Tag Archives: CFS

Another M.E. Death

The M.E. community were shocked and saddened to hear of the death of M.E. warrior Jennifer Chittick yesterday (24th May 2019).  Jenni had endured severe M.E. for a decade, was bedridden and reliant on her parents for care.  We don’t know the cause of death, but to lose your life aged just 31 is absolutely tragic and my heart goes out to her family and friends.

Just a day before she died Jenni had been the subject of an excellent article in the Daily Mail newspaper on the abuse and neglect faced by M.E. patients.   Her story echoed mine and her tragedy could so very easily have been mine.

I became severely affected by M.E. aged 26.  I lived alone and was told by my GP “we don’t have enough home care workers for people with cancer so you stand no chance” and I was just left to look after myself, despite the fact I once spent 4 months barely able to open my eyelids.  For 6 years I crawled to the loo on my hands and knees and never cleaned my teeth.  My Mum made a meal for me every day, after working full time, and my Dad drove across town with it in the car on a tray for me – it’s the only nutrition I had other than cereal and the odd smoothie.

At one stage I was so ill I simply couldn’t manage any longer at home alone.  My GP arranged for me to be admitted for respite care to the neurological rehab wing of my local hospital.  There were no doctors there and I was mostly looked after by physios – this was a ‘rehab’ ward after all!  I didn’t know then that I had Ehlers-Danlos syndrome, and I was told it was brilliant I was so flexible!  I had huge problems eating solid foods, not least due to oesophageal spasms (now known to be due to mast cell disease) and gastroparesis (now known to be due to hEDS), so the psychiatrist was sent for and she told me I had anorexia, despite the fact I was starving, wanted to eat but was just too ill to.  I had a seizure in the presence of a nurse one day and she didn’t touch me or send for a doctor …………I’m sure if I looked at my notes it would have some psychological explanation, even though I couldn’t move my entire right side for a whole day afterwards.  I was given no help with bathing, despite the fact it was one of the things I struggled the most with.   In the end, after 3 weeks of zero help and disbelief, and being looked after by a girl who used to bully me at school, I discharged myself and went back to living at home alone.  It was pure luck I survived the next decade, both physically and mentally.

My experience happened back in the late 1990s/early 2000s.  It makes me furious that the situation hasn’t improved in the intervening two decades.  Just because a cause hasn’t yet been found for the disease shouldn’t mean we are treated as subhuman or denied basic care and compassion.  The denial of M.E. as a physical disease, and the neglect and abuse of patients, will eventually be uncovered as one of the biggest scandals of modern times.



Back in 2016 I became aware of a gene study in which researchers at the Institute for Neuro Immune Medicine were hoping to put together a genetic database of over 10,000 patients with ME/CFS so that genetic information would be available for researchers looking into the cause of the disease.  Luckily I’d had my genetic data mapped by 23andme years ago so I was able to participate in the study which simply involved filling out a questionnaire and sending off my RAW data via email.

I heard nothing for 2 years and then this week received a message to say that I had a MTHFR mutation and researchers were interested in studying this.  Up to 50% of the population may have a MTHFR mutation and it doesn’t mean you are going to develop a disease.  In fact it usually has no impact on health at all, though it may predispose people to certain illnesses if other environmental factors are present or mutations in related genes are found.

Amongst other things, the MTHFR gene is responsible for the conversion of folate (also called folic acid or vitamin B9) from the food we eat into activated folate.  When the MTHFR gene is mutated this conversion doesn’t work as well and can result in a folate deficiency.  Activated folate belongs to a group of ‘energy’ vitamins and a deficiency may produce fatigue and cognitive changes.

The new study would involve taking a L-Methylfolate supplement (the active form of folate) for 3 months to see if it had any impact on symptoms.  Unfortunately, however, as the research involves a blood draw it’s only available to people living in the United States so sadly that rules me out which is a shame as the fact it doesn’t involve taking drugs means it’s probably the one study I could have taken part in!

My only concern with much of the current research into ME/CFS is that it focuses on fatigue, and while fatigue is obviously a large part of the disease ME is not chronic fatigue.  It’s characteristic symptom is post exertional MALAISE.  I feel ill when I’ve done too much (in fact, I feel ill most days of my life) and it’s this researchers need to study.  If I’m on the computer for too long I start to get a sore throat and if I walk too far I start to feel fluey – I’m not simply ‘tired’.  As there is no diagnostic test for ME many people with chronic fatigue of unknown cause have been diagnosed with it and it’s sadly become a bit of a dumping ground which can only muddy the waters for researchers.  If you take a L-Methylfolate supplement and suddenly feel loads better you didn’t have ME in the first place, you had a folate issue.

