Pushy, who me?!

In the UK, with our over-stretched, under-staffed and under-resourced NHS, you have to fight for what you need.  Most people don’t.  They sit back thinking Doctors know best and wait for the wheels of the giant health-care system to slowly grind into motion and it could cost them their lives.

As a teenager I was told my back pain was psychosomatic.  At the age of 16 I demanded a second opinion at a specialist spinal hospital and was diagnosed with congenital spinal stenosis and told I needed urgent surgery.  But if I’d just taken the word of the “specialists” at my local hospital I would have ended up in a wheelchair for the rest of my life.  As it is I’ve lived with chronic pain due to their incompetence for 40 years.

In my thirties I was told my scans were all fine and there was no reason for my chronic pain.  I was obviously “just sensitive” and needed to stop being such a wuss.  If it weren’t for my own research and request to see a Rheumatologist versed in Ehlers-Danlos Syndrome I would never have been diagnosed with hEDS.

In my forties I was told by numerous doctors that it was impossible to react to all drugs and nearly all food.  I was just anxious and my ‘episodes’ were ‘panic attacks’.  Again, if it weren’t for my own research and request to see Dr Seneviratne I would never have been diagnosed with MCAD and my ‘panic attacks’, aka anaphylaxis, could have killed me.

7 yeas ago my Mum had half her lung removed due to a tumor.  She had the surgery in Newcastle, but was admitted to our local hospital a week after returning home as she was in agony and very unwell.  She was there for 2 weeks, they didn’t give a toss about her, and her treatment was so poor and she was so ill we thought she’d die.  In desperation I rang the surgeon who had performed her surgery in Newcastle, something you’re not supposed to do, and told him of my concerns.  Luckily he was visiting our local hospital that week and asked me if I’d like him to pop in and check on my Mum.  “Yes please!”  So he did, tactfully suggested to the doctors looking after her that a change in medication might be warranted, and 4 days later my Mum was well enough to come home.

You have to be your own advocate.  It is not easy, however.  The NHS, on the whole, does not like to be told what to do or to be faced with patients who know more than they do which is often the case when it comes to rare diseases.  Doctors can be hugely defensive when faced with a clearly well-informed patient and I have born the brunt of passive-aggressive sarcasm and outright hostility.  I don’t give a shit what they think of me – I’m the one living with my symptoms, not them.

Yesterday morning I had had enough of my Dad’s lack of treatment.  Knowing that Xmas was looming and fuck all was going to get done over the holidays I took a firm grip on his health care.  The local neurologist, after 4 days, had still not rung me back and I was not willing to “leave it with” my GP, as after 36 hours the neurologist hadn’t rung her back either.

From good old Mr Google I had discovered that one of the neurologists at Newcastle, Dr Miller, had a special interest in CIPD and protein neuropathies, so I found his email address on a conference programme and emailed him directly, something frowned upon here in Britain.  I didn’t expect him to mail me back, so in the meantime I again rang my GP to ask her what was happening.

The receptionist said that although the GP was still in the building she was just about to leave for the day (it was 1pm) and in any event she had nothing new to tell me as the neurologist still hadn’t rung her back.  So I said “if the neurologist isn’t going to ring either me or the GP back we need another plan of action then don’t we!” and asked could I leave a message for her to ring me first thing in the morning.  “No” was the reply, “you can only leave a message for a GP if they’re actually on the premises”.  “But she is on the bloody premises!” I shouted down the phone, but was firmly told to ring back in the morning.  I put the phone down on the receptionist before I started issuing her with death threats.

Within 5 minutes the GP called and said that actually the neurologist had rung her back and said that we don’t have the facilities here to treat my Dad and he needed to see the specialist at Newcastle.  Like I’d told her would be the case on Monday!  She said she’d contact the Surgeon and request he urgently refer my Dad to Dr Miller, which she did there and then.

However, when I put the phone down I saw that Dr Miller had emailed me back!  He was very nice, which was a shock as neurologists can often have arrogant egos the size of a small country as I know from bitter experience over the years, and said he’d be happy to see my Dad but didn’t have an appointment available until 17th Jan.  If it were urgent, though, my Dad could be seen in the emergency neuro clinic.

