Category Archives: Myalgic Encephalomyelitis

One In A Million

Overnight my blog received its 1 millionth visitor.  It’s gobsmacking to me.  Seriously gobsmacking.  Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors.  Mind-seriously-blown.

I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD.  I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone.  And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.

My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to.   I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me.  The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂

I know I’m not everyone’s cup of tea.  I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing.  So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.

It’s also been levelled at me that I don’t like anyone to disagree with me.  Quite correct.  It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have.  I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong.  I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”.  These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.

My blog has evolved just as I have evolved.  My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed.  I don’t pretend to know everything about everything.  I know enough to manage my diseases and that’s all.  Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉   However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.

Blogging so openly and publicly about your life is not for the faint hearted.  You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude.  But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂

Thanks to you all for caring about me and my struggle.  For sharing in my journey and for sharing yours with me.  You’re one in a million and I am thankful for you.

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Weekly roundup

By next weekend I’m hoping to have some BIG news to share with you!  I’m really excited, so keep an eye on your inbox at the end of this coming week.

Monday my cough was so bad I had to ring my doctor.  She palmed me off onto the nurse practitioner who is about as much use as a chocolate fireguard.  My chest is clear, as I knew it would be because I’m not coughing anything up.  My breathing test was over 500 – it was excellent even when I had pneumonia, because I have hEDS and my lungs are super stretchy.  When you have hEDS doctors absolutely shouldn’t rely on this test as a sign of how healthy your lungs are!  So in her own words the nurse practitioner told me “I don’t know what to do with you”.  Super.   She then started asking me about my MCAD, HIT and hEDS.  Er, why?!  She then wanted to refer me to a fucking dietician, like that would help my cough.  I did point out I’d been diagnosed with HIT for over 5 years now and was managing fine thank you very much, and in any event no dietician in Cumbria is going to have even heard of Histamine Intolerance and I would be teaching them about the disease!  She then wanted to refer me back to Dr Seneviratne……….for a cough!!  Jaysus.  So I explained to her that I’m fairly sure my cough is down to reflux and to give me a prescription for an H2 blocker, Famotidine.  I became allergic to it a couple of years ago but now I’ve had a break my mast cells might tolerate it for a week or three until my cough settles.  She gave me the prescription and just about shoved me out the door.   Thankfully my mast cells are so far accepting the drug, though to be honest my cough isn’t much better :-/

Also on Monday I’d had enough of waiting for the hospital to book my Dad in for his full body CT scan.  It’s been 7 weeks now since his lumbar puncture and he’s supposed to be under the care of the emergency neurology clinic!  So I rang the Neurologist’s secretary who said the referral had been made but no appointment yet was showing.  Apparently we just had to wait.  Funnily enough, though, only 4 hours later the scanning unit rang my Dad and offered him an appointment the next morning.  Obviously what’s happened is that the referral was made but not marked urgent, so he was placed on the regular waiting list.  It’s exhausting trying to keep on top of all this stuff, and surely to God it’s not my job to make sure someone else does their job properly :-/

Wednesday evening I was guest speaker at my Camera Club, doing a talk on Beginners Studio Photography.  It’s taken me about six months to put a 2 hour workshop together and, Sod’s Law, I felt absolutely dreadful on the day having barely slept all week due to my cough.  I started the presentation fine, but about 2 minutes in my mind went totally blank.  A big, black hole of nothingness where my thoughts should be.  I swear I couldn’t even remember my own name, let alone what the hell I was supposed to be talking about, and I stood there in front of 40 people gaping like a fish out of water.  Eeek!  An eternity passed and eventually I just started gabbling on about something (I don’t even remember what) until my brain decided to get itself back in gear.  I was mortified.