While the MTHFR gene has other functions and may be implicated in cardiovascular disease, I personally don’t think MTHFR mutations are going to be the answer to ME, at least not unless they have some kind of massive impact on people’s immune systems we as yet know nothing about.  That’s my take on the situation anyhow but then I am a cynical old timer 😉  In fact, I wrote a post about MTHFR back in 2015 which states my views on the whole MTHFR issue – be warned, I’m not exactly on board the MTHFR band wagon.

ME aside, if having a MTHFR mutation can make you tired that’s obviously not a good thing when you already feel like the walking dead.  Luckily folate rich foods naturally contain the active form of folate and studies have shown that a folate-rich diet can match the homocysteine-lowering effects of a L-Methylfolate supplement.  My diet is already quite rich in high folate foods, such as beans, lentils, broccoli and mangoes though if you have a MTHFR mutation and are unable to eat folate rich foods it might be worth taking a L-Methylfolate supplement but be warned they can have side effects which you can read about here.  Personally I’m not giving the whole MTHFR mutation a second’s thought, that’s just my personal choice.

If any of you would like an informative, easy to read guide on MTHFR there is a decent one here.


Mast Cells in M.E.

This month a two day summit was held in America for clinicians working in the field of CFS/M.E. and long-time advocates and ME Doctors David Kaufman, Charles Lapp and Susan Levine all discussed the fact that they are now suspecting mast cell activation as either a cause, effect or perpetrator of the disease – their views are outlined in this piece from Medscape.  Having thought this for five years now I hate to say “I told you so” but……..well…………I told you so 😉

All joking aside, I am as convinced as I can be that mast cells play a role in M.E.  Having followed research on the illness now for a quarter of a century it’s the only theory I have come across that even remotely fits every aspect of the disease as outlined in my Canary post.  And in my world, if it looks like a duck and quacks like a duck, chances are it’s probably a duck.  I may be proved completely wrong, but at the moment with the knowledge we have my feet are firmly in the mast cell camp.

The link to the Medscape article was posted on the ME Association’s Facebook page and seemed to ring a bell with quite a few patients.  They all then, naturally, wanted to get tested for mast cell disease in the hopes they would be cured.  I wish it were that simple.

Although I believe mast cells are implicated in M.E. that does not mean I think M.E. is just another name for Mast Cell Activation Disorder.  MCAD is a distinct disease entity.  You can have MCAD on its own, you can have MCAD alongside other diseases like Ehlers-Danlos Syndrome or M.E., of if you’re unlucky you can have both or in my case all three.  Treating the symptoms of MCAD (there is no cure) will do nothing to help your M.E., at least not in my experience.

If mast cells are implicated in M.E. why doesn’t treating the underlying mast cell disease help?  Good question.  I’m not a Doctor or a Research Scientist and even if I were I probably still wouldn’t know the answer.  MCAD was only discovered as a disease a decade ago and we currently know very little about it.  Treatments are available but they’re crude and even leading Doctors in the MCAD field admit they are limited in the ways they can help.

The focus is often on Histamine in respect of MCAD, but it’s only one of 30 chemical mediators expressed by mast cells so is only a tiny part of the MCAD puzzle.  We currently only have the capability to test for half a dozen of the 30 mediators (and in the UK only have the means to test for a couple), so we have a very long way to go in being able to accurately test for mast cell activation.  Even if excess histamine is found to be present it binds to four receptors in the body (at least, we only currently know about four) and we only have drugs to target two of those receptors (H1 and H2), so if H3 or H4 receptors are implicated in M.E. we can’t currently do anything about that.

Being treated for MCAD probably saved my life, but it had little effect on my M.E. with two notable exceptions.  The horrendous insomnia which has plagued me for the 24 years I’ve been ill was helped dramatically when I no longer had stimulating histamine in my brain, and the back pain from which I’d suffered for 30 odd years improved by about 60%.  But I still have M.E. in all its fluey, achey, brain fogged, POTSy, sore throated, weak muscled, post exertional malaise glory.  It’s a bugger.

