Tag Archives: myalgic encephalomyelitis

Weekly roundup

I’ve had another busy week.  I still can’t work out why my life is so constantly hectic, though the fact that because of my energy limitations I have to fit an entire day into 7 hours probably has a lot to do with it!

Tuesday was long, stressful but ultimately exciting.  I picked up my new little Yaris electric hybrid car!!!  I found it at Toyota online but it was at a dealership 60 miles away, so I faced a 1¼ hours drive there and back on a notoriously crap road to collect it, but I love it and think it was worth the trip.  The dealership have been a bloody nightmare though.  From day one they  have lied and tried to rob me.  The car hasn’t been serviced for 15 months and had the wrong tyre pressures.  At one point on Tuesday I had a heated argument with the sales manager after he stood in front of me and lied to my face, which made the whole thing incredibly stressful.  So after I got home I made a formal complaint to the Managing Director of the group at their Head Office.  The car itself is fab though, if a little complicated, and I’m still figuring out how everything works.  When on full beam the headlights dip themselves when they sense oncoming traffic, the car also senses road speed signs and warns me if I’m driving too fast, it has automatic climate control, keeping the car at a set temperature, and it senses if you’re about to crash and automatically applies the brakes (would have been handy back in October!).  It practically drives itself 😉

Wednesday night was the first Camera Club after our Xmas break and I gave a talk on my DPAGB distinction experience.  I’ve had a dry, tickly cough, which I think is reflux related, for about 6 weeks now and it’s driving me insane so I bought some Pholcodeine cough medicine to try to suppress it.  Knowing how I react to painkillers, and knowing the medicine contains codeine, I tentatively tried a couple of 5ml spoonfuls during the day and all was fine, so 20 minutes before my talk I took another 5ml spoonful……………and had an anaphylactic reaction.  FFS.  So I gave my speech with my heart hammering, my face flushing, my brain in cramp and feeling like I was going to pass out.  I just told everyone I was having a hot flush because it’s easier than trying to explain about MCAS :-/  The shitty thing is that I’m still coughing and can’t take anything to settle it.

The positive news of the week is that I’ve slept brilliantly 😀  This happens so rarely it’s been like a mini holiday from my illnesses and mentally I just feel so much better after having several 5 to 6 hour blocks of blissful uninterrupted kip.  Whoop whoop.

Friday I took Bertie to a new groomers to have a haircut.  When I first got him I tried a groomer in town but had a bad experience, so for the past 8 years I’ve been clipping him myself.  However my joints, and back, are now so painful I simply can’t do it any longer.  The new groomer seems nice and Bertie seemed happy enough when I collected him, so hopefully I’ll be able to use her again.

Today I’m hoping to finish off a talk on studio lighting I’m booked to do next month.  It’s taken ages to put together and during the next couple of weeks I need to practice it with my lighting props so that I can do it to time, but it’s been fun to do and because I have to know the ins and outs of the subject it’s also forced me to learn new stuff which is always a good thing.

I’ll finish with a little teaser.  I have an update on home testing for histamine in foods to share with you this week, so look out for that post!

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Weekly roundup

I’ve found this week physically quite tough.  I have been ovulating and it’s now become as painful as my actual period.  I have felt nauseous for 4 days, to the point where I can barely eat.  My entire insides hurt – my ovaries hurt, my bowel hurts, my stomach hurts, my bumhole hurts (I know, TMI!) and I have sharp stinging pains into my pubic bone.   I pray to God every day to make my periods, and therefore my endometriosis, stop but so far He’s not listening (he’s a man, what can you expect?).  To add insult to injury I have had wicked hay fever for a month, with very sore eyes and a sneezy, itchy bunged up but runny nose.  Both my best mate and I have been getting hay fever in December for about the past three years and we can’t work out why.  The theory is that you’re secretly allergic to dust mites, or your pets, and because you have all your windows shut in the winter it makes the allergy worse but I don’t buy it.  I close my windows against bad weather around the end of October, but I don’t get hay fever until usually the week before Xmas and it lasts well into January.  I am allergic to pine trees (just touching them brings me out in a rash), so I’m wondering if it’s because of all the Xmas trees which are cut down, displayed, then shredded?

Tuesday night was the last evening of our beginner’s photography class, which we hold monthly during the winter.  I help teach the class, along with two other Camera  Club colleagues, which I enjoy but oh boy does it take it out of me and to be fair I’m glad it’s over with for another year.  Doing anything after 4pm in the afternoon simply kills me.

