Fanfare please

Overnight my blog has had its 200,000th visitor.  Holy crap!  I had no clue when I started writing that anyone would a) be able to find it on Google or b) be remotely interested in reading it.

Although the blog covers both M.E. and Ehlers-Danlos Syndrome my traffic statistics show that most visitors are interested in histamine.  The amount of people all over the world who are suffering allergic-type symptoms yet not being found to be allergic to anything is staggering.  Yes, I get people visiting who have one tiny little hive and think it’s the end of the world (kind’ve want to slap them and tell them to quit whining ;-) ) but at the other end of the spectrum are people with really serious symptoms which massively affect their quality of life and in some cases are life-threatening.  Histamine Intolerance isn’t even recognised in the UK and Mast Cell Activation Syndrome doesn’t fair much better, which leaves sufferers totally out in the cold.

Through sheer numbers of sufferers, HIT is making inroads into the public consciousness.  This recent article written by journalist Bee Wilson, the wife of a sufferer, appeared in the Telegraph recently and you don’t get much more mainstream that than!   However, despite this and the fact that the first immunologist I saw later said (after I’d been to London and received my HIT diagnosis and wrote to inform him of it) that he recognises people can have low levels of DAO, HIT was never even mentioned at my appointment and still isn’t tested for on the NHS.  The medical profession, it seems, is lagging way behind the knowledge of its patients.

I attended an international Mastocytosis conference in 2013, where one of the subjects covered was “MCAD – where do we go from here?” and at the upcoming EDS UK conference in October Dr Seneviratne is speaking on mast cell/histamine disorders in Ehlers-Danlos which I hope other medical professionals attending the conference take note of.  But, again, most Consultants working in the field of immunology and allergy still don’t even recognise MCAD exists, let alone diagnose and treat it.

We are making baby steps in recognising people have issues with histamine production and mast cell activation which don’t fit previously recognised diseases like allergies and Mastocytosis, but we have a lonnnng way to go.

In the meantime we’re dependent on a few people sharing their histamine stories just so’s we don’t feel quite so alone and isolated with our weird and wacky reactions to life.  Until I found other people online with similar symptoms to me I honestly felt like I was losing my mind, and the medical profession had labelled my anaphylactic reactions to food and drugs as “panic attacks”, so I stopped going to see doctors altogether which looking back could have killed me.

“Thank you” to all all my visitors and for the lovely, knowledgeable, caring people who comment on my blog posts.  A big “thank you” too to the members of this blog’s little support group who have helped me through some tough times this year – I hope to meet some of you in person at the EDS conference in a few months time :-)  I also follow the lives of some truly lovely people via other blogs, who I will probably never meet in person but who I already class as friends.  For diseases which are considered “rare” there sure are a lot of us about!  I had no idea when I wrote my first post on 17th April last year that it was all going to get this big, but I’m so thankful I chose to share my journey with you all – you’ve given me so much and your friendship and support have been invaluable.

Weekly roundup

I did a big Ooops this week.  I’ve been working on a new section, called Cooking Tips, to add to the Recipe page.  I have no idea how it happened but somehow this was published as a blog post, when it wasn’t meant to be any such thing.  So just ignore it, cos it wasn’t finished.  To be fair I’m amazed a cock-up like this hasn’t happened sooner being as though I spend my whole life in a mental twilight zone ;-) .

My attempt at having a holiday has only been partially successful.   I’ve found I’m quite bored just blobbing about doing not much of anything and more aware of all my symptoms as I have no distractions.  However, I did have a day out yesterday at an international ceramics/pottery fair with a friend.  We took a little picnic which we ate sat on the grass under a shady tree, before having a wander round all the stalls.  I couldn’t afford to buy anything of course, and I’m not into buying ‘stuff’ for the sake of it anyway, but it was something different to do and I enjoyed the gossip with my mate.  My legs are sodding killing me today but :-/

It’s the school summer holidays for the next six weeks here in the UK and my dog walker has two children so she’s only walking Bertie 3 days a week instead of the usual 5.  You wouldn’t think taking the dog out for 2 extra days a week would affect me, but as I was already shattered I’m really feeling the extra activity.