It’s hugely difficult to get an official MCAD diagnosis here in Britain and most people end up having to go down the very expensive private route as MCAD still isn’t officially recognized here in the UK so isn’t funded on the NHS.  There are a couple of NHS Consultants who might see you but in practice only if you have severe disease and have classic MCAD symptoms like flushing, hives and a history of anaphylaxis which has been confirmed isn’t due to allergies.  Having received your diagnosis, treatments are limited and in my case the very fact I have MCAD and my mast cells reject drugs on a grand scale means I have anaphylaxis to the tablets needed to treat my anaphylaxis, which would be hilarious if it weren’t so scary.

To anyone reading this who wants to rush out to see an MCAD specialist trust me when I say you’re heading down a difficult and potentially expensive road with no real destination, so think carefully about whether or not you want to spend your energy doing that before you start.  I’m not saying don’t, just that it’s probably not going to help your M.E. so unless you have clear symptoms of MCAD and are debilitated by those it will all be a bit pointless.

Having said all that I’m still hugely excited by the fact that Doctors are picking up on the fact that M.E. and MCAD might be related.  It’s no coincidence that Doctors seeing Hypermobile Ehlers-Danlos patients were finding that a large sub-section of those also had MCAD, and it’s no coincidence that many of those also had a diagnosis of M.E.  The hEDS/POTS/ME triangle is well known about in the patient population and the underlying common denominator appears to be mast cell activation.


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.


Boom & Bust

Following on from my post about pacing, I want to talk about boom and bust.  I have a lovely friend with severe M.E. and on her Facebook page recently she wrote (and I’m paraphrasing): “The differences in what I can do physically and mentally day to day are shockingly drastic. The other day, I folded clothes while talking on the phone, ordered food online, hoovered one room (for the first time– I was having a good day), did some light cooking, wiped down some surfaces in the kitchen, carried a tall lamp from my upstairs bedroom into the living room and watched tv with my husband — all without getting neuro symptoms or taking a nap.  Today I’m back in bed before even having breakfast and I had to rest in total silence and darkness for hours before even being able to write this because my brain is struggling in molasses”.

I love her to bits but I did want to grab her and shout arrrrggggghhhhh really loudly in her ear’ole 😉  This is a classic case of booming and busting.  In other words, doing all sorts of activities on a “good day” then wondering why you’re poleaxed for the week that follows.

If you had triple heart bypass surgery you wouldn’t expect to get out of bed the next day and hoover your lounge room carpet.  You would take things easy, gradually doing little bits and gauging your symptoms.  If your pain got worse you’d realize you’d over-done it and cut back, taking months to gradually build up your strength and tolerance to activity.  Yet people with M.E. think that the second they wake feeling even marginally human they should be able to go about their business like they’re not sick at all, then wonder why they feel like they’ve been hit by a train as a result. It’s a bit nuts when you think about it logically.

I speak as one who, for the first 6 years of her illness, thought that one day I’d just wake up better and be able to resume my life like nothing had happened.  I was in complete denial that I would never be well again and that my old, healthy and active life had gone forever.  I was no longer the person that I had always been and when you finally realize that you seriously want to slit your wrists.  However, your old life is dead and just as with any kind of grief you have to work through pain, anger and despair before coming to terms with your situation and finding acceptance.  It’s hard to do this alone and that’s where a trained professional may be useful.

After you’ve worked through your grief and denial and finally accepted that you have a new life you have to figure out the rules of that new life.  This is where pacing comes in.  I’m no expert and can only talk about my own experience, but I did get myself from being almost totally bedridden for 10 years to being able to live independently and I think routine was the key.  I had the same schedule every single day.  I don’t care if I woke feeling like Usain Bolt I stayed in bed and rested, doing no more on a good day than I did on a bad day.  Sounds easy doesn’t it?  But you have no clue, like seriously no fucking clue, how hard it was.  When I hadn’t been out of bed for three months and suddenly woke feeling if not exactly well at least like I wasn’t dying and not being able to use that precious day to do something other than staring at the same four walls of my bedroom – the same walls I’d stared at for the entire previous year.  Or to chat to my best friend for a whole hour on the phone after not speaking to a soul all week. Or to walk to the shops and be surrounded by people after months of total isolation.  Or to go out to dinner when I’d lived on cereal and frozen meals for one for the past six months.  The temptations faced by Jesus in the desert are nothing in comparison to the temptations faced by M.E. patients who are having a ‘good day’.  However I thought of my schedule as rehab and, just like the bypass patient recovering from major surgery, I needed to allow my body to heal before gradually increasing my activity levels.

