Bring me sunshine

It’s summer here in the UK and for once it’s living up to its name.  Trust me when I say that up north that doesn’t happen much – it usually just rains a lot and is warm(ish) for a month or two before going back to being winter again ;-)  But this year we’re having a heat wave, and it’s glorious to feel the sun on my parched skin and breathe in hot air scented with the lavender which lines my garden path.

It’s also very lonely.

I’m in bed by 3pm nearly every day and as the afternoon sun streams onto the sheets I can hear the world continuing around me, oblivious to my absence.  Children playing.  The whine of lawn mowers.  Snippets of conversation as neighbours chat over garden walls.  The smell of bar-b-qs wafting on the breeze through my bedroom window.  Faint music rising from sun dappled gardens.  Clinking wine glasses, droning insects, the Pennine fells bathed in orange glow from the setting sun.  And me where I always am………alone here in my bed, with my dog and the telly for company, wishing I was out there too.

Most of the people in my village think I’m more than a bit strange.  They know I’m ill but the fact my illness doesn’t take the odd day off now and then, especially on a balmy summer’s evening, they find a tad anti-social.  I’m not included in the calls to “pop round later to down a beer with my name on it” not that I could go even if I were.  No-one tags me in a merry stupor on Facebook for the rest of the neighbours to see.

It’s nights like tonight when I’m acutely aware of my isolation and I have this huge ache in my heart to be out there, mingling, laughing, chewing the fat over world events, slumped in a garden chair with my bare feet on the cooling grass.  Drinking wine.  Being normal.   Just…..being.

“Full many a flower is born to blush unseen
and waste its sweetness on the desert air….”
Thomas Gray, Elegy Written in a Country Churchyard

 

 

Migraines & Headaches

I’ve always been “headachy”.  I remember visiting the doctor when I was in my early teens, about 13 or 14, as I’d started to get daily tension headaches which came on at around 2pm every afternoon.  In the 70s and 80s kids weren’t treated like they are now and I was made to feel like I was attention-seeking or didn’t like school and was trying to get out of afternoon lessons, neither of which was the case.  So I just took paracetomol and got on with it.  Hindsight’s a wonderful thing and I now know my mast cell issues ramped up at puberty, so looking back I’m assuming the headaches were hormone/mast cell related.  The daily headaches settled down after a year or so and I didn’t give them any more thought, though I went on to be a “headachy” adult.

After I developed M.E. in my twenties headaches and head pain in general were a daily occurrence, to the point where I was living on paracetomol.  I didn’t have my first migraine, though, until I was in my early thirties.  Mine started with Classic migraines, which involved auras.  This is fairly rare and only about 15% of sufferers have Classic migraines exclusively.  For me, the first sign I was getting a migraine was a dot of coloured light in my vision.  This grew to a small wavy line, usually in my peripheral vision, and eventually turned into a jagged multi-coloured light show a bit like looking through a Kaleidoscope.  My vision was often obliterated, and I always felt really spaced out and woozy, which meant I had to lie down.  I didn’t have any head pain with the Classic migraines though or any nausea.  The aura could last anywhere from 15 to 90 minutes, but the spacey feelings often lasted 48 hours after the event.  I didn’t take anything for these migraines, and often found if I ate some carbs (usually toast) at the first sign of an attack I could lesson the duration.

My thirties were a dreadful time, with an ever present dull, achy, throbbing headache and about 2 Classic migraines each week.  I was allergic to all the drugs used for migraine, like tryptans, and eventually became allergic to paracetomol and other painkillers.  I remember crying like a baby when I had anaphylaxis to paracetomol and wondering what on earth I was going to do for pain relief.  But actually, it turned out to be a blessing in disguise.  After stopping all drugs due to my reactions my headaches improved by about 80%, although it did take about 6 months.  Again, with the benefit of hindsight I realise I was having headaches to the headache medication which is actually more common than people realise.