After two months of wrangling with my insurance company over my tiny little car prang we finally agreed a settlement, which means I can trade-in my current car and pick my new car up this week.  I am so excited!  However, today I need to clean the inside of my current car out.  Bending is really painful for my back and hips, and trying to hoover all the nooks and crannies when my left shoulder and rib are already stupidly sore will not be fun.  These are the times when having a Husband would come in handy 😉

The reason my back, hips, ribs and shoulder are currently so painful is that I did something about my New Year’s Resolution.  I accepted that I am not going to find the house of my dreams any time soon with the money I have so I decided to revamp my spare bedroom and dedicate it to all things photographic.  I’ve approached my neighbour to buy a tiny piece of waste land he owns at the top of my drive and if I can put a large shed on there I can move all my stuff-that-I-don’t-want-to-get-rid-of (like my spare bed) in there out of the way.  So far, though, he’s ignored my letter and I have all my stuff-that-I-don’t-want-to-get-rid-of piled in a corner of my lounge!

Three months ago the outside intruder light on the side of my house stopped working.  It happens regularly, so I decided to replace the ancient light with a new LED one.  All the wiring was there it was simply a matter of switching the lights over which would take about 20 minutes, but could I get an electrician to come and do such a tiny little job?  That would be a big, fat no and I have been stumbling around outside in the dark for yonks.  My cousin’s husband is an electrician but he’s been poorly so I didn’t feel I could ask him, however I heard this week that he was feeling much better so I asked him over and he did it no problem (and didn’t charge me, thank God as I’m skint).

We still haven’t heard from the hospital about my Dad’s lumbar puncture.  He was seen by the emergency clinic so I’ve no idea why we’re having to wait so long – it’s yet something else I’m going to have to chase up *sigh*.

I honestly thought I had nothing much on in the New Year and would have a restful January to recharge my very depleted batteries.  No such luck.  Life constantly throws curve balls at me and I just live in a permanent state of absolute and utter exhaustion.  This year I am determined to have an actual holiday – I think it’s the only way I will be able to have a proper rest away from the demands of running a home and caring for my parents.  I’d better start saving!

 

 

Weekly roundup

As you know from my previous post, Monday I took my Dad to see the neurologist about his leg weakness, hand spasticity and dizzy/vomiting spells.  The Consultant thinks none of it is down to his spinal stenosis and is more likely to be down to his MGUS (a precursor to blood cancer) and has referred him to Haematology.  My Dad doesn’t understand any of what’s going on, has no clue what large fibre neuropathy is and just thinks he’s going to have his decompression surgery and be totally back to normal in 3 months.  He’s going to be devastated when that doesn’t happen 😦 The Hospital rang this week to say he’s booked in for his surgery on New Year’s Eve!  I just hope the Surgeon hasn’t been on the cooking sherry over Christmas!

I have been feeling really rough all week.  My sodding periods are making me feel awful – exhausted, very muzzy headed and both my back and endometriosis pain is off the charts 😦  However, my bestie drove through on Tuesday and we went out for lunch, which was lovely and helped take my mind off everything.

Weds was the last Camera Club meeting of this year.  We had a quiz and a little buffet and I had a fun night, though I still miss my friend Linda who left.  We now have a break for 3 weeks over Christmas and although I’ll miss the company I won’t miss coming home at 10.15pm in the dark, howling winds and sleet.

Speaking of Camera Clubs though, if you remember I was guest speaker at a Scottish Club in October and must have done OK as I’ve been asked to go back again next Season!  I’m not sure I have enough new material for another 2 hour talk, so have said I’ll think about it and get back to them.

Friday I collected my car from the body shop after my little prang.  The alloy wheel is still all scuffed though, so now I’m going to have to ring the insurers and asked why they didn’t request that be put right.  It’s totally pissing me off because my car is 5 years old and I’d half agreed to trade it in for a newer one until this happened, so now I can’t do anything until it’s all done and the paperwork is sorted.  If the car I have my eye on is sold in the meantime I’ll be well hacked off.

Today my Dad is going to Newcastle for yet another MRI scan, this time on his upper back and neck to see if there is any further stenosis or lesions on his bones.  I’m making my brother take him though being as though it’s the weekend and he’s not at work – I was in agony for a week last time I did the 180 mile drive.  While he’s away my Mum has asked me to take her to all our relatives graves to lay Christmas wreaths as neither she nor my Dad can bend now to do it.

