Category Archives: Myalgic Encephalomyelitis

Weekly roundup

I did something exciting this week.  My great-gran, my gran, my Mum and I all have an Essential Tremor and last year Mum and I applied to take part in the world’s largest study on the disease.  We initially had to fill out a detailed questionnaire and to be honest I thought they’d exclude my Mum because of her drinking and the amount of tablets she takes and me for the fact I have several other diseases, but after waiting for several months we found out we had been accepted into the trial.  So we were sent a prescription for a blood draw, along with phials and a pre-paid Fed-Ex envelope and on Tuesday we had our blood taken at our local NHS health centre (great they agreed to do it for nothing!) which we shipped off to France to be gene tested.  The actual trial is being done in Canada but I think anyone applying from Europe will send their blood to France who will forward the results to Montreal.  My Nan’s and Mum’s tremor was so bad by the time they were 70 they couldn’t write their own name so researchers have 20 years to find effective treatment so that I don’t suffer the same fate.

I’ve made a new friend at my Camera Club.  She’s absolutely lovely and very kind hearted, so we had lunch together this week and talked endlessly about all things photographic.  I know I bore non-photographers senseless with my hobby, so it’s nice to have someone to talk to who shares my passion.  It’s incredibly difficult to make new mates when you’re largely housebound and meeting new people was one of the reasons I joined my Camera Club, so after going for 4 years it’s fab that I’ve finally clicked with someone although as people we’re very different.

Thursday I went with my Dad to see the spinal consultant about his leg stiffness and weakness.  Despite finding several bulging discs and some spinal stenosis on his MRI scan the Doctor wasn’t concerned and said he’s definitely not a surgical candidate.  So he referred him for physio and that was that.  My Dad already had a physio appt for the next day and the physio was also unconcerned.  He just told him to walk as much as possible and dismissed him from the Clinic.  I’m not sure how walking, which my Dad already did loads of, is going to help spinal stenosis so I felt disappointed that he’s basically going to receive no help.

My Cleaner (who also walks my dog two days a week) has gone down with a lergie, so hasn’t been this week.  My house was minging so I had to clean it myself as best I could on top of taking the dog out in the snow.  It’s typical it coincided with my period week so I was feeling pretty rough, not least due to a three day migraine and a fainting spell brought on by stupidly low blood pressure.  It’s no fun having to go out in a freezing winter blizzard literally 30 minutes after you’ve passed out and thrown up and feel so weak you can hardly put one foot past the other.  Bertie didn’t care though – he loves the snow 😉

Speaking of The Curse I had only my second ever totally-pain free period in 38 years, hurrahhh!  I’d been feeling achy and grotty for a few days beforehand but when I actually started there was zero pain, when usually I’m in bed with two hot water bottles feeling physically sick it’s so bad.   To think that most women have periods which are that easy is mindblowing and if you are one of those women you have no idea how lucky you are.  I have been crippled every four weeks since the age of 11 due to endometriosis and adenomyosis and my periods have felt like a form of torture, which is why I’m so desperate for them to end.

Thursday I’d arranged with a women in the next village to photograph her daughter.  I was doing the shoot for free in return for using the photographs in competitions and was also giving her 2 free mounted prints, which is a good deal by anyone’s standards.  We’d arranged it in December but she didn’t turn up, telling me she simply forgot even though we’d only spoken about it 14 hours earlier, and it’s taken her this long to ring me to re-arrange.  So I spent an hour setting up the studio and gear at 5pm, my worst time of day when I’m usually in bed, then I waited for them to arrive.  And waited.  And waited.   You guessed it, she didn’t turn up again and I haven’t heard a word from her since.  She knows I’m ill and I’ve no idea how she has the gall to be so to be so rude and dismissive of my time and energy.  She’s shot herself in the foot though because she also clips my dog every 6 weeks and if she thinks I’m paying her to do that ever again she has another think coming.

