matalan 😉 .  At 5.30pm I’d arranged to meet my bestie for dinner and really enjoyed it.  She was on great form and we had a lovely meal, followed by a show featuring Robin Ince from Radio 4.

I have a photo competition coming up with the theme of ‘town or city-scapes’.  I am not a landscape photographer and despite the looming deadline had not got one picture to enter, so I took my camera with me and got some shots of the city at night on the way back to the car – they’re absolutely rubbish but I least I have something to enter.

Wednesday was also a big day for me as I’d agreed to judge my first ever competition at my Camera Club.  I’d been given the images before-hand so I could award them all marks but it was still daunting to have to stand in front of 40 people and critique each image, trying not to be negative but still giving feedback on how each picture could be improved.  I think I did OK though and got some nice comments afterwards 🙂  This Wednesday is an even bigger day, as I am guest speaker at a Scottish Camera club and have to talk for nearly 2 hours in front of a room full of complete strangers – gulp!

I don’t think my emotions or energy are being helped by my schizophrenic hormones.  Last month I had a period on day 12 of my cycle and this month, despite feeling like it’s going to start any second, I am currently on day 36 of my cycle with no show from Aunt Flo.  I am waking every sodding night at 4.30am and not getting back to sleep.  Even last night, when I didn’t get to bed til nearly midnight, I was still wide awake at 4am.  FFS.  I have also had another 2 brutal migraines this week which weren’t helped by the fact the road outside my house is being resurfaced and men with drills spent 8 hours one day taking up the old tarmac.  I can’t tell you how ready I am for this menopause bollocks to be over.

A couple of weeks ago my friends kids came to model for me and I’ve ummed and ahhhd over what to do with the resulting images.  I still haven’t decided how to edit the older girls’ picture but finally came up with an idea for the younger one’s which I’m happy with – I’m calling it Evacuee.

I’ve had an incredibly busy summer and have been preparing for my talk this week for months (I’m showcasing nearly 90 pictures!), so even though I’m excited to do it I’ll also be glad when it’s over and I can have a well earned rest.  I feel I’ve been neglecting myself recently and am in imminent danger of a relapse so I’m planning on having a quiet run up to Christmas to try and claw back some energy – famous last words!