My dog Bertie has been pawing at his face since Xmas.  Initially I couldn’t see anything wrong, but now there is a definite lump there so I took him to the vets on Friday to have it checked.  My regular Vet was unavailable, so I saw a girl who still has acne and didn’t look old enough to have even qualified as a Vet.  Her diagnosis was “it could be anything from an ingrowing hair to a cancerous melanoma”.  Hmmm, Dr fucking Google told me that much!  Your job as a Vet is to say which type of lump it is, because one is a bit annoying and the other could kill him.  FFS.  She’s given him some Piriton to settle the itching and I have to go back in a week.  Why do I have to go back in a week?  He’s already had the lump for seven weeks now – is that not long enough to show it’s not going anywhere?  I have no faith in anyone these days.

I found out this week I’ve won a medal in an International Photography Salon based in the Netherlands 😀  There were 5,500 entries from across the world and only 12 medals were awarded so I’m proper chuffed.  However, they didn’t tell me which medal I’d won, ie bronze, silver or gold, or from whom, eg. the Photographic Society of America, the Federation of International Photographers etc., so I emailed to ask.  I received no reply.  I was telling a Camera Club colleague and his reply was “why does it matter which medal you got?  I have a drawer full!”  Well bully for you.  He’s been a photographer for nearly 40 years, whereas I’ve only been doing it for 5, and he’s healthy whereas I’m chronically ill.  Why are some people just so fucking mean spirited?  I’m genuinely thrilled when someone at my Club gets recognition for their skills, because I know what’s involved and all the hard work they’ve had to put in.

Y’know I wrote a post recently about wanting to go and live in a cave?  Well this is why.  All the little things which happen every day to chip away at my faith in humanity.  Doctors should know why you’ve been coughing for 2 months and if they don’t they should investigate.  Urgent appointments for progressively crippling diseases should be made urgently.  Vets should know the difference between an ingrowing hair and cancer.  And people shouldn’t be bitchy when you do well.  What the fuck is wrong with the world?

I was bored on Friday night, so decided to do some light painting photography.  It involves shutting myself in a pitch black room for hours with a torch, which I appreciate isn’t everyone’s idea of a good time but I find it fun 😉  Holding the shutter on the camera open for extended periods, you paint light with the torch onto an object, lighting tiny bits at a time.  You then stack the bits together in Photoshop, which gives a picture you couldn’t achieve in any other way.  I ended up with this photo which in the end took about 6 hours to make but I think is pretty.

Right, breakfast is calling.  As I lie in bed here typing the sun is coming up over the Pennine fells, the sky is a spectacular shade of pink and purple and the birds are chirping their hearts out.  I’ll enjoy my walk with Bert this morning 🙂

 

Weekly roundup

There has been no blog post this week because I’ve had my period and felt like road kill.  Not only has Aunt Flo mowed me down she’s backed up and run over me again, just in case there was a part of my body she didn’t mangle the first time.  Bitch.

I’ve spent a couple of days installing pull out wire baskets in one of my Mum’s kitchen cupboards.  Neither parent can bend down to reach into the back of the bottom cupboards anymore, so I thought a pull out basket would be the solution.  I didn’t think through installing 32 screws in a 30cm wide cupboard but.  My drill didn’t fit as it was too big and I could barely get my arm, let alone my head, in to see what I was doing.  The plus-side to having hEDS has always been my ability to contort myself into awkward positions but as I’ve aged I’ve stiffened up and these days a corpse with rigor mortis has more flexibility.  It was a fight and the cupboard won.

Wednesday evening was our 2nd print competition of the season at Camera Club.  They’re my favourite nights and I was thrilled to wipe the board, getting joint 3rd, joint 2nd and joint 1st with my photos 🙂  My 2nd place photo is of a child bride, and was inspired after reading about the legal age of marriage for girls around the world.  Here in the UK you aren’t trusted to drive a car til you’re 17, you aren’t considered capable of knowing enough to vote til you’re 18 but you can get married and produce another human being when you’re 16 – it makes no fucking sense whatsoever.  In some states of America the legal marriage age for girls is 12 – admittedly you need the permission of a judge, but 12?!  The Koran states that girls are ready for marriage when they reach puberty, which is my case was 11 while I was still at primary school.  In Iran, the legal marriage age for girls is 9.  Needless to say, in most countries the legal age of marriage for boys is much older than it is for girls, yet sex at a young age wouldn’t physically damage them and they aren’t at risk of dying from childbirth.  The way girls are treated makes me FURIOUS.