The worst part is that, despite spending years solidly pacing and denying myself any kind of pleasures followed by thirteen years of continued pacing and only allowing myself the odd pleasures, I am still not well.  Not by any stretch of anyone’s imagination.  In fact, I don’t know of any patients who have had severe M.E. that have fully recovered, which is a bitter pill to swallow.  I have no more energy than any other M.E. patient.  What I do have is stamina and it’s that which allows me to do activities.  I also no longer wake each day feeling like I’m dying, or so sick I wish I were dead (and I did both for nearly a decade).  I still have pronounced symptoms including brain fog, feeling fluey, pain, muscle weakness, insomnia, nausea etc, but they only stop me doing things if I don’t stick to my pacing schedule and, on the rare occasions I take a calculated risk and over-do it the exacerbation in symptoms only lasts a few days not several weeks/months like they used to.

I still have a glass ceiling beyond which I can’t reach without risking a relapse.  I live a very structured life.  I haven’t been on holiday since 1996, not because I’m unable but because my body would rebel.  It’s unrealistic to live 50 weeks of the year in gentle, quiet, routined isolation then expect my body to cope with planning, packing, travel, vibrations, motion sickness, changes in climate, food, water and routine.  Not to mention stupendous amounts of stimulation in the form of noise, people, bustle, chatter with my travelling companion, scenery, things to do and the utter chaos of the outside world.  I wouldn’t expect a triple bypass patient to cope with all that the day after surgery and I don’t expect my sick self to cope with it either.  Ditto going to the cinema.  Or out in the evenings when I’m at my lowest ebb in terms of stamina.  Or reading.  Or cleaning the bath.  Or hoovering.  Or painting the Utility room, even though it desperately needs doing and my pre-illness self was perfectly capable.  And 1001 other situations I still avoid like the proverbial plague.

M.E. patients all want to get better but we want a quick fix.  A diet, a pill, a therapy which is going to instantly cure us.  Most can’t accept that currently the only way to improve our symptoms is years of dedication, hard work, deprivation and isolation.  And to be fair you can’t blame them.  But this is the hand we’ve been dealt and we have to be savvy about it and make a life that is as good as it can be.

I am never going to be well and able to do the things I could pre-M.E. and I have to make a conscious effort not to dwell on that or the grief, even 23 years down the line, would overwhelm me.  This is not the life an energetic, intelligent, bubbly, passionate, independent, hard-working woman would ever choose and I fought against it for years, with every ounce of my character, strength and determination…………and lost.  M.E. beat me every single time.  So I had to call a truce.  Had to give up some parts of my old life in order to keep some parts of my new life.  And at least I now have a life, when for ten years I had none.




Mistakes, I’ve made a few

Following on from one of my recent posts, I thought I’d share my experience of pacing.  Managing energy expenditure is important for many EDS patients and absolutely vital if you have M.E..  I’m going to talk from an M.E. point of view, because my EDS tiredness and my M.E. “tiredness” are leagues apart and respond to different techniques but I hope EDSers will still gain insight from my ramblings!

When I first got M.E. 23 years ago nothing was known about the disease and there was zero advice on how to manage the condition.  I had a very busy and active life, including a full time job with a two hour commute, being in the middle of renovating a three story Victorian town house, hobbies (aerobics, horse riding, weight lifting, tennis), friends, a boyfriend and an active social life.  When I first had symptoms I struggled on at work for six months until I became so ill I couldn’t get out of bed in the morning, let alone do a ten hour working day.  Looking back, this was my first mistake.  If I knew then what I know now I would have stopped work immediately and rested.

Having been forced to give up work I had a lot of boring time on my hands during the day, so for the odd few hours I had some energy I thought it was a good opportunity to catch up on all the jobs that needed doing in my house including pulling down and replacing the ceiling on the landing and getting on with doing up the top floor of the house.  I felt horrendous but I was a really hard working, motivated young woman and illness wasn’t going to stand in my way.  Mistake number two.