I received a Christmas card and letter from one of my friends with M.E. this week.  We got ill at roughly the same time, the only difference being my friend was a teenager.  She is now 40 and has been virtually bedridden for over 2 decades.  She is still unable to stand for more than a minute without passing out and is currently lying, yet again, in a dark room and without sound otherwise she has a seizure.  My heart broke for her, yet I was selfishly thankful I was no longer in that position myself.  I have no idea how she’s kept her sanity all these years or the will to keep fighting.  Patients with severe M.E. are the strongest people I’ve ever met – unless you’ve been there you have no idea the tortures of hell this disease can inflict and the strength it takes just to get through the next minute let alone a whole day/week/month/year/decade.  People ask me how I can remain so cheerful and bubbly despite my health and other issues and the reason is that I am so grateful to no longer have severe M.E. and to actually have a life, any life.  I can still do stuff, despite my symptoms, when I couldn’t do anything when I was severely ill with M.E., and for that I am grateful every day of my life.

Mast Cells & M.E.

Leading Doctors in the M.E. field are slowly coming to the realization that Mast Cell Activation Syndrome (MCAS) is common in their patients, with some finding issues with mast cells in more than 60% of the people they test (see this post by my friend and fellow blogger over at Rag & Bone Shop of the Heart).

Ever since I first learned about MCAS I knew, for sure, it was implicated in M.E. as I explain in my Canary post.  In particular it explains why POTS/orthostatic intolerance is almost universal in M.E. patients, why reactions to foods, drugs and the environment are so prevalent and why nothing is ever found on testing, despite some patients being profoundly ill (no-one has been testing for mast cell mediators!).

Where I disagree with most clinicians looking at the link between mast cell activation and M.E. is that doctors think it only applies to a sub-set of patients, while I think it is implicated in the disease in all patients.

I am convinced I was born with MCAS.  I think it can either be congenital (in my case it seems to be linked to my hEDS) or acquired later in life due to an immune event like a virus, vaccination or surgery.  I have photos of myself as a baby flushing my cute little face off and have had dermographism ever since I can remember, but I had no clue I had MCAS until I was in my mid forties because it wasn’t a problem until the peri-menopause set it off.  My point being it can go undetected in the majority of patients until something happens to rocket it into orbit.

For a decade I was life-threateningly ill with M.E., yet I could eat whatever I liked, take most medications without a problem, didn’t have hives, asthma, itchy skin or any of the other symptoms associated with MCAS.  But that didn’t mean it wasn’t there, lurking.

Looking back I’d flushed all my life (I didn’t know it was flushing, I had no idea why I went bright red all the time!), I could skin write and I’d been unable to drink alcohol without my face swelling or passing out since developing M.E (which I now know is grade III anaphylaxis), but other than that there were no obvious signs of mast cell mediator release.

In my mid thirties, after having M.E. for ten years, I started to become allergic to medications, many of which like paracetomol (tylenol) and travel sickness tablets I’d taken all my life.  I developed a tight chest around certain smells and the print ink off newspapers made me wheezy.  I also developed severe migraines almost out of the blue, hay fever each spring which I’d never had before in my life and started getting itchy lumps on my bum which I had no idea were hives.  I also had what doctors called either “A-typical seizures” if they believed in M.E., or “panic attacks” if they didn’t believe in M.E., but which I now know was anaphylaxis.

In my mid forties I started peri-menopause and all hell broke loose virtually overnight.  It was then I began reacting to all medications and nearly every food I put in my mouth, to the point where I honestly believed I’d die.  I’d had M.E. for 18 years at this point though and although there had been hints all along if I’d known to look for them, my mast cells hadn’t gone berserk enough for me to be really troubled by them or to link them to my M.E. in any way.

All my friends with M.E., without exception, have an allergy of some kind and the more severely affected by M.E. they are the more allergic they seem to be.  My best mate has never been severely affected, yet still has asthma, hay fever, POTS and auto-immune diseases (confirmed Coeliac in her thirties despite having no symptoms whatsoever at the time and confirmed Palindromic Rheumatism in her forties after suddenly developing swelling joints and skin problems).  It’s way too much of a coincidence that nearly all long term M.E. patients have, or develop, allergic reactions, many have auto-immune diseases and all have some kind of orthostatic intolerance.  There has to be some kind of missing link and, for me, that’s misbehaving mast cells.

It’s the only thing which fits.  It’s the only thing which causes seemingly unrelated systemic symptoms like insomnia, back pain, diarrhea, migraine, food allergies, breathing problems, fatigue, that tired-but-wired feeling, nausea, inflammation and on and on and on.  And of course no-one has been testing for it, which is why no-one has been able to find a test for M.E.