After stopping the drugs, and by my early 40s, I hardly ever had a headache, and the Classic migraines were down to about 3 a month.  Which would have been fabulous news had the Common migraines not begun.  I stopped having migraine with aura, and started instead with the more commonly known migraine symptoms: prickling skin down the side of my face, intense pain over one eye (sometimes turning the eye blood shot), painful stuffed up sinuses, and pain over one side of my head which felt like a rat was eating my skull from the inside.  Some of my Common migraines have been so painful I’ve literally curled up in a ball and prayed to die.  The migraines can last anywhere from 24 to 72 hours and at times I literally haven’t been able to move my head for the absolutely horrendous pain.

About 3 years ago the nausea began.  Until then I hadn’t really had nausea with my migraines, but now I feel sick to my stomach and literally can’t eat a thing.  I have actually vomited, although this is thankfully rare.

Along with the nausea came a switch in sides and intensity to the pain.  Before this my pain was always right-sided, but this has now changed and I also have left-side only pain, or all-over head pain, both of which is excruciating and I know if I get a left-side only migraine it’s going to be a 3 day job.  I also still feel spaced out, often dizzy, extremely tired and can be very dyslexic for some days following an attack.

On top of the Classic and Common migraines I’ve also had Menstrual migraines for the last decade.  June was the first month in 10 years I didn’t have a period-induced migraine, though I’ve made up for it this month by having one which has lasted 3 days.  I also tend to have a migraine around day 17 of my cycle for some reason I can’t quite work out.  I don’t know whether the menopause is going to help the situation, or make it ten times worse due to falling hormone levels.

It isn’t all doom and gloom though.  This year has been the best for 2 decades in terms of headaches and migraine frequency.  I hardly ever get a headache, and my migraines are down to about 2 a month.  In fact in June I went 6 entire weeks migraine-free – the longest period in 20 years :-)  I’m not sure if this is down to my low histamine diet, or the peri-menopause and a change in hormones.  Whatever, I’m just grateful!

Coping with the pain of migraine when you’re almost totally drug allergic is hell…….really, there’s no other way to describe it.  All I can do is wear a cool gel strip on my forehead, put either an ice pack or hot water bottle on my head, wear a hot neck wrap to help the muscular tension and wear acu-pressure bands on my wrists for the sickness.  I’ve got to be honest – none of it helps much.  Sometimes when the pain is on the right-side of my head I can still function and watch a bit of tv, but when the pain is left-sided or all-over I just have to lie in bed until it passes.  I’ve just spent 3 days in bed with period pain, backache and a nausea-generating migraine, which started on the right-side of my head but switched on day two to the left-side – it’s been really boring as reading, watching tv or being on the computer just made the situation 10 times worse.  And then suddenly at 4pm this afternoon the pain just………..disappeared (though I still feel sick as hell)!

I was going to go into other types of head pain in this post, but it’s gotten too long already so I’ll save that topic for another day.

My Mum gets Classic migraines with aura and mild headache, but thankfully not Common migraines with the severe head pain or nausea I experience.  I also have a cousin with an extreme and rare migraine disorder called chronic hemiplegic migraine, so migraines obviously run in our family.  I have a pet theory that mast cell disorders run in our family too, but can’t get any of the affected family members interested enough to find out which is frustrating.  My biggest hope is that as I age the migraines will lesson, especially as they are currently mainly connected to my menstrual cycle.  Time will tell!

 

Is your diagnosis correct?

When I first received my diagnosis of M.E. back in 1994 I really wanted some other disease – one which had a proper test, proper treatment and preferably a cure.  The fact that M.E. currently has no diagnostic laboratory test means that, according to the CDC, 40% of people with a diagnosis of M.E. actually have some other medical issue.  Many people, including some doctors, hone in on this fact and have a tendency to make out that M.E. doesn’t exist as a disease entity in its own right at all and that anyone with my symptoms must have some other, more easily explainable, illness.  They totally forget to hone in on the fact that the research shows the majority (60%) of people who have my symptoms actually do have M.E.!

Hypermobile Ehlers-Danlos doesn’t have a laboratory or gene test either,  and diagnosis is made from symptoms and clinical history (just like M.E.) yet not once has my EDS diagnosis been questioned.  Funny that.