I had no intention of letting my disease interfere with my social life either, so on Fridays and Saturdays I’d lie in bed all day feeling like death warmed up then at 6pm drag my leaden body out of bed, shower, do my hair, put my slap on and get glammed up, ready to go out with my friends or boyfriend for a meal, to the pictures or out round town.  It used up my energy reserves for days but I needed to keep up the pretence to myself that this sickness thing was just a blip and wasn’t going to stop me living my life.  Mistake number three.

Of course, I got more and more ill and my relationship with my boyfriend began to suffer.  Scared I was losing him I agreed to go on holiday to Kenya and to cut a long story short this is where I got Meningitis and ended up nearly coming home in a coffin.  I lived, but developed very severe M.E. as a result and lost my boyfriend anyway.  Humongous, life-changing mistake number four.

Now I didn’t have the choice of pacing or managing my energy.  For the next four years it was all I could do just to breathe in and out and blink my eyelids.  In fact, I went through a stage where I was so weak I couldn’t even blink my eyelids and my GP said that ideally I needed to be on a ventilator to give my lungs chance to rest.  Instead I wasn’t even hospitalized and just left to lie on my own in my bed without medical care for 23 hours a day because back then M.E. wasn’t treated or taken seriously and on the odd occasions I did see a  Consultant it was a psychiatrist not someone who could actually physically help me.

After four years I came to terms with the fact that my old life was gone forever and even if I was going to be bedridden for the rest of my life I was still alive and needed my days to be as good as possible.  And this is when I started pacing.  There was still no advice on it, I just instinctively knew that my body was in total disarray and I needed to do something to help it to stabilize.  So I devised a schedule, breaking my day up into activity and rest (and by rest I mean lying down in a dark room with no radio or mental stimulation).  Make and eat breakfast, rest for one hour.  Talk to a friend on the phone for 10 minutes (I had a timer), rest for one hour.  Make and eat lunch, rest for one hour.  Have Mum visit for 10 minutes, rest for one hour.  Be on computer for 15 minutes, rest for 90 minutes.  Eat tea, rest for one hour.  Watch tv for half an hour, sleep (or try to!).  I’d have a bath once a week when everything else had to go on hold because bathing floored me.  And on Wednesdays I employed a nice lady to clean my house and do my shopping, so had extra rests that day because just her mere presence in the house killed me.

I kept this schedule up for an entire year with no improvement in my health whatsoever.  Everyone moaned about it.  My Mum struggled to come at the time I needed her to, my best friend wanted to chat on the phone longer than ten minutes, friends I’d made online wanted me to reply to their emails or chat on a forum I was on, and I was so bored when resting I was scared I’d literally lose my mind.  But I stuck to my guns and carried on with my plan.  And slowly, slowly it started to work.

After about 18 months I started to see symptoms I’d had for years lessen.  I started to feel like I had a little bit of stamina, if not energy.  And this carried on for the next 6 years with baby step improvement.  I was able to increase my activity times and decrease my rest times and eventually made it out of bed, if not really out of the house 🙂

A decade later I am now moderately affected by M.E. not severely and can have some semblance of a normal life but only because I still pace.  I’ve discovered that I have most mental energy and clarity first thing in a morning, so that’s when I do all my blogging, computer stuff and paperwork.  I have most physical energy between 11am-3pm, so that’s when I visit my parents, do my shopping and take the dog out (paying someone to take him out first thing in the morning when my physical energy is low).  I crash every afternoon, so am in bed from around 3.30pm to 7pm.  I no longer have to lie in a dark room, but if I want to nap I do, or I listen to a talking book, or maybe check Facebook.  Evenings I have another spurt of mental, if not physical energy, so I stay in bed but tend to edit my photographs at night or email friends.

I still only bathe twice a week because I still find it absolutely knackering and I lose a week every month to my period, when I’m in bed much more and can’t do much of anything else (which is why I’m finding peri-menopause difficult, not knowing when Aunt Flo will arrive).  In the winter I go to my Camera Club one evening a week, but make sure I rest more during both that day and the next.  I also meet my bezzie for lunch once or twice a month, but again this involves planning my energy, resting more the day before and two days after.  If I’m having a crap day, which I usually know the second I open my eyes in a morning, I make sure I use my mobility scooter more that day, sit with my feet up more, or lie down more instead of sitting – all things which help conserve energy.  Planning and pacing have become second nature to me and are still absolutely vital in keeping my M.E. stable.