I had no clue how urgent my Dad’s illness is.  All I know is that with early treatment permanent disability from CIDP can be avoided and symptoms actually reversed, but as the illness has been missed for an entire year and my Dad has declined rapidly in the last 3 months maybe it’s too late for treatment now in any event?  Dr Miller asked for a timeline of my Dad’s symptom progression so I emailed that to him late last night.  By 9am this morning he’d already replied that my Dad needs to be seen urgently and he’d passed his details on to the rapid access neurology clinic.  Not half an hour later the rapid access clinic called and my Dad is being seen at 10am on Christmas Eve.  I feel such vindication that my Dad does need urgent help and I wasn’t just being overly dramatic.

If the GP finds out I’ve contacted Dr Miller behind her back she will probably be well pissed, but I don’t care.  If she isn’t going to keep me in the loop I can’t be blamed for exploring other avenues of help and in any event I’ve told her on 3 separate occasions this year that I think my Dad’s kappa paraprotein is involved and that his stenosis isn’t explaining his symptoms and she has dismissed my concerns.  Turns out I was right after all.

Make a fuss.  Chase things up.  Do your own research (with reputable NHS based services) because you have a shed load more time to get clued up than a harassed GP.  Be prepared to nudge doctors in the right direction, especially if your disease is one with which they aren’t familiar.  If it’s needed, put yourself at the top of someone’s work pile.  But be polite, even when you’re telling someone the situation isn’t good enough – doctors are just people, who have lives and worries and stresses of their own.  I seem to have found the knack of being assertive yet still deferential, and if warranted I always thank the doctor involved, often by a little card or if they’ve really gone out of their way to be helpful with a bottle of wine or a box of chocolates.  We all like to be appreciated.

 

Advertisements

No Coincidences

As most of my regular readers will know, in the last 18 months my Dad has gone from going mountain climbing every week to being in a wheelchair.  In the last 6 months he’s also started having hand spasticity and awful vertigo/vomiting episodes and is clearly not well.

A routine blood test a year ago discovered an IgA kappa paraprotein band in his blood.  This can be a sign of either Multiple Myloma (a blood cancer), Smouldering Myeloma (a precursor to Multiple Myeloma) or MGUS (a warning sign for Myeloma which requires monitoring but no treatment).  As the rest of my Dad’s blood work was fine, he was classed as having MGUS despite having no further tests.  IMHO he should really have been referred to Haematology for a bone marrow biopsy to check for Smouldering Myeloma due to his symptoms of dizziness, vomiting, fatigue and nerve issues but wasn’t, a situation I’ve been unhappy about for some time.

An MRI scan in the Spring showed he had stenosis (ie narrowing) in his spinal canal due to bulging discs and he was referred to the Surgeons at Newcastle.  We waited, and waited and waited and eventually 7 months later he saw the Surgeon, who booked him in for surgery on New Year’s Eve but said that his severe symptoms couldn’t be accounted for by the stenosis (which I had been telling every doctor we’ve seen all year!) and referred him for further tests.

So this week he had another MRI scan and nerve conduction tests on his legs, which showed he had something called C.I.D.P. (Chronic Inflammatory Demylinating Polyneuropathy).  His immune system is basically eating the myelin sheath around his nerves 😦  His surgery was cancelled as the Surgeon said his symptoms were basically all coming from the CIDP, which can be associated with kappa paraproteins in the blood – no shit Sherlock.

CIDP used to be called Chronic Guillain Barre Syndrome.  GBS is a rare autoimmune disease where, often after an infection, the immune system starts attacking the nervous system.  And that’s where the weirdness starts.  My Mum developed acute Guillain Barre Syndrome last August.  My Dad had a slight cold which he fought off no problem.  He passed it to my Mum who, with severe heart and lung disease, became very ill indeed and was eventually diagnosed with Guillain Barre and rushed to hospital.  But it was after this that the kappa paraprotein was found in my Dad’s blood and he started having problems walking.

Guillain Barre Syndrome is an autoimmune disease.  It is not infectious or contagious.  However both my parents have developed this rare illness after the same bug, the ony difference being my Mum developed acute GBS and my Dad chronic GBS.  No-one is ever going to convince me that this is mere coincidence.