Unrest is being shown tonight at my local cinema.  I downloaded it on iTunes the day it became available so have already seen it but my best friend, who’s had ME for 18 years, hasn’t so I asked if she wanted to go and she said no.  She has no interest in the film whatsoever which just goes to show how differently we all cope with chronic illness.  There is no right or wrong way.  Everyone’s experience is different.  Everyone’s needs are different and we should be allowed to react to our situation in our own unique and individual way.  Whatever gets you through the day.

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Weekly roundup

This week seems to have passed in a bit of a tired blur.  Bloody hormones, I do wish they’d bog off and leave me alone.   I type this with stomach ache, back ache, nausea, weariness, a weird head and a general yukkiness all because my period is imminent.  Knowing that the end is in sight, yet not quite being there, is so frustrating.  Pleeeease Menopause hurry it along so I don’t have to go through this crap every month.

My Uncle died on Friday, though it was expected and he was already in hospital.  It’s sad, but he’s suffered with awful ill health the past couple of years none of which was curable so even his children admit it’s a blessing. He’d had a long, healthy and happy life – you can’t ask for more than that.  It’s the Dad of my cousin with breast cancer, and to be honest I’m secretly pleased he’s passed away now so that she can bury him before her surgery at the start of February and then concentrate on getting herself well.

Despite feeling relentlessly rubbish I crossed something off my Bucket List this week.  I saw a Starling Murmuration up close and personal high on the Pennine fells.  OMG it was breathtaking.  It started with about 20 birds in a circle in the sky and within 5 minutes a thousand birds had appeared out of nowhere.  They danced and swooped almost silently, creating mesmerizing patterns in magical unison, and at one stage they were right above me so low I could have almost reached out and touched them – good job none of them needed the loo or I would have been pebbled dashed!

We were back at Camera Club on Wednesday night after our Christmas break and it was the judging of our annual Millennium Trophy competition, in which I came a respectable second.  The theme this year was ‘a panel of three’ so I tried something a bit experimental by simulating under water pictures.  The reason the judge gave for me not actually winning was that he didn’t like the fact the middle and right photos were dark at the bottom.  I was trying to convey the depth of the water but he thought it was unnecessary  – what does he know anyway 😉


As I’m aging, and as people around me die, I’m increasingly aware of how precious life is and how short.  Having been so ill all these years there is a probability that I will not live as long as if I’d been healthy and I have an urge to make every day count, so I’ve been looking for goals to set myself for 2018.  But they have to be things which don’t put me under pressure, things I enjoy and things I can physically achieve.  My first is to try for my next photographic distinction in November, which I think I’ve mentioned previously, and my second is to write more of my book which was shelved last year in favour of my photography and due to the health issues of my parents.  It’s tortuous going as I can only write one paragraph at a time, and then only on the days when my brain is clear enough, but I’ll keep plugging away because I’m determined to finish it and tell my story.

I received an email on Wednesday morning from the Lottery people.  “We have exciting news about your ticket.  Log in to your account as soon as possible.”  OMG I’m rich.  RICH!  So I log in with heart hammering and hands shaking……………to discover I’d won £4.30.  Guess I won’t be buying my own tropical island or hiring my own Chef any time soon then!

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.

 

You’re in the army now

My immune system is currently like a crack SAS unit.  Not content with being a private in the army and taking a week to fight off the enemy with a bayonet it wants all intruders dead immediately, if not sooner, even if it puts itself at risk in the process.

I went to bed on Saturday night perfectly normal.  Not a hint that there was anything amiss.  Woke up Sunday morning and before I’d even opened my eyes I was sneezing.  I often sneeze first thing in a morning so didn’t think much about it, but 2 hours later when I’d gone through four man-size hankies and produced enough mucus to fill a bucket I did wonder if something was up.  By 2pm that afternoon my nose was like a tap and my eyes were “full of cold” (is that just a northern saying?!).  Come tea-time it was official – I had the lergie and felt absolutely rubbish.  I could barely keep my eyes open, was chilly and headachy, and so tired I was spark out by 9pm.

I slept through the night and woke Monday morning completely back to normal.  Not a sniffle, not a drop of snot, nor any sign of a virus.  Brilliant, but obviously flippin nuts.  I mean, who develops a streaming cold and gets rid of it in less than 24 hours?!