So if mast cells underly M.E. why don’t all patients tested have evidence of mediator release?  I’m just a patient and no kind of expert but I do have a couple of theories:

  • Because there is no test for M.E. lost of people are diagnosed with the disease that don’t actually have it.   I know this because of all the ‘cured’ stories I read in the press from people who clearly didn’t have M.E. in the first place, yet were diagnosed by GPs because the disease has become a dumping ground for anyone with unexplained fatigue.
  • Despite being seriously ill, having anaphylaxis every time I ate and having a bum covered in hives my histamine test when I saw Dr Seneviratne was still within the normal range!  Very high but not quite high enough to be considered abnormal.  I didn’t have any other tests, like leukotrienes and chromoglanin A, done because five years ago these weren’t available in the UK and I was only diagnosed with ‘probable’ MCAS based on my history and symptoms.  So it doesn’t take a rocket scientist to work out that the current mediator release tests simply aren’t sophisticated enough.  They’re looking for acute mediator release, not the chronic mediator release experienced by MCAS sufferers.  Maybe we need to re-think what the maximum levels are, or maybe we need to repeat test weekly over a period of say a month or two?  I’d love to be tested while I’m having my period because my reactions are so much worse then.

Being one of the first people to talk about the link between mast cells and M.E. I am delighted that the medical profession finally seem to be catching on and that M.E. patients in America at least are now being more routinely tested for MCAS.  We really need a large scale study of severely affected patients though, and much more sophisticated tests to check for chronic mediator release, but at least we finally seem to be making a start.  “The journey of a thousand miles begins with one step”.

Weekly roundup

Apologies if this post makes no sense, but I have a brain that feels like it’s been involved in a car accident and I think I’m starting with a hormone induced migraine :-/

The reason I am feeling like road kill is that I made an epic 600 mile journey to London on Friday to see one of my photographs in its very first print Exhibition.  From over 40,000 people I was chosen by the Photographic Alliance of Great Britain, along with 59 others from across the UK, as one of this year’s best amateur photographers and my work will be shown in a Gallery in the Capital for the next two weeks.  Holy Shit Bat Man!!!!!

My lovely friend John from my Camera Club offered to accompany me (for which I was hugely grateful, as the thought of going alone was daunting) and we caught the 8am train from Cumbria, getting into London at 11.10am.  We then caught the tube to Southbank, where we stopped off for lunch at a nice cafe, before making our way to the Gallery for the private opening ceremony which lasted til 4pm.  Getting back to the train station during rush hour on a Friday was an experience (!) but we made it and were soon winging our way back up north at the end of a brilliant, if ridiculously tiring and physically challenging, day.

At 9pm home was in sight when the train manager came over the tannoy to say that high winds were forcing him to apply a speed restriction to the train, and instead of travelling at 125mph we were having to crawl along at 50mph, causing a delay of over an hour.  My back already felt like it was going to snap in two and there was no way I could sit for another 90 minutes, so John had to move seats and I had to take my boots off and lie down as best I could across two tiny, hard chairs with my feet dangling in the aisle annoying everyone who wanted to get past!  We eventually got back home at 10.10pm, when I had to collect my dog from my parents’ then drive the 20 minutes home in lashing rain and howling winds.  I’ve never been so glad to get in my pjs and into bed in my entire life!  However, I DID IT, yayyy for me 😀  Of course, I will be suffering the consequences for days, if not weeks, but who cares right?!

On to other news.  I am currently driving a courtesy car as mine is in the body shop being re-sprayed after my little prang last month.  The courtesy car is geared though (stick shift), not automatic like mine, and my legs are protesting already!

My Dad was really poorly on Wednesday evening with one of his ‘dizzy/vomiting’ episodes.  The poor man projectile vomited for nearly 2 hours and during these attacks he literally goes off his legs and can’t walk.  Thank God we are seeing the Neurophysiologist on Monday who I am hoping can shed some light on what is going on.  We still don’t have a date for his back surgery though, so it’s looking unlikely it will happen before Xmas.  Big sigh.

Friday was my last big event in a year which has been brilliant, but stupidly over-busy, and I am looking forward to a much needed rest and the opportunity to recharge my very flat batteries.  Famous last words 😉

 

 

 

 

Weekly roundup

Everything I do has to be paid for and, as expected, last Sunday’s day in Lancashire took its toll and I spent Tuesday crippled by a banging, sickening migraine which lasted til Thursday.  Yay.  To add insult to injury my parents haven’t even got me a ‘well done’ card for passing my distinction let alone a bunch of flowers which, if I’m honest, is kinda hurtful especially when they did both for my niece recently when she passed her police exam.  It’s almost as if, because I’m ill, nothing I achieve means anything and isn’t real despite the fact that, because I’m ill, it’s twice the achievement it would be if I were healthy!  At least some of my Camera  Club buddies are happy for me and took me out for a little celebratory lunch on Friday.