I’m so grateful we finally have a diagnosis for my Dad but I’m tearing my hair out trying to get urgent treatment for him.  The Surgeon washed his hands, saying he needed to see a neurologist.  He saw a neurologist last Monday (before the CIDP diagnosis) who at least referred him to Haemaology to check for Smouldering Myeloma, so I left a message for him to ring me urgently regarding my Dad’s new diagnosis……..four days ago and he hasn’t returned my call.  I rang his GP at 8.30am yesterday morning and she did ring me back saying she’d sort something out………..and she didn’t call me back either.  FFS!  My Dad is getting worse by the day and has been left untreated for nearly 18 months now.  He urgently needs steroids and an IV infusion of gammaglobulins to halt the progression of the CIDP but it’s the week before Xmas and no-one seems to give a shit.  I am so stressed :-/  If I’ve heard nothing from the GP by lunchtime I’ll ring and exert my legal right for him to be treated by whomever I like, and it will be James Miller a neurologist at the RVI in Newcastle who specializes in CIDP and protein neuropathies.  I’ve no idea if he’s the right person to see but one thing’s for sure, there won’t be a CIDP/protein neuropathy specialist at my little local hospital will there?  Wish me luck.

 

Weekly roundup

As you know from my previous post, Monday I took my Dad to see the neurologist about his leg weakness, hand spasticity and dizzy/vomiting spells.  The Consultant thinks none of it is down to his spinal stenosis and is more likely to be down to his MGUS (a precursor to blood cancer) and has referred him to Haematology.  My Dad doesn’t understand any of what’s going on, has no clue what large fibre neuropathy is and just thinks he’s going to have his decompression surgery and be totally back to normal in 3 months.  He’s going to be devastated when that doesn’t happen 😦 The Hospital rang this week to say he’s booked in for his surgery on New Year’s Eve!  I just hope the Surgeon hasn’t been on the cooking sherry over Christmas!

I have been feeling really rough all week.  My sodding periods are making me feel awful – exhausted, very muzzy headed and both my back and endometriosis pain is off the charts 😦  However, my bestie drove through on Tuesday and we went out for lunch, which was lovely and helped take my mind off everything.

Weds was the last Camera Club meeting of this year.  We had a quiz and a little buffet and I had a fun night, though I still miss my friend Linda who left.  We now have a break for 3 weeks over Christmas and although I’ll miss the company I won’t miss coming home at 10.15pm in the dark, howling winds and sleet.

Speaking of Camera Clubs though, if you remember I was guest speaker at a Scottish Club in October and must have done OK as I’ve been asked to go back again next Season!  I’m not sure I have enough new material for another 2 hour talk, so have said I’ll think about it and get back to them.

Friday I collected my car from the body shop after my little prang.  The alloy wheel is still all scuffed though, so now I’m going to have to ring the insurers and asked why they didn’t request that be put right.  It’s totally pissing me off because my car is 5 years old and I’d half agreed to trade it in for a newer one until this happened, so now I can’t do anything until it’s all done and the paperwork is sorted.  If the car I have my eye on is sold in the meantime I’ll be well hacked off.

Today my Dad is going to Newcastle for yet another MRI scan, this time on his upper back and neck to see if there is any further stenosis or lesions on his bones.  I’m making my brother take him though being as though it’s the weekend and he’s not at work – I was in agony for a week last time I did the 180 mile drive.  While he’s away my Mum has asked me to take her to all our relatives graves to lay Christmas wreaths as neither she nor my Dad can bend now to do it.

I received a Christmas card and letter from one of my friends with M.E. this week.  We got ill at roughly the same time, the only difference being my friend was a teenager.  She is now 40 and has been virtually bedridden for over 2 decades.  She is still unable to stand for more than a minute without passing out and is currently lying, yet again, in a dark room and without sound otherwise she has a seizure.  My heart broke for her, yet I was selfishly thankful I was no longer in that position myself.  I have no idea how she’s kept her sanity all these years or the will to keep fighting.  Patients with severe M.E. are the strongest people I’ve ever met – unless you’ve been there you have no idea the tortures of hell this disease can inflict and the strength it takes just to get through the next minute let alone a whole day/week/month/year/decade.  People ask me how I can remain so cheerful and bubbly despite my health and other issues and the reason is that I am so grateful to no longer have severe M.E. and to actually have a life, any life.  I can still do stuff, despite my symptoms, when I couldn’t do anything when I was severely ill with M.E., and for that I am grateful every day of my life.