I have regular comments on my blog, from lovely well-meaning people who I know are only trying to help, suggesting I have a variety of diseases from Lyme to Coeliac, Mitochondrial disease to bromine toxicity.  I already have 3 painful, exhausting, frightening illnesses and genuinely don’t want any more ;-)  I’m going to address the diagnosis issue in this post so we can hopefully put the issue to rest.

Lyme Disease

This is caused by infection from a tick bite and shares many symptoms with M.E.  It can be difficult to diagnose as laboratory tests are notoriously unreliable, particularly if you are unaware you’ve been bitten and don’t get tested for some years after the event.

I don’t have Lyme disease.  I first became ill when I worked on a cruise ship.  No animals on board and ticks don’t live in the middle of the Atlantic ocean.  I was fit as a fiddle one day, and sick as a dog the next due to a tummy bug and allergic reaction to the drug they gave me to stop me vomiting.  Classic post-infectious M.E. symptoms developed overnight, which is why I was lucky to be diagnosed with M.E. within 4 months of getting ill.  If there is a poster child for a diagnosis of M.E., I’m it ;-)

Coeliac Disease

Some people are allergic to gluten, a protein found in various grains including wheat.  One of my best friends has Coeliac Disease (as well as M.E.) so I know quite a lot about the disease, how it’s diagnosed and how it’s treated.

I don’t have Coeliac Disease.  My blood test was negative, and my biopsies were also negative.  I’ve even had my poop tested which was also totally normal.  Over the years I’ve gone on no less than 3 gluten-free diets, not one of which has helped a single one of my symptoms (in fact the last trial made me feel dreadful).  My Coeliac friend has been very strictly gluten free for 8 years now (she is tested yearly) and it has made not one jot of difference to any of her M.E. symptoms – that would be because M.E. isn’t diet related.

Gluten Intolerance

This isn’t a true allergy to gluten involving an IgE reaction, but a chronic immune response.  I don’t have gluten intolerance.  I’ve had both skin prick testing and IgG testing which were negative and I’ve found no benefit from a gluten-free diet.  However, that’s not to say I won’t develop a problem with gluten in the future – my immune system seems to cope with various food items for years, then suddenly decides it doesn’t like them anymore and revolts!  But currently gluten is causing me no issues.

Fructose/Diary/mould and other allergies/intolerances

I’ve had skin prick allergy testing and am not truly allergic to dairy products, moulds or any of the common allergens.  I’ve also had blood IgG tests for dairy, moulds and other allergens and all is fine – in fact my allergy load is so low it barely registers (which is one of the reasons I knew I had mast cell disease/histamine intolerance).

It’s true I haven’t had a fructose absorption test, but then I don’t have any symptoms after eating fruit, sugars or carbs so it’s not something I’ve ever felt the need to do.  I have enough on my plate without looking for problems that aren’t there.

I’m sure if I had extensive testing I’d be mildly allergic to a few things that haven’t been picked up on (I know I have a problem with nickel for instance, so simply avoid wearing jewellery etc. with nickel in it), but nothing severe enough to explain my symptoms.

Mitochondrial Disease/MTHFR/genetic diseases in general

I’ve had my genes tested at 23andme and thankfully didn’t score at high risk for any genetic disease – not even Dupuytrens Contracture which my Mum has quite severely.  Of course, that’s not to say that I won’t get Dupuytrens, or some other disease, as genes only play a part in whether or not someone will develop a disease – there are lots of other factors involved.

I’ve not delved into the MTHFR/methylation arena  – it’s something I might do one rainy day when I’ve got nothing else on, but then again I might not too as I’m not sure what bearing it would have on my ME, MCAD or EDS.  I have a terrible time tolerating supplements, and certainly can’t tolerate methyl-B12 which is one of the things given to people with methylation issues.  My diet is already good, with loads of fresh fruit and veg and everything is organic.  I already take epsom salt baths.  So I’m not sure what good knowing I have the MTHFR mutation would do me.  I’ve got to be honest and say that IMHO the whole MTHFR thing is just the latest craze in a long line of crazes.  Now we can study the human genome we’re going to find all sorts of abnormalities.  Just because you have a gene abnormality doesn’t mean to say it causes you any problems whatsoever.  If a gene abnormality is backed up by blood testing (eg. regarding MTHFR if other tests show you have excess glutathione or high blood pressure, fair enough) but on its own I’m not sure a gene mutation means much.  I actually think you could drive yourself nuts looking at your genes and their many anomalies, and I have enough on my plate with the three diseases I know for sure that I have without looking for any  more.  However I only ever say on here what I’m doing and what’s best for me.