Pacing doesn’t just involve mental and physical activities though.  I’ve had to change who I am as a person.  I’m inquisitive and passionate and when I was well I used to get involved in debates and follow politics and was active in various charities, but all that has had to stop.  Emotions, be they good or bad, kill me.  Laughing is exhausting, arguing is more so.  My best mate also has M.E. and when we meet up for lunch we inevitably start discussing the state of the world, but after twenty minutes we both decide we need to stop because we’re absolutely exhausted (I can literally see the colour drain from my friend’s face).  I have to curb my naturally bubbly nature and try to keep my emotions on an even keen, which to be honest I finally really hard!   Stress is an absolute no no and can have very serious consequences for my health, which is why I don’t tolerate bullshit here on my blog or in my private life.  There are no second chances – you stress me out you are not in my life anymore, end of story.   It’s a matter of survival.

Sadly there are things I can no longer do no matter how hard I try.  Exercise, obviously.  And read.  I’ve always loved books and they saved my sanity as a child, but reading is so exhausting and taxing it’s no longer enjoyable or feasible – I miss books more than words can say, though talking books fill the gap a little bit (and are massively more expensive 😦 ).

Of course, there are times when you have no choice but to push through the energy barrier, eg. to attend a wedding or funeral, or if something goes wrong in the house, or if the electric goes off, or if one of my parents is sick, but during these times everything else goes on hold.  I’m not on Facebook, I don’t blog, I often don’t bathe at all, I don’t keep up with the washing and ironing, I eat solely out of the freezer …….something has to give.  Nevertheless, crises or extra events always, always rob me of energy and I then need a period of extra rest and recuperation afterwards to regain my equilibrium.

Statistically, children who develop M.E. are more likely to recover than adults and, while this may be partly down to the fact that their immune systems aren’t fully developed, I personally also think it’s down to the fact that they can rest fully.  They don’t have to worry about finances, don’t have to cook, shop, clean or do laundry.  Don’t have to apply for welfare benefits or deal with leaking roofs or broken boilers.  Other than being socially isolated they don’t really have huge worries or stressors and this does tend to improve outcome (though of course sadly not for all kids).

I often see questions about pacing from newly diagnosed people on the ME Association’s Facebook page and think it’s pointless replying.  When you’re first ill there is no way you are going to pace effectively.  You haven’t twigged that you are going to be ill for years and that your life is changed forever.  Haven’t realized what’s involved or the extend to which being chronically ill is going to change not only you but everyone around you.  That knowledge and acceptance only comes with time and experience.








M.E. & The Menopause

I started puberty early, with breast development at 7 and periods at 11.  My periods have always been excruciatingly painful, which I now know is probably a combination of Ehlers-Danlos and Mast Cell Disease, with possible endometriosis thrown in for good measure (I have no intention of having surgery to find out, having lived with the pain now for 35 years).  Despite that, my periods have always been regular as clockwork – I could often tell to the hour when they would arrive, usually at 2am for some reason I can’t fathom!  Along with the pain came nausea, diarrhoea, menstrual migraines, insomnia and crushing fatigue.  As if this wasn’t bad enough, I’ve also always had painful ovulation (the technical name for which is Mittelschmerz). For 3 days mid-cycle I’ve always had awful insomnia, nausea, terrible back pain and cramping, stabbing period-like pain.  Being a girl sucks.

When I was very ill with M.E. my periods absolutely floored me and I honestly felt at times like I was dying.  I tried the contraceptive Pill which made me suicidally depressed, and shouldn’t have been prescribed in any event as I was bedridden and the risk of thrombosis (ie fatal blood clots) was all too real.  And for the past 15 years I haven’t been able to take pain killers either due to anaphylactic mast cell reactions.  I’ve also had god-awful reactions to both homeopathy and supplements.  I’ve basically had to just get on with it, using numerous hot water bottles, gel migraine strips, sea-bands for nausea and my TENS machine.

I didn’t think it could get any worse.  Think again.  About 18 months ago, at the age of 45, I entered peri-menopause.  There were probably signs before that, but because night sweats, fatigue and dizziness are all included in M.E., and flushing is included in MCAD, I just didn’t twig that the menopause was looming.  Until my periods started to go haywire.  I went from my usual 28 day cycles, to alternating between 21-24 days and 29-31 days – I personally seem to alternate each month, one month being a short cycle and the next being a long one.  The length of my bleeding hasn’t changed, but I can now also spot for up to 5 days after my period has finished.