Friday night I slept for 8 whole hours and only woke once.  No big deal you might think, except the fact it’s virtually unheard of in my house.  Before I got ME I never had trouble sleeping, but once of the first symptoms of the disease for me was insomnia and I have struggled to sleep for nearly a quarter of a century.  When I started my low histamine diet it definitely helped my sleep situation, but then along came peri-menopause and it all turned to crap again.  And just recently my awful back pain has made the situation ten times worse and sleeping in my house is like catching fog.

I am bone weary and at the moment can barely keep my eyes open past 9pm.  However, no matter how shattered I am I still only sleep for about 5 hours and during that time I’m awake at least 2 or 3 times, often having to get up to pee in the early hours.  Friday night I was particularly shattered and absolutely desperate for sleep, but as I lay in bed watching TV with my back killing me I knew that yet again it wasn’t going to happen.  In desperation I tried every trick I knew to get my back to settle down – having a warm bath, slathering myself with Ibuprofen gel, putting on my TENS machine even though you aren’t supposed to sleep with one on, and wearing both my SI belt and my back brace, despite the fact it squishes my intestines.  I was probably the most comfortable I’d been in ages and, amazingly, actually nodded off watching tv at about 8.30pm, something I hardly ever do.  I was startled awake at 11.45pm by the telly blaring, so got up for a wee but went straight back to sleep and the next thing I knew it was 5.30am.  Whoo-hooo!!   I mentally felt like a different person Saturday morning.  Last night was business as usual though and this morning I feel like I’ve been dragged through a  hedge backwards :-/

I woke up Saturday morning with my wrist swollen, red and itching like a bitch.  No clue why and I’m just  putting it down to one of those mast cell things.  My arse is covered in hives and has been for a month now so my histamine is obviously pretty high.

Yesterday was the 1st of December, so Bertie opened door number one on his doggie advent calendar and ate the carob chocolate inside and I put my Christmas tree up so the lounge is now all sparkly with lights.  I find Xmas difficult being on my own and sick, but I still make the effort to put up decorations even though I never have any visitors.  *I* see them and that’s all that matters.

Today I’m going in to town to put my parents’ decorations and tree up even though it’s the last thing on earth I want to be doing.

This week is another big week.  I am off to London on Friday to the Gallery opening where my photograph is being exhibited – I am sooo excited!!!  I’ll tell you all about it in next weekend’s roundup.

Weekly roundup

I did it!!!!!  I gained my second photographic distinction and can now place the letters DPAGB after my name 🙂  It was a stupidly long day – I set off from home at 6.50am and got back at 8.50pm – but I made it and am both relieved and chuffed to little meatballs.  The fifteen images I used for my award can be found here.

As you know, the day before my back was killing me and my neck was so painful I could barely turn my head.  However, I woke on the morning of the distinction and the neck pain had literally vanished overnight despite the fact I only managed four hours sleep.  It’s not the first time I’ve gone to bed in agony and woke to no pain at all and it totally baffles me as to what on earth is going on.  My hip and SI pain were also quite good on the day (though they’re crap again this morning), so I only really had to cope with the mid back pain which was a good job because after 7 hours of sitting on hard metal chairs my back felt like it was ready to snap in two.  I also struggle to be upright at all for any length of time, so to have to sit up for an entire day was a huge challenge and a couple of times when it got hot in the auditorium I felt like I was going to pass out – I’m so grateful that didn’t happen because landing with a bang on the floor would have been mortifying in front of hundreds of people 😉

I’ve set myself too many challenges in respect of my photography this year – not only have I been working towards this distinction I’ve also been working towards an international distinction and am just about to submit my portfolio for that.  Then there’s been various important nation-wide competitions, judging my first International photography Salon, doing my first talk at a Camera Club and of course still doing my usual Camera Club competitions.  It’s too much and my health simply can’t stand up to that level of stress and activity, so I’m hoping to just chill until the New Year and rest up.

Of course, resting assumes my Dad doesn’t go in for his spinal surgery about which we have heard nothing.  The Surgeon said he was hoping to do the op before Xmas but before that he needed a nerve conduction test and another MRI scan about which we have heard diddly shit.  With less than 4 weeks to the holidays I really can’t see the operation happening and as a family we are pig sick because my Dad is suffering massively and can barely walk.  He’s had about as much as he can take bless his heart.

Well, I must get up and dressed despite being completely knackered.  I can’t find anyone to walk Bertie on Mondays and Fridays so no matter how I feel I have to get my thermals on and take him out.  At least it’s dry, despite the fact it’s -2C outside, and I’m sure the fresh air will do me good – that’s what I tell myself anyway 😉