Mitochondrial disease: lots of studies into ME have looked at mitochondria and nothing conclusive has been found.  That’s not to say ME won’t turn out to be a mitochondrial disease but at the moment it’s not looking that way.  MCAD has been shown to affect the mitochondria, but isn’t a mitochondrial disease per se – abnormal mitochondrial function is a symptom of MCAD, not a cause (see my Canary post for more info).  Ehlers-Danlos is a genetic defect of collagen, and nothing to do with mitochondria.  I had boundless energy as a child and there is no history of birth defects, poor growth, autism or any other symptoms of genetic mitochondrial disease in my family.  So although my mitochondria may now be malfunctioning as far as I’m concerned it’s a side-effect of another disease process, and not the cause.  In any event there is no diagnostic test for mitochondrial disease, and the treatment consists of doing everything I’m already doing: pacing activities, avoiding exposure to viral illnesses, conserving energy, ensuring adequate hydration and nutrition.

Testing

M.E. is a diagnosis of exclusion and in order to receive my diagnosis I was tested extensively.  I’ve had:

  • MRI scans of my brain, neck, spine and entire GI tract.
  • CT scan of my spine and sinuses.
  • Heart scan.
  • Ovarian and uterine scan.
  • EEG which measures brainwave activity.
  • ECG which measures heart activity.
  • Endoscopy/stomach & duodenum biopsy.
  • Faecal inflammatory test.
  • GI transit study using Sitz markers.
  • Chest x-rays – dozens of them.
  • Every blood & urine test known to man, including the 2 lyme disease tests, gluten, hormone profile, thyroid (several dozen times), vitamin and mineral profile (including B12 and iron), melatonin, serum histamine, and all the standard FBC, ESR, CRP, electrolytes, clotting factors, cholesterol, lipids, glucose (including a fasting glucose/provocation) etc.
  • H-pylori biopsy.
  • Mycoplasma and Chlamydia pneumonai test (this was thought to be the cause of ME in the 1990s).
  • Overnight laboratory sleep study.
  • IgG, IgE and skin prick allergy testing.
  • DEXA bone density scan.
  • Peak flow to measure lung function.

and probably two dozen other things over the years that I’ve forgotten about.  Apart from my sleep study every single test was normal.  In fact, some things like glucose and cholesterol weren’t just normal they were superb.  It’s hard to be this sick, and this healthy, all at the same time ;-)

Despite all these extensive tests, however, my Ehlers-Danlos was missed completely, even though all the signs were there and my hypermobility was frequently commented on.  EDS is considered rare (although I disagree!) and many doctors here haven’t even heard of it, so I don’t blame anyone for not picking it up.  I didn’t expect my MCAD to be found as only a handful of consultants know about it yet here in England.

From what I know about M.E., EDS and MCAD (and I know a fair amount) my symptoms fit the bill and I’m happy that my diagnoses are correct.  I may develop or acquire other diseases as I age but I know my body extremely well and I’m sure I’ll recognise when something changes and needs further investigation.

Indispensible

For 14 years I was a volunteer board member of a national UK M.E. charity and designed their newsletter.  Following a fall-out with a friend, who was also a member of the group and published a private letter I sent her on Facebook, I felt my position was untenable and I made the sad decision to leave the group and resign my position.  That was in February and I haven’t heard a word from either the group, its members or my former boss since.  Not a “thank you” for all my years of service, a goodbye or good luck card, an email to ask how I am after the very upsetting incident, nor bugger all else.  Not that I did the work for any kind of thanks, but it still would have been nice to have had all those years of volunteer work acknowledged, particularly as I was totally bedridden and barely able to function when I first took on the post.  I have to admit to feeling a teeny bit upset about the situation and like my contribution wasn’t valued.