I received not one but two invitations in the post this week!  I never get invited anywhere by anyone so it’s a real treat.  The first invitation is to a wedding……..in October.  Is it usual to send out wedding invites nearly 9 months in advance?!  The other is to a friend’s surprise 80th birthday tea at a posh hotel and the invite tells me it will cost me £20 payable on the day.  WTF?!  Who has a party and expects the guests to pay for themselves?  I wouldn’t care, but the person hosting the party is loaded.  They retired in 2004 and sold property to the value of £210,000 which they now have sitting in the bank.  I, OTOH, don’t have two beans to rub together but when I had my 50th birthday party I paid for every single thing myself – I wouldn’t have dreamt of expecting my guests to pay for my party themselves.  What are people like?!!

The past couple of weeks it’s been bitterly cold here in the UK and the hay fever which has plagued me since Christmas had disappeared, but the past few days have been milder and it’s back with a vengeance.  As I type this I am sneezing and streaming and my eyeballs are already burning.  To add insult to injury I’m also coughing my head off.  It’s reflux, and stomach acid is getting into my lungs.  I’ve had it for 2 months now and it’s seriously getting me down.  Every breath I take makes me want to cough, my throat and stomach muscles are really sore and I’m utterly exhausted.  I’m allergic to PPIs, H2 blockers and cough suppressants, so my only recourse is Gaviscon and Rennies which I’m eating like they’re Smarties.  They are not working.  In any way.  So between my wayward hormones, hacking cough, streaming nose and burning eyes I’m feeling stupdendously shit and massively sorry for myself.   If I were a dog I would have been compassionately euthanized years ago.

On that cheerful note I shall leave you.  I shall drag on my thermals and take the hound out in air heavy with allergens and despite the fact that the slightest movement makes me cough my exhausted, muzzy head off.   Some days I’m glad to be alive………today is not one of them.

Weekly roundup

I’ve had a fairly quiet week for a change and it’s been nice to relax and have some time to myself.  I had a pleasant day on Monday going up the lakes with my friend for his birthday – he was widowed 2 years ago and is still grieving for his wife, so I was happy he’d asked me out rather than moping around on his own at home.

Wednesday evening I’d agreed to do two talks at my Camera Club on various types of software.  Whenever I commit to doing something I worry myself stupid in case I’m ill on the day and have to pull out, but I was fine and it went really well, including good-hearted banter from the audience,   I was finally presented with my certificate for achieving the DPAGB back in November by an official from the Photographic Alliance of Great Britain, who also asked if I’d be guest speaker at his Camera Club in Carlisle next season which was flattering 🙂

I felt physically great at the start of the week, but rubbish by the end of it.  My brain fog today is ridiculous, every part of my body is aching and I have the energy of a zombie.  I’m currently on day 32 of my cycle so am wondering if I’m going to skip a period this time as it’s so late.  All this uncertainty, and not knowing when or if Aunt Flo is going to put in an appearance, is doing my nut in.

I spoke to the GP about my Dad.  His last B12 test twelve months ago was fine, so low B12 is clearly not the cause of his neuropathy.  She’s put him on amitriptylene for his aching leg pain and, being as though he’s also understandably a bit low, I’m hoping it will help.  She also said he most definitely should be tested for Lyme disease, so has arranged for him to have a blood test this week.  To be fair to her, she takes everything I say on board and if I request a test or referral she’s usually more than happy to agree.

I’ve had time to work on another photograph this week.  I live right next to a little village Church, which luckily is still open to the public all day.  Hardly anyone goes in the winter, so I’m able to take my camera in there and have done several photos inside.  As a teenager I seriously considered becoming a Nun but I would have been disastruous at it, on account of the fact I hate being told what to do 😉  I hope no-one is offended by my picture which I’m calling Disobedient – it was simply inspired by my story.