Speaking of the Bertster he inadvertently caused me injury again this week.  I looked over my shoulder in the driveway to see where he was and felt something ‘go’ in my neck which immediately went into a huge spasm.  I imagined I’ve strained it and for the last 3 days haven’t been able to turn my head to the left.  Good job when I’m driving up to roundabouts I only have to look to my right, but I’m struggling with junctions ;-)

My sprained finger, and the lump which has developed which I think is probably bursitis, aren’t getting any better and after 3 months I finally decided I should probably see my doctor just to see if all is OK.  I rang for an appointment on Friday.
“Is it an emergency?” asks the receptionist.
“No” I reply.
“In that case the earliest general appointment I can book for you is 26th August”.
“OK, I’ll just leave it then.  Thanks.” what the hell I’m thanking her for I don’t know!
In another month my finger will either be better or have dropped off.  This is why I rarely visit my GP.  You have to decide a month in advance that you’re going to be ill or injured, and then all she offers is drugs which I can never take, so really what’s the point?!

I’m still having awful 24/7 nausea, griping stomach pains, muscle spasms and loose stools which I’ve never had before in my life.  My nervous system is also in absolute hyper-drive, my all-over constant pins & needles are driving me insane, and I feel like my entire body is plugged into an electric socket.   I’m so fed up of yet something else playing up I can’t even discuss it :-(

I was hoping to do a poll on the effects of Sodium Chromoglycate for those who have tried it but something is blocking the pop-up window needed to do this.  I’ve tried disabling my antivirus.  I’ve tried disabling my ad blocker.  I’ve checked that pop-ups aren’t blocked in my Firefox browser.  I’ve tried using Internet Explorer instead.  And it still won’t bloody work.  I hate technology and seriously don’t know if I can be arsed contacting the help forum for advice.

Having read this back I sound like a right grumpy old cow.  That’s probably because I am a right grumpy old cow and I really should just come to terms with the fact ;-)

 

On my jollies

I haven’t had a holiday since 1996.  This would be because:

  1. I can’t afford one
  2. I’d have to go self-catering because of my diet restrictions, which would be a teensy bit like a busman’s holiday (scrap that – it would be no different to my life at home)
  3. It’s zero fun on your own
  4. by the time I packed, travelled and got to where I was going I’d be so ill I’d spend the entire week in bed, so really what’s the point?!

but that doesn’t mean I don’t need one.  Although I try to stick to a schedule and take 2 days off a week from doing chores, I still feel like I spend my entire life doing ‘stuff’ merely to exist (cooking, washing, dealing with the never ending post which plops onto my mat, looking after my dog, looking after my Mum and currently my Dad too as he can hardly walk due to a hernia, etc. etc.).  And because we hardly ever get good weather here in the north of England when we do have a nice spell instead of enjoying it I do all the outside jobs which can’t get done at any other time of the year.   In the past month I’ve spent 2 hours hanging a new gate, then 4 hours sanding and painting it (I’d love to have paid someone to do this for me but I’m too skint).   I’ve washed all my bedding (eg. duvet, pillows) and the dog’s bedding while I can hang it out to dry.  I’ve cleaned out my shed ready for when the chap comes to mend the roof next month.  And I’ve re-grouted the bits of the patio which disintegrated over winter.  I’m tired.  Really tired.

So, being as though the weather is so uncharacteristically gorgeous I decided to go “on my jollies” without leaving the house (much).  For 5 days my post is going unopened, my chores are going un-done and I’m cooking the bare minimum.  I am blobbing about reading my book, napping whenever I feel like it, going for long leisurely rides on my scooter with Bertie and generally chilling.

I lasted all of one day before I decided it really wasn’t for me ;-)  The more still and undistracted I am the more I feel every ache, pain, pin, needle, stomach gripe, dizzy spell, itch, spasm and the sheer, unadulterated knackeredness that is my body.  Reminds me of a song by Crowded House which went “everywhere you go, you always take the weather with you……” and everywhere I go, I take my diseases with me.  It sucks.  What I really need is a fortnight off from them – how heavenly would that be?!

Now I’ve searched for that song link on Youtube I’m off to waste another couple of hours playing 80s music and reminiscing about when I used to have a life.  It’s the closest to a holiday nightclub I’m going to get ;-)  Whatever happened to Crowded House?  I have one of their albums somewhere, they made a few absolutely cracking tunes……….

 

 

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!