I went off sick from my work in local government in 1994 when I was in my mid twenties.  I was good at my job and had been head-hunted by the political wing of my local Council so that when I became ill I was doing my own job, my boss’s job as she was off on maternity leave and a third job in the political office (which ironically was to cover for someone who was off sick!).  I was hard-working and conscientious to the point where I used to bring home my significant workload on weekends just to get caught up, for which I was naturally never paid.  I thought I was indispensible.  I liked the people I worked with and some of the girls and I would go out for lunch or evenings out together. That was 20 years ago now and I’ve never once in all that time had a get well card, phone call, or solitary bunch of flowers from any of my former bosses or workmates.  I’m sure they’ve forgotten I even exist.

When you become sick you worry yourself stupid about work: I’ve got so much to do!  How will they manage without me?  How will I cope financially if I’m not in employment?!  I tried everything to get back to work, making my health ten times worse in the process, and felt terrible guilt over how I’d let everyone down.  But the truth is if you go on long-term sick you do manage – you don’t have much choice.  And the world goes on without you.  Just remember, “the graveyard is full of indispensible people”.  Don’t make yourself worse out of obligation or duty – your employers and colleagues damned sure wouldn’t do it for you!

Weekly roundup

I’m doing my weekly roundup a few days early, as I’m not feeling great and have decided to take the weekend off from the computer and have a proper rest.

I saw the Dentist on Wednesday re my root canal, which despite a week’s worth of broad spectrum antibiotics is no better.  He asked me if I wanted to try another type of antibiotic but to be honest after 2 months of treatment I’ve had enough and just want the bloody thing out.  The Dentist says in his whole career he’s never had this happen before: the x-ray looks fine, the tooth looks viable, there’s no sign of infection, yet it’s still giving me toothache and is sore to pressure :-/  If I had a tenner for every time a doctor has said to me “I’ve never had a patient with this before!” I’d be rich.  I already have a hospital appointment at the end of August to see the Maxo-facial consultant re my sub-luxing jaw joint, so the Dentist has asked that I have my extraction appointment at the same time – I won’t actually have the extraction that day you understand, just the consultation.  So it looks like I’m facing another 2 months with tooth ache.  Super.

I was feeling very sorry for myself regarding the tooth situation until my Mum told me that my Nanna had all her teeth pulled at the age of 15.  The dentist came to the house, gave her a whiff of Chloroform and pulled every single tooth from her head.  She apparently came too with blood and teeth all over the kitchen floor and was told she wouldn’t be given any dentures for months until the gums had healed.  What and how she ate in the meantime is beyond me and I can’t imagine the pain (no painkillers then folks!).  My step-dad was only 20 when he had all his teeth removed, and his sisters were 17 and 18 respectively.  We don’t know how lucky we are these days.

I think there must be some kind of lingering bone infection or abscess at my tooth’s root because I’ve not felt well for weeks.  I feel MEish and very mast cell-y and am reacting to all sorts of things which don’t usually bother me – mast cells can play up when there is any kind of infection in the body.  The very worst thing is I’ve started having a mild anaphylactic reaction to the H2 antihistamines I take for my rampant reflux, so I’m having a break from those for a few days to see if it will calm down.  Of course, my reflux was barely in control on the tablets, so off the tablets it’s bloody killing me.  I’ve never known pain like that of stomach acid as it literally burns the oesophageal lining causing ulcers which food and drink have to pass on their way down.  The pain radiates through to my back, right up my spine to the base of my neck, and outwards to underneath both armpits.   I also inhale acid into my lungs which gives me a horrible cough and makes me feel frighteningly tight-chested and breathless.  I’m swigging Gaviscon advance like it’s going out of fashion.  I do have a Proton Pump Inhibitor to try from the Doctor, so might give that a bash on Monday.  I’m gutted I’m reacting to the H2s after being OK on them all year *sigh*.