Photo of peri-menopause menstrual cycle chart

My “allergy” symptoms have gone through the roof.  At times my skin feels like it’s being tickled all over by feathers – it’s really disconcerting, because I could swear something is physically touching my skin yet nothing is there.  I itch “down below” and must look very unladylike constantly scratching my crotch!  What little sleep I used to get has gone completely awol – I’m not awake due to night sweats, I just simply can’t stay asleep despite being so exhausted I can’t keep my eyes open past 9pm (but then wake every night at 1am and toss and turn until dawn!).  My sometimes fragile emotions are now on a permanent knife edge – I feel depressed most of the time and the lid I used to keep on my irritability has been lost in the wash!  I feel weepy.  A lot.  This is new for me as I’m simply not a person who cries much.  I feel overwhelmed and unmotivated and just generally crap.

I hadn’t subluxed (ie. partially dislocated) any joints before starting the peri-menopause, and now I’ve had four subluxations in less than 10 months.  The week before my period my collagen was always super stretchy due to changes in hormones, but now it seems my collagen is super stretchy all of the time and I’m increasingly worried I’ll start to actually dislocate my really hypermobile joints (eg. spine, shoulders, wrists, fingers, ankles).  When my periods were regular I used to make sure I wore all my joint supports and braces in the run up to my menstrual cycle, but now I have no idea when my period will be it’s just impossible to prepare.  I can’t bear my joint supports on in any event as my skin is just too painful.

November has been the worst month I’ve had in quite a few years.  I’ve spent several days in bed which I haven’t needed to do in a lonnnng time.  I feel very MEish: fluey, achy, completely drained and weak, with burning hot muscles and skin.  Constant sore throat, awful brain fog, severe nausea, crippling exhaustion.  My joints, knees in particular, are killing me – I feel like I have toothache all over my body.  As these symptoms have coincided with my starting the H1 anti-histamine Cetirizine I wondered if that was the cause, so I stopped it 3 days ago.  I’ve felt worse than ever.  But this has also coincided with ovulation, so now I’m wondering if that’s the reason I’m stuck in bed feeling like some dead corpse my dog dug up.  I was so nauseous yesterday all I managed to eat was 2 tiny slices of gluten-free toast, plus a cup of warm milk before bed.  My heartburn was awful, after being really really good for the past 3 weeks.  I barely slept a wink last night.

Today, as yesterday, I am stuck in bed terrified I am starting with an M.E. relapse.  My relapses often start like this: symptoms slowly stacking up, with me trying hard to ignore them.  Then they get so intrusive I can no longer ignore them and I know a period of being confined to bed is on the horizon.  The thing that worries me most is that I never know how long the relapse will last.  Days?  Weeks? Months?  The next 10 years?  Forever?  Is the peri-menopause to blame?  Are the anti-histamines to blame?  Is it just the time of year (I’m always, always ill over Christmas)?  I just don’t know and the not knowing is scary.  I’ll stay off the H1 anti-histamine for the next few days and see what happens.  If I don’t improve I’ll go back on it, because since stopping it my heartburn has worsened.

It’s a stunningly beautiful winters day here today: blue skies, foggy sunshine, crisp freezing temperatures.  I’d love to be taking my little dog out in the woods, feeling the crinkling leaves under my feet and seeing him bounding around in the bracken.  Instead I’ll struggle to go up the road through my village on my mobility scooter, with poor Bertie on his lead tied to my waist, and will come back feeling like I’ve been battered by a hammer.

It’s so tiring managing all these illnesses.  I never know what’s causing what and because of that I don’t know how to manage the symptoms effectively.  Please don’t tell me to go and get my hormones or my thyroid checked – I had all that done several months ago.  And the thought of trying Black Cohosh or DHEA, or progesterone cream or HRT or anything else that helps ‘normal’ people terrifies me – I just couldn’t cope with a mast cell reaction on top of already feeling this ill.  However bad it gets I’m just going to have to ride it out.  As my periods have always been horrendous, I’ve looked forward to the actual menopause and my periods being over and done with.  I only hope I can survive the transition period with my body and mental health intact.