It hasn’t always been this way though.  When I was first developing M.E. I had the classic one-virus-after-another situation for months until I finally contracted gastroenteritis which was the beginning of the end.  I also remember about 5 years ago having no less than seven cold viruses in one winter, and even had three different cold strains at the same time!  But this year while everyone around me has dropped like flies with everything from the winter vomiting bug to Aussie Flu I’ve remained virus free.   Quite what leads my immune system to be either stupendously lazy or ridiculously over-zealous is a mystery.  I just wish it would settle for the rank of Officer, commanding the troops with knowledgeable efficiency from behind the front line, rather than being either cannon fodder in the trenches or a heroic lone sniper both of which are likely to get it killed.

It’s the Holy Grail isn’t it?  Finding a way of returning our immune system back to normal so that it’s neither over, nor under, reactive.  So that it treats the world with healthy suspicion rather than a complete loony toons attacking everything in sight, or a total coward hiding under the duvet.  I pray the cure arrives soon because my poor immune system is exhausted from its game of Jekyll & Hyde and I’m plain fed up of dealing with its schizophrenic behaviour!

 

Weekly roundup

2018 has not got off to the start I’d hoped.  I wish I had a nice, happy, positive roundup post for you but sadly I’ve had a shitty week.  On New Year’s Day I had an anaphylactic reaction to the Famotidine (H2 antihistamine) I’ve been taking for my severe GERD (stomach acid).  It had been coming on for a couple of months, with anxiety, palpitations and muscle spasms after taking the tablet, but I’d been trying to ignore it in the hopes my mast cells would settle themselves down.  They refused and finally gave up on the drug last weekend.  Bugger.

My reflux is really bad and the pain of having my body’s equivalent of bleach eating away at my stomach and oesophagus day in and day out honestly makes me suicidal.  My nausea is also off the Richter Scale and my appetite has totally vanished.  Not to mention the appalling taste of battery acid which I now have in my mouth every second of the day and which burns my skin and tongue.

I also think the H2s have been helping with other things, such as muscle spasms and brain fog – I certainly feel much more spasmy since I stopped taking them and very foggy headed.  After all these years I am so sick and tired and being sick and tired I can’t even tell you, and spent the first few days of 2018 wishing I could have a massive heart attack in my sleep and not wake up, but that hasn’t happened so I’ll just have to find a way of coping with the symptoms.

I’ve now tried all the H2 drugs available and, while my body tolerates them for a year or so, eventually my mast cells throw a hissy fit and I become allergic.  I have no fucking clue what the problem is but it’s the same with any drug I take, no matter what it is.  So, yes, I could now progress to trying PPIs but every single day I would be worried about anaphylaxis – I either live with the pain and nausea or I live with horrendous anxiety.  Super.

To add insult to injury whatever I did to my neck in my sleep before Christmas is no better.  I’d hoped I’d just pulled something and it would settle but 3 weeks on it’s still hugely painful every single time I move my head or arms. I can’t be arsed seeing the Doctor (assuming I could get an appointment this side of Easter) as they would want to prescribe painkillers I can’t take or physio I can’t tolerate, so I’m just doing the usual icing, heating and spraying on Ibuleve gel (I can’t even reach to give it a good rub as it’s too painful to move my arms).

I am not a happy bunny and the week has not held any saving graces.

As if things weren’t bad enough, my Dad had some routine bloods done before Christmas in connection with his leg pain and weakness and the results showed that he has a low lymphocyte count (a type of white blood cell) and they also found kappa paraprotein.  There can be various reasons for this but tomorrow he has to take a urine sample in which will be tested for Bence Jones protein which detects blood cancer, so naturally we will be worried until we know the results.   At his age it is much more likely he has Monoclonal Gammopathy of Undetermined Significance (MGUS) and will just need to be monitored as statistically 1% of people with MGUS develop cancer each year, but it’s still something we didn’t expect and has come as a bit of a shock.  Luckily for my Dad he is totally clueless as to what’s going on and Mum and I haven’t discussed the possibility of cancer with him – it’s pointless worrying him (and due to his dementia he gets super anxious about the slightest thing) until we know more.