I saw my lovely O.T. on Tuesday re my sprained ring finger, and both my middle fingers which have become troublesome in the past few months.  I now have 2 more Oval-8 ring splints for the PIP joints (ie the knuckles) in my middle fingers (I already have them for the DIP joints, ie the joints nearest the nail), and a Murphy ring splint for the PIP joint of my sprained ring finger (the Murphy splints look lovely but give me welts due to my dermographism so I usually avoid them, but in this case the size 5 Oval-8 was too small and the size 6 Oval-8 was too big, whereas the size 6 Murphy fitted beautifully – I’m hoping that when the swelling settles down I can wear the size 5 Oval-8 instead).  In the past ring splints have worked well for me.  I’d had pain in my thumb for 3 years before getting a splint, but after wearing it for 7 months and giving the ligaments chance to heal I no longer need to wear it as the pain has totally gone :-)  So if you have EDS and are given braces or splints don’t panic that you’re going to have to wear them forever – it might not necessarily be the case.

I’m feeling yuk and more than a bit down despite the glorious weather here in the north of England.  I also still don’t have my camera back from Olympus (it’s been over a month now) so thought “fuck it!” and bought a 3rd hand body off Gumtree to use as a spare despite the fact I genuinely can’t afford it.  Like, really.  I’ve never been so skint.  But I’m so down in the dumps I needed something to cheer me up and take my mind off how nauseous I feel and how much pain I’m in.  This afternoon my Mum is dog sitting and I’m off into the wide blue yonder to take some pictures while the sun shines :-)

Poppies & hoverflies in a wheat field

Spiders web on Himalayan poppy seed heads in my garden

The Greasy Pole

I’ve had M.E. for so long, and have written about it so extensively over the years, that I forget anyone reading this blog won’t know the story of how I managed to go from being bedridden for nearly 10 years to being able to live largely independently, so I thought it was worth a post.  Obviously I can’t go into the ins and outs of a 20 year battle in one page, so this is the condensed version, but at least it gives you an idea of the journey.

For the first 18 months of having M.E. I was “mildly/moderately” affected (ie. unable to work but able to self-care and wasn’t housebound).  If you’d asked me at the time, however, I would have said I was really really ill – I had no idea at that time how bad M.E. could get.  However, after contracting meningitis on holiday in 1996 I became severely, sometimes very severely, affected (ie. bedridden and largely unable to self-care).  I was 26 years old.  Linda, severely affected by ME for many years, shows in this Youtube video how ill I was at my worst – I was told on two occasions I was critically ill and might not make it through the night:

For 6 years I did everything to get well.  I spent frenzied hours researching on the Internet and belonged to dozens of online groups that discussed the latest “cures”, which at that time was ice baths (Barry Sheen the motorbike racer apparently got well from ME doing those) and Ampligen (whatever the hell happened to that?  Obviously it didn’t work!).  There was not a diet, supplement, drug or therapy (hands on healing, acupuncture, reflexology, massage, osteopathy/lymphatic drainage, cranial osteopathy, chiropracty, electrical stimulation, hypnotherapy, Tai Chi……I was even chanted over by a proper Tibetan monk once) that I did not try.  And none of it worked.  None of it.  OK, some of it helped symptoms a little bit but it was a drop in the ocean.  Some of it made me so ill I was hospitalized with what I now know to be a severe mast cell reaction.

After 6 years I had a lightbulb moment and it was this: there is no cure for M.E.  If there were a cure there would not be a (conservative!) estimate of 4 million people worldwide with the disease, in every country from South Africa to Norway.  And if there ever were a cure developed I would not have to read about it on an obscure internet group – it would be on the 6 o’clock news, the recent hoo ha about XMRV proves that.  So I stopped everything, apart from drugs I needed for pain relief, sleep and a few other symptoms such as severe muscle spasms and finally accepted that I was desperately ill and likely to remain so for the rest of my life, because after having severe M.E. for several years the prospect of recovery was zero. And in a strange way this acceptance finally brought me peace.  I could move on.