MGUS and the need to listen

Before I begin this post, I just want to give a shout out to a new blog on M.E. called ‘Words from a Hidden World’.  The blog is written by Naomi Whittingham who has suffered the tortures of hell, aka severe M.E., for decades.  I don’t know Naomi personally, but we have several friends in common and I’ve read many of her stunningly well written articles in the press and elsewhere over the years.  Despite huge cost to her health Naomi has tirelessly tried to educate on the realities of severe M.E., as this post relaying a talk she gave to Doctors and Clinicians demonstrates, and my blog post today was inspired by Naomi’s advice on how important it is for Doctors to listen to their patients.  I hope you’ll pay her brand new blog a visit – scroll right down to the bottom of the page to subscribe.


On to the topic of today’s blog post: the importance of listening and why Doctors appear to be so shit at it.

18 months ago my Dad had some routine blood tests and something called a kappa paratrotein band was detected that shouldn’t be there.  I’d never heard of kappa paratroteins so did some digging on Google and discovered they are implicated in three diseases: MGUS (monoclonal gammopathy of undetermined significance), SM (Smouldering Myeloma) and MM (Multiple Myeloma).

MGUS is rare but not massively uncommon, especially in older men.  There are usually no symptoms and the patient happily lives with the condition.  However, it does have to be monitored because between 1-3% of patients with MGUS each year go on to develop either Smouldering Myeloma or Multiple Myeloma, ie blood cancer.  If you go on the myeloma forums online, nearly everyone with MGUS is referred to a Haematologist to be checked for myeloma and if they are clear they can be monitored every 3-6 months by their GP.  Only my Dad has never seen a Haematologist or been checked for myeloma :-/

At around the same time as the MGUS was detected my previously fit and healthy Dad started having back and leg problems and to cut a very long story short 18 months later is now using a wheelchair because he can barely walk.  He had an MRI on his lower spine which showed stenosis and he’s currently waiting for surgery on his back.  However, he’s been having other issues like bilateral spasticity in his hands and horrendous vertigo and vomiting episodes which were initially a couple of months apart and are now a couple of weeks apart.  Having read about myeloma, four of the symptoms are:

  • Dizziness
  • Vomiting
  • Fatigue
  • Leg weakness/Neuropathy

and my Dad has all four.  I’ve repeatedly asked his GP if his MGUS could be the cause but she’s poo poohd the idea, saying his hand spasticity was just cramp, his vertigo and vomiting is migraine (despite my Dad being 79 and never having so much as a headache in his life before let alone a propensity to migraines) and his leg weakness is all coming from his back problem.  But I just knew in my heart that the MGUS was involved.  No-one was listening to me though.

In November my Dad was finally seen by the Surgeon who will perform his back surgery and he immediately said that my Dad’s stenosis wasn’t bad enough for my Dad to be so ill he was in a wheelchair.  He strongly suspects neuropathy………caused by the MGUS.  Up to 30% of patients with paraproteins in the blood develop neuropathy because it de-myelates the nerves.  So he’s ordered nerve conduction tests which my Dad is having on Monday.

The other thing paraproteins can do is cause bony growths, particularly on the spine, so the surgeon has also ordered an upper MRI scan of my Dad’s back to see if such a growth (ie lesion) has occurred and may be pressing on nerves leading to his head and causing the vomiting episodes.

Here’s the thing though.  If the MGUS has, over 18 months, caused neuropathy it is irreversible and my Dad will be in a wheelchair for the rest of his life.  But if the GP had listened to me and taken the MGUS into account sooner my Dad could have started on drugs which may have helped and he might not be in the state he’s in now.   And even if the GP didn’t want to listen to me my Dad should have been referred for a bone marrow biopsy to make sure he didn’t have Smouldering Myeloma. To say I’m livid is the understatement of the century.