The only nice day I had this week was Thursday, when I made the journey through to the city to see my best mate.  She has been having issues with her hands which swell up and give her fingers like sausages.  Her skin is also dry, kind’ve lumpy and eczema like and no-one is quite sure what’s going on.  She had a scan which showed virtually all her finger joints were swollen, but her arthritis blood markers are all normal which is odd.  Anyways, on Thursday she had been booked in for allergy testing but they rang the day before to cancel it (for the second time) due to the crisis which is going on in the NHS, which left her day open so that we could have a catch-up.

Not wanting to sit in the house all day today on my own and dwell I’ve arranged for my folks to have Bertie for the morning and I am taking my hide down by the river to try and photograph a pair of Dippers I’ve spotted recently.  It’s bollock freezing cold, so I will need to be well wrapped up and have various heat pads secreted about my person, and it’s not going to be easy when I can barely move my head or left arm but it will pass the time.

Speaking of which I must get up, dressed, take the dog out, through to my parents and then get myself settled down by the river.  Or at least I would if I could stop sneezing.  I have been having a massive sneezing fit for the past 30 minutes, my nose is running like a tap and I’ve already gone through 2 man-size cotton hankies since I got up.  I swear if I’m starting with a cold it will be the last straw.

The Need To Create

When I was seeing the Counsellor last Christmas about the situation with my Mum, she said to me “OK, so what creative pursuit do you follow?  I know you do something because you couldn’t have survived your life otherwise and stayed sane.”  Her insight took me aback.  I hadn’t realized how much I rely on my creativity.  It’s a huge distraction, gives me a goal, purpose, challenges and connects me to the world from my bed.

As a child, reading books literally saved my life.  I could lose myself in a story, taking a break from the chaos of my life.  But I’ve also always been artistic, spending hours as a young child drawing and colouring.  My Mum taught me both to knit and crochet when I was really little and I knitted all my doll’s clothes as a kid.  When I went to primary school we had compulsive home economic lessons (while the boy’s did woodwork!) and it was there I was taught to sew, tiny delicate embroidery stitches which took hours to perfect.  I love having the ability to create something out of nothing.

After I left school I was way too busy for hobbies and, reading aside, my creative pursuits were put on the back burner though I used my creativity in other ways, renovating my Victorian house and tarting up old furniture as I couldn’t afford to buy new.  When I became ill, however, all that changed.  I had to find a way of passing the endless tortured hours, so went back to embroidery this time buying kits and making tapestry cushions which took months (sometimes years) to finish as I could only do little bits at a time, and which I gave as gifts for Christmas and birthdays.

A decade on and my joints were becoming ever more painful, so I gave up the embroidery and took up crocheting which I find easier.  I discovered the charity knit-a-square and now regularly make beanie hats and fingerless gloves to help AIDS orphans in Africa.  They also take simple knitted or crocheted squares which they make into blankets – there are a few patterns on their website but if you’re going to send something please only make items they need.  That I can still be useful, help others less fortunate than myself and contribute to the world is incredibly important to me.

Before my MCAS & HIT diagnoses when I was having anaphylactic symptoms every time I ate and living life in a permanent state of palpitations, muscle spasms, nausea and anxiety, I crocheted for hours on end.  I find it very soothing, even if the repetitiveness killed my hands and wrists!  It’s really easy to learn too, with only 1 basic stitch which is modified, so if you fancy giving it a go I’m sure there’s a YouTube video somewhere which would teach you.

Of course, I then discovered photography which I simply love although it is something I can only do on the days I feel well enough to be up and about.  I admit to feeling a bit guilty about my photography, though, because it benefits no-one but me unlike my sewing and crocheting which are given to other people, but we all need something which is just ours and photography has taken the place books used to fill (my brain has been too poorly to read for over twenty years now).  And having taken the photographs I can edit them in bed using Photoshop, brain fog permitting.