 

Weekly roundup

We finally heard from the hospital about my Dad’s lumbar puncture this week and it was devastating news – they still don’t know what’s causing his severe, progressive, axonal sensorimotor polyneuropathy.  They thought it was most probably down to CIDP, but there was only a very slight increase in protein in his spinal fluid so they’ve now ruled that out.  My Dad is angry, frustrated and terrified.

His blood work this time did show decreased B12 at 140 (normal is 200-900) so he’s been referred for B12 injections, however I’m not sure when this has happened so can’t say whether it’s connected to the neuropathy or not.  He’s had enough blood taken to sink a whole fleet of ships in the past two years, so if he’s never had his B12 checked before I’ll fucking sue the NHS, and if he has had it checked it must have been normal so can’t be the cause of his 18 month long neuropathy.

The consultant now wants him to have a full body CT scan.  I assume she’s looking for cancer, but she can’t be that concerned because it’s been a month now since his lumbar puncture and we don’t even have a date for the scan yet (you’re supposed to be seen within 2 weeks if cancer is suspected).

We just don’t know where to go from here and all the while my Dad gets worse and worse…….and worse 😦  I’m hoping to speak to his GP on Tuesday to arrange his injections and I’m going to ask if he’s ever been tested for Lyme disease.  He’s been an avid walker his whole life and we live in an area which is endemic for tick borne Lyme disease which, if left untreated, can cause neuropathy so I’m going to ask the question – we’ve nothing to lose.

I put in a formal complaint to the Managing Director of RMB Automotive about the terrible experience I had at RMB Darlington where I bought my new car, and have not even had a reply let alone an apology.  The fuckers tried to rob me and not even the MD of the group cares :-/

I have been having a serious bash at losing some weight since Christmas.  I usually like to be around 8st 5lbs (119lbs) but in December was 9st 1lb (127lbs) and realized all the peri-menopause induced guzzling of sweeties had to stop.  I’m currently having 2 slices of toast with jam at 8am, a main meal at lunchtime, then just having a fruit & yoghurt smoothie and some cashew nuts for supper with the odd handful of grapes if I get really hungry inbetween meals.  I’m delighted to announce that so far I have lost 3lbs, go me! 😀

Speaking of smoothies, I decided to re-introduce organic, plain yoghurt into my diet.  Some of the info I’ve read online states that live cultures, as is used in yoghurt, contain histadine however I’ve no idea on what tests or research this is based.   From the limited testing which has been done (as shown on my Histamine & Foods: The Evidence page), yoghurt has been shown to be low in histamine so I thought I’d try it and see how it went.  When you haven’t eaten a certain food in five years because you’ve been incorrectly brainwashed into believing it’s bad for you it’s hard to re-train yourself to think of it as fine, and I admit the first night I tried it I was anxious.  I shouldn’t have been, though, because I’m not allergic to any food so it’s not like I’m going to have an immediate anaphylactic reaction.  Histamine Intolerance is more of a bucket effect so even if yoghurt were high in histamine, unless my histamine bucket was already high (which it currently isn’t) it should have been fine.  As it is, I’ve been eating 3 tablespoons of yoghurt most nights for three weeks now and I’ve had no HIT symptoms at all.  I’d forgotten how lovely a banana, passion fruit and yoghurt smoothie was and I’ve been really enjoying them 🙂

I’ve barely picked my camera up since last November, so this morning I decided to try an idea I’d had in my mind for a while.  The resulting picture, ‘Reading by Candlelight‘ is OK I think, though nothing to write home about.

Tomorrow is a friend’s birthday, and he’s invited me out for lunch to a lovely hotel up the Lakes.  That’s my diet scuppered then, and I’ll probably gain back the 3lbs I’ve lost in one sitting, but life is too short not to eat pudding, especially when someone else is paying for it 😉

 

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!

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!