Why do Doctors become so blinkered?  Why don’t they listen to clearly intelligent, well informed patients who know themselves and their loved ones so much better than anyone else on the planet?  Many of my Dad’s symptoms didn’t fit the stenosis diagnosis but his GP refused to consider there might be something else wrong, even in the face of blood tests which clearly showed he is at risk of myeloma and his symptoms actually fitted a myeloma diagnosis.  I swear if he does have cancer I’ll sodding well sue the GP.  Unluckily for her I wrote her a letter in April outlining my concerns about his kappa paraprotein level and the symptoms he had, so I have proof that I raised concerns which were ignored.

My poor Dad thinks he’s going to have a back operation and 3 months later will be on his feet and tickety boo.  No-one has the heart to tell him that won’t be the case and he is now probably permanently disabled – I dread to think what that will do to his mental health.  And I’m trying not to lie awake at night wondering how I will manage from now on with both parents in wheelchairs and hardly able to do a thing from themselves when I am also chronically ill and struggle to look after myself let alone two other people.  I’ll keep you posted as to how he gets on.

 

Mast Cells & M.E.

Leading Doctors in the M.E. field are slowly coming to the realization that Mast Cell Activation Syndrome (MCAS) is common in their patients, with some finding issues with mast cells in more than 60% of the people they test (see this post by my friend and fellow blogger over at Rag & Bone Shop of the Heart).

Ever since I first learned about MCAS I knew, for sure, it was implicated in M.E. as I explain in my Canary post.  In particular it explains why POTS/orthostatic intolerance is almost universal in M.E. patients, why reactions to foods, drugs and the environment are so prevalent and why nothing is ever found on testing, despite some patients being profoundly ill (no-one has been testing for mast cell mediators!).

Where I disagree with most clinicians looking at the link between mast cell activation and M.E. is that doctors think it only applies to a sub-set of patients, while I think it is implicated in the disease in all patients.

I am convinced I was born with MCAS.  I think it can either be congenital (in my case it seems to be linked to my hEDS) or acquired later in life due to an immune event like a virus, vaccination or surgery.  I have photos of myself as a baby flushing my cute little face off and have had dermographism ever since I can remember, but I had no clue I had MCAS until I was in my mid forties because it wasn’t a problem until the peri-menopause set it off.  My point being it can go undetected in the majority of patients until something happens to rocket it into orbit.

For a decade I was life-threateningly ill with M.E., yet I could eat whatever I liked, take most medications without a problem, didn’t have hives, asthma, itchy skin or any of the other symptoms associated with MCAS.  But that didn’t mean it wasn’t there, lurking.

Looking back I’d flushed all my life (I didn’t know it was flushing, I had no idea why I went bright red all the time!), I could skin write and I’d been unable to drink alcohol without my face swelling or passing out since developing M.E (which I now know is grade III anaphylaxis), but other than that there were no obvious signs of mast cell mediator release.

In my mid thirties, after having M.E. for ten years, I started to become allergic to medications, many of which like paracetomol (tylenol) and travel sickness tablets I’d taken all my life.  I developed a tight chest around certain smells and the print ink off newspapers made me wheezy.  I also developed severe migraines almost out of the blue, hay fever each spring which I’d never had before in my life and started getting itchy lumps on my bum which I had no idea were hives.  I also had what doctors called either “A-typical seizures” if they believed in M.E., or “panic attacks” if they didn’t believe in M.E., but which I now know was anaphylaxis.

In my mid forties I started peri-menopause and all hell broke loose virtually overnight.  It was then I began reacting to all medications and nearly every food I put in my mouth, to the point where I honestly believed I’d die.  I’d had M.E. for 18 years at this point though and although there had been hints all along if I’d known to look for them, my mast cells hadn’t gone berserk enough for me to be really troubled by them or to link them to my M.E. in any way.

All my friends with M.E., without exception, have an allergy of some kind and the more severely affected by M.E. they are the more allergic they seem to be.  My best mate has never been severely affected, yet still has asthma, hay fever, POTS and auto-immune diseases (confirmed Coeliac in her thirties despite having no symptoms whatsoever at the time and confirmed Palindromic Rheumatism in her forties after suddenly developing swelling joints and skin problems).  It’s way too much of a coincidence that nearly all long term M.E. patients have, or develop, allergic reactions, many have auto-immune diseases and all have some kind of orthostatic intolerance.  There has to be some kind of missing link and, for me, that’s misbehaving mast cells.