When we’re chronically ill we all find individual ways of coping and remaining creative has been a big part of that for me.  It’s also a great distraction and if I make something usable at the end of it then so much the better.  I’ve found that many of my ill friends are creative in some way or another: they make beautiful jewellery, cards which are sold for charity, are crafters or fellow photographers.  That we can make art despite the most dire of circumstances is a testament to our spirits and our innate need to connect with the world, and each other.

New Year Roundup

I know some of you are wondering how the situation is going with my parents, so I thought I’d do an update.  My Mum kind’ve thought that I’d have a blow out, take a week to get over it and everything would go back to normal but I simply can’t do that and would have some kind of breakdown if I tried.  So things have definitely changed and I have taken a huge step back from my parents.

I told them both that I love them and that I will take care of them, but I am not visiting socially four times a week like I used to – not for a while anyway.  I told them that my Mum’s drinking,  listening to their constant bickering, my Mum’s bitching and bullying, and never knowing what kind of mood they’d both be in was making me physically and mentally ill and I was no longer prepared to deal with it.

I used to ring them every morning at 9am to check how they were and what they were doing that day, but I’ve stopped the phone call.  If they need me they know where I am.  My Mum still rings me most days for a chat, which is lovely, and initially I felt really guilty that I wasn’t checking up on them however I know that my step-brother rings most days anyway so I knew they weren’t being left in isolation.  He needs to take more responsibility for them in any event and take some of the weight off my shoulders.

My Mum isn’t drinking anywhere near as much as she was, though she is still drinking.  On Christmas Day I went there for lunch and she had a large glass of Baileys with her meal.  Only the one, but even so.  That she couldn’t not drink despite the fact she nearly lost her only daughter over her alcoholism saddens, but doesn’t surprise, me.  The fact that my Dad had obviously wheeled her down the alcohol aisle at the supermarket to buy the Baileys also makes me sad – I have no idea where his backbone is in standing up to her (my Dad rarely drinks btw and had lemonade the same as me at Christmas lunch).  I’m very conscious that there is now a large opened bottle of booze in the kitchen which is going to have to be drunk and where that will lead.  I’m just letting them get on with it.  They are grown-ups and it’s not up to me to tell them how to live.  They are both aware of the consequences of their actions and have chosen drink over their relationship with me, a fact which I try not to be mortally wounded by.

I am still taking care of them, however – my conscience wouldn’t let me not because whatever their faults they are old, ill, vulnerable and my parents.  I went with my Dad to his back appointment the week before Christmas and rang about his blood results.  I also offered to take my Mum to her lung appointment on 29th December.  Over Christmas I set their new broadband connection up, renewed Mum’s stairlift insurance and took their electricity meter readings.  They physically couldn’t manage without me – I know it and they know it, and I think we both feel stuck in the situation.

I have loved not having to deal with them so much.  I’ve felt relaxed for the first time in years and finally feel rested – I’d forgotten what that feels like.   I still fight the guilt that I am not spending more time with them but then habits that have existed for years are hard to break.  It’s been wonderful, though, to just be able to do whatever I like for a change and not have to think about them or work around their schedules.

So there we are.  I have no idea what the future will hold because we’ve had some worrying blood results in respect of my Dad and if it turns out that he’s seriously ill everything will change so I’m just taking it a day at a time.

So my Christmas week was quiet and uneventful, just the way I like it.  I’ve spent some time preparing a photography talk which I’m giving at Camera Club next season and trying out my new flash light in my spare bedroom but other than that I’ve just chilled.  Saturday was sadly a right-off as I had one of the worst migraines I’ve had in ages, complete with awful dizziness and vomiting, and the headache and hangover from that is lingering today so I’m expecting a second day in bed being bored and a bit fed up but such is life.  Tomorrow is another day.  Nay, another year!  I have told my Camera Club that I am going to try for my next photographic distinction, the DPAGB, in November so that’s my goal for 2018.  I’m also facing a new battle with my insurance company and am opening a new case with the Financial Ombudsman next week.  So the year already holds goals, challenges and endless possibilities and I am looking forward to every one 🙂  Happy New Year!