Despite being horrendously ill I was still alive, and I had to find a way of living with my disease, not merely existing.  I battled very hard to get the disability benefits to which I was entitled, which enabled me to employ help in the house for a few hours a week.  I got Social Services involved and got a wheelchair, ramps, perch stools, kettle tippers and other disability aids for my home including an electric armchair which went totally flat like a bed (I couldn’t sit upright for more than a few minutes without feeling like I was dying).  I found simple things which helped my symptoms, eg. wearing an eye mask and ear plugs to sleep in, warm baths with Epsom Salts, my TENS machine.  I bought every electronic energy-saving gadget I could find and made my bedroom into a bedsit which I rarely ventured out of.  Instead of spending my precious energy researching and being politically active (I left this to healthy people who had the energy for it!), I started to cultivate online friendships with other people in my position some of whom I still have to this day.  I stopped mourning my ‘old life’ – it was gone forever.

But I didn’t give up hope.  Hope that one day I would be better, albeit never ‘well’.  The human body is an awesome vehicle and I wanted to give mine the best opportunity I could to heal itself.  For me this involved 3 things:

  1. Meditation/breathing/visualization & avoiding stress.  I didn’t know I had Mast Cell Disease then, I just knew that stress floored me.  And I spent most of my time just lying in bed staring at the ceiling as I was too ill to do anything else, so I began to use this time more productively.
  2. Eating well, including some raw meals, lots of fruit, probiotic yoghurt, juicing with greens, and sprouting my own seeds, beans and legumes – I was obviously ahead of my time with the sprouting, as a recent interview on the Low Histamine Chef’s website is now advocating this as a natural way to increase DAO levels!
  3. Pacing – the hardest thing I’ve ever done in my life.  Ever!

My reasoning behind pacing was that my body was in utter disarray.  My nervous system was on constant red alert, I had horrendous insomnia which drugs didn’t really touch, my brain fog was beyond words (literally) and I felt my body needed some kind of stability.  So I devised a schedule which I stuck to religiously every day.

I first wrote down meal-times (preparing, eating, clearing away), then other things I absolutely had to do (feed the cat, bathing, household things like paying bills or food shopping), then the times my carer was there (having other people around really zapped my energy) and made up a timetable with set times for all these things.

I then built in activities I’d like to do: watch TV, chat on the phone to a friend, be online, see my parents and gave each one a set time period (10 mins on the phone once a week; 30 mins online daily; 1 hr TV watching in 10 minute chunks etc.) and I STUCK TO THE SCHEDULE, using a timer to ding when the time was up!  This did not go down well.  My Mum was working full time and had a really busy life and struggled to fit in seeing me in her designated time slot.  I went from speaking to a friend daily (which used half my energy reserves for the entire day, crazy!) to speaking to her for 10 minutes once a week.  But I was really selfish and stopped trying to please anyone but me – trust me when I say it didn’t come naturally and involved a shed load of guilt.

I kept this daily schedule up for an entire year before I started to see any improvements whatsoever.  Did I feel it wasn’t working?  Oh yes!  Was I bored to the point of going insane?  You bet-ya.  Did I want to give up?  Hell yes!  Was I frustrated beyond all human endurance?  You have no idea!  Did my nearest and dearest think I was mental and try to subtly encourage me to stop?  Absolutely! Most people who try pacing give up within a matter of weeks, but for some bizarre reason I kept going.  And slowly, slowly, things began to change.

The improvements crept up on me without me really noticing.  Then I’d realize that I hadn’t had a sore throat in 3 days.  Or I’d managed to get a block of 4 hours sleep.  Or I’d come off the phone without feeling like every ounce of energy had been sucked from every cell in my body.  My stammer disappeared.  My legs stopped jumping with violent spasms.  The outbreaks of goosebumps all down my thighs were less frequent.