It’s the only thing which fits.  It’s the only thing which causes seemingly unrelated systemic symptoms like insomnia, back pain, diarrhea, migraine, food allergies, breathing problems, fatigue, that tired-but-wired feeling, nausea, inflammation and on and on and on.  And of course no-one has been testing for it, which is why no-one has been able to find a test for M.E.

So if mast cells underly M.E. why don’t all patients tested have evidence of mediator release?  I’m just a patient and no kind of expert but I do have a couple of theories:

  • Because there is no test for M.E. lost of people are diagnosed with the disease that don’t actually have it.   I know this because of all the ‘cured’ stories I read in the press from people who clearly didn’t have M.E. in the first place, yet were diagnosed by GPs because the disease has become a dumping ground for anyone with unexplained fatigue.
  • Despite being seriously ill, having anaphylaxis every time I ate and having a bum covered in hives my histamine test when I saw Dr Seneviratne was still within the normal range!  Very high but not quite high enough to be considered abnormal.  I didn’t have any other tests, like leukotrienes and chromoglanin A, done because five years ago these weren’t available in the UK and I was only diagnosed with ‘probable’ MCAS based on my history and symptoms.  So it doesn’t take a rocket scientist to work out that the current mediator release tests simply aren’t sophisticated enough.  They’re looking for acute mediator release, not the chronic mediator release experienced by MCAS sufferers.  Maybe we need to re-think what the maximum levels are, or maybe we need to repeat test weekly over a period of say a month or two?  I’d love to be tested while I’m having my period because my reactions are so much worse then.

Being one of the first people to talk about the link between mast cells and M.E. I am delighted that the medical profession finally seem to be catching on and that M.E. patients in America at least are now being more routinely tested for MCAS.  We really need a large scale study of severely affected patients though, and much more sophisticated tests to check for chronic mediator release, but at least we finally seem to be making a start.  “The journey of a thousand miles begins with one step”.

Weekly roundup

Apologies if this post makes no sense, but I have a brain that feels like it’s been involved in a car accident and I think I’m starting with a hormone induced migraine :-/

The reason I am feeling like road kill is that I made an epic 600 mile journey to London on Friday to see one of my photographs in its very first print Exhibition.  From over 40,000 people I was chosen by the Photographic Alliance of Great Britain, along with 59 others from across the UK, as one of this year’s best amateur photographers and my work will be shown in a Gallery in the Capital for the next two weeks.  Holy Shit Bat Man!!!!!

My lovely friend John from my Camera Club offered to accompany me (for which I was hugely grateful, as the thought of going alone was daunting) and we caught the 8am train from Cumbria, getting into London at 11.10am.  We then caught the tube to Southbank, where we stopped off for lunch at a nice cafe, before making our way to the Gallery for the private opening ceremony which lasted til 4pm.  Getting back to the train station during rush hour on a Friday was an experience (!) but we made it and were soon winging our way back up north at the end of a brilliant, if ridiculously tiring and physically challenging, day.

At 9pm home was in sight when the train manager came over the tannoy to say that high winds were forcing him to apply a speed restriction to the train, and instead of travelling at 125mph we were having to crawl along at 50mph, causing a delay of over an hour.  My back already felt like it was going to snap in two and there was no way I could sit for another 90 minutes, so John had to move seats and I had to take my boots off and lie down as best I could across two tiny, hard chairs with my feet dangling in the aisle annoying everyone who wanted to get past!  We eventually got back home at 10.10pm, when I had to collect my dog from my parents’ then drive the 20 minutes home in lashing rain and howling winds.  I’ve never been so glad to get in my pjs and into bed in my entire life!  However, I DID IT, yayyy for me 😀  Of course, I will be suffering the consequences for days, if not weeks, but who cares right?!

On to other news.  I am currently driving a courtesy car as mine is in the body shop being re-sprayed after my little prang last month.  The courtesy car is geared though (stick shift), not automatic like mine, and my legs are protesting already!

My Dad was really poorly on Wednesday evening with one of his ‘dizzy/vomiting’ episodes.  The poor man projectile vomited for nearly 2 hours and during these attacks he literally goes off his legs and can’t walk.  Thank God we are seeing the Neurophysiologist on Monday who I am hoping can shed some light on what is going on.  We still don’t have a date for his back surgery though, so it’s looking unlikely it will happen before Xmas.  Big sigh.

Friday was my last big event in a year which has been brilliant, but stupidly over-busy, and I am looking forward to a much needed rest and the opportunity to recharge my very flat batteries.  Famous last words 😉

 

 

 

 

Mr Fix-It

For the entire quarter of a century I’ve been ill people who know nothing about me or my diseases have been trying to fix me.  I know they mean well, I truly do, but why anyone with no medical qualifications thinks they know more about my health than I do baffles me and how they think they have the right to offer me unsolicited advice baffles me even more.  Would I tell a total stranger online, or some family member I never see from one year to the next, how to manage their finances, parent their kids or improve their marriage when I know nothing about what’s really going on, the issues are deeply personal and they didn’t ask for my advice in the first place?  No.  Yet everyone and his dog thinks they can tell me how to manage my health.  It irritates the life out of me.  Scrap that, I feel livid just thinking about the decades of well-meaning, but ultimately intrusive and insulting, comments I’ve had to endure.

The conversations with people I actually know usually start something like this:
“Hi Jak, how are you today?”
“Oh, fair to middling” (which is a Cumbrian term for ‘crap’ – I refuse to say fine when I am clearly not, and never will be, fine).
“Oh, that’s  a shame.  What’s up?”
I am not going to list the dozen symptoms that are currently troubling me the most, or go into detail about my bowel habits, menopause or the fact I have itchy hives on my arse which are personal and no-one’s fucking business but mine, so I usually reply “Just having a pain flare.”
“Have you not tried some painkillers?”
Oh my God why I haven’t I thought of that!  Said no chronic pain sufferer ever.  Seriously, I have no clue what I’m supposed to say to that.  I’ve tried various responses, which all lead further down the path of well-meaning, but ultimately insulting, advice and only serve to wind me up like a clock.  For example:
“I’m allergic.”
“Really?!   Surely there’s something you can take?”
“No.”
“Well what about things like Gabapentin/Amitriptyline/insert-any-non-analgestic-drug-of-your-choice-here?  My friend with ME is on that and it’s really helpful.”
It’s at this stage in the intrusive conversation when I’m hormonal, have barely slept for 10 days and am so fed up I could cry that I want to punch them really hard on the nose.

Or I get the whole “have you thought about acupuncture/a gluten free diet/prayer/insert-the-thing-which-cured-you-or-your-friend-here?” and then have to justify why I have, or haven’t.  Like it’s anyone’s fucking business.  Do I ask you if you’ve tried debt counselling or been on Mum’s Net for advice on controlling your unruly teenager?  No I do not, because your private life is none of my Goddamn business and you are a grown adult capable of running your own life.

Then, at the end of the conversation when I’ve had to evade all their well-meaning but unasked for advice the other person gets a bit narky with me, like I’m deliberately letting myself suffer when there is clearly help out there if only I’d try it.  When they’ve had over two dozen potentially life threatening anaphylactic reactions to everything from herbal tea to B12 supplements and have PTSD at the mere thought of trying a new fruit let alone a powerful drug like Gabapentin, then they can tell me what I should and shouldn’t be trying.  Until then, they  need to shut the hell up.

If I want someone’s advice, I will ask for it.  Until then, I am allowed to say I’m not well without you trying to fix me.

The best response is the one my lovely friend John at Camera Club uses and it’s this:
“Hi Jak, how are you today?”
“Oh, fair to middling”
“I’m sorry to hear that.  I hope you’re back to your normal again soon.  Let me know if there’s anything I can do to help” (and he actually means that, unlike most people who say it and pray you never ask for help).
“Thanks, me too.”  And I walk away from the conversation knowing he both cares and gets my situation.  Note he doesn’t say I hope you feel better soon, because that’s the worst thing you can say to someone who is chronically ill with no hope of ever being well.

I’m fed up of people trying to fix me.  I don’t care that it’s well-meaning.  It’s intrusive and patronizing.  If I ever want someone’s advice on my health I will ask for it, but it’s unlikely I will be asking some stranger off the internet or some random family member.  Call me weird, but it’s much more likely I will be asking a medically qualified Consultant who specializes in at least one of my rare and complex diseases!