It took another 4 years to make a substantial recovery to where I am today.  I moved house in 2004 and that was the start of a new chapter for me.  I can now drive, albeit the car has to be automatic.  I can cook a meal (I’ll never forget the first meal I cooked myself again – mushroom & pasta gratin, damn it was good!).  I can chat for as long as I like within reason.  I can spend hours on the computer.  I no longer have severe chemical sensitivities.  I can even walk short distances!  I am still largely housebound, but rarely bedbound, although I do still spend a large part of my day in bed (but still being active, like watching TV, crocheting or being online).  I still have bad times but they pass.

It hasn’t all been plain sailing.  I’ve had several really scary relapses along the way (including two hospital admissions) and at the time had no idea if that was it forever or whether I’d “climb back up the greasy pole” as one friend puts it.  Luckily for me I’ve always climbed the pole.  And I do know that I’m lucky. I don’t take my improved health for granted, because I’m well aware that at any time it could all be taken away again – I’m not ‘cured’, just in partial remission.

During my severe M.E. years I had no clue I had Ehlers-Danlos or MCAD.  My pain became severe in 2010 which is how the EDS was finally diagnosed.  And in 2012 I had a very frightening time as my MCAD finally exploded, although it took another 18 months to discover what was going on.  So now I face new challenges…….but I’m glad I don’t have to face them on top of severe M.E. – that really would have been too much.

I wish I had some magic bullet for you, such as drinking Whale pee or chanting on a full moon, that would help all of you recover from M.E…………but I simply don’t.  My partial recovery has been a mix of dedication, finding what worked for me (drugs etc. will be different for all of us – I currently have a friend doing quite well on low dose Naltrexone after being bedridden for over 15 years) and pure luck.  But at least I’ve proved it is possible and to never give up hope.

Galloping Dogrot

I must admit I’m always saddened when people leave critical comments on my blog or personally attack me (or anyone else brave enough to put themselves “out there” for the world to see).  Anyone reading this can see how challenging living alone with complex ill-health and disability is.  How negative or critical comments aid my, or anyone else’s, journey is hard to fathom.  As my disclaimer (available on every post page) states: “I’m not a mast cell or EDS expert and have no medical training.  I’m just sharing my own personal thoughts and journey”.   I don’t give advice and never have.  If my readers want to try the things I’m trying I hope they help.  If they think I talk a load of old codswallop I’m sure they’re not alone ;-) .  All I’m doing is using my precious energy to share my 20 years of experience with ill health in the  hopes that some of the things I’ve tried will help other people with similar symptoms.  I don’t need to be psycho-analysed for my motives in writing a blog or criticized for my personal thoughts or feelings.  I think some of my followers find my personality challenging and want to change/improve me more to their liking, while others think I talk out of my arse, in which case there is an “unfollow” button on every post you receive – just click it and find some other blog you like more.  I promise I won’t be offended.

As I said in my last post, I’ve not felt well enough to experiment with any new recipes lately.  I did have another attempt at making rhubarb jam, using jam sugar with added pectin, and yet again it failed to set properly!  I had zero problems last year making jam with this recipe so I’m clueless as to why it’s not working this year.  I’ll wait another month for the rhubarb to mature before having another bash.  I’m also in the process of experimenting with mango chutney (so far it’s OK but nothing special) and basil pesto (there are lots of recipes online for simple pesto and they are all truly vile!).  I’ll let you know if I ever make a good job of either.

I have, however, added a new recipe for Courgette (Zucchini) Lasagne to the site.  Some people might find it a bit bland, so feel free to spice it up using chilli, different vegetables & herbs.  I did some yeast-free garlic bread to accompany it and thought it was rather nice.  See the Main Course section of the Recipe page and scroll down.

Photo of courgette lasagne

 

As regular readers will know I sprained the PIP joint of my right ring finger 2½ months ago and        Photo of sprained ring fingerit’s still giving me gyp (healthy finger on the left, sprained swollen knuckle on the right).  Yesterday, all out of the blue, a red bruised lump (see picture below) appeared to add to the swelling which is already there.  No idea what it is and I’m putting it down to “galloping dogrot” a common affliction in my house to explain the unexplainable ;-) .  I’m seeing the OT on Tuesday so will ask her what she thinks is going on.

I’m back at the dentist in the morning with my root canal – wish me luck!

 

Red lump

Red lump