Tag Archives: chronic illness

One In A Million

Overnight my blog received its 1 millionth visitor.  It’s gobsmacking to me.  Seriously gobsmacking.  Here I am in the middle of nowhere, surrounded by sheep and farmers, spending 17 hours of every day in bed feeling like road kill and over a million people have read something I’ve written, including someone from Vatican City and one of the world’s leading MCAD doctors.  Mind-seriously-blown.

I started my blog because I felt like I was the only person in the world to be diagnosed with not only M.E., but also hEDS, HIT and MCAD.  I had no clue there were thousands of other disease-triad sufferers out there and finding you all has helped me feel less alone.  And there have been many times that I have felt utterly, utterly alone not least because I’ve lived on my own since I developed ME back in 1994 and have never had anyone to care for me no matter how sick I’ve ever been.

My blog has always been a bit like an online diary – a place where I could offload because in real life I had no-one to offload to.   I include information on my diseases I’ve found along the way which I hope you’ve all found useful, but in essence my blog is written for me.  The fact that anyone ever bothers to read about my shitty life and my even shittier illnesses is simply the icing on the cake 🙂

I know I’m not everyone’s cup of tea.  I loathe when people come on my blog and tell me I should be doing this, or I should be doing that – unless you have access to my medical records and are menopausal, 51, have M.E., HIT, MCAD, hEDS, Endometriosis, Adenomyosis, Polycystic ovaries and severe migraine disorder for over a quarter of a century you and I are not the same and you have no clue what I should, or should not, be taking, eating or doing.  So I know I get tetchy with some of my visitors but that’s because they’re giving me advice that I absolutely did not ask for.

It’s also been levelled at me that I don’t like anyone to disagree with me.  Quite correct.  It’s like reading someone’s diary and disagreeing with their thoughts because they’re not the thoughts that you have.  I can think and feel any fucking way I like and just because it’s not how someone else might think and feel doesn’t make it wrong.  I wish more people got that and gave each other space to express their own unique and individual opinions and thoughts without feeling the need to constantly challenge them with a “yes, but……”.  These days, if someone writes a comment that starts off evenly remotely negative I simply don’t read it.

My blog has evolved just as I have evolved.  My knowledge has changed and grown over time and I think differently about many things in 2019 than I did back in 2013 when I was newly diagnosed.  I don’t pretend to know everything about everything.  I know enough to manage my diseases and that’s all.  Having said that, I’ve survived meningitis, cheated death twice, got back on my feet after being bedridden for a decade, fought for my hEDS and MCAD diagnoses when they were relatively unknown illnesses, survived countless anaphylaxis attacks and am fit enough to do a hobby I love, to live independently and to occasionally walk my lovely little dog – and all without any knowledge of genetic mutations and methylation cycles not to mention eating gluten, sugar and dairy every day of my life alongside Pringles, Starburst and a few gallons of tea 😉   However incorrectly some people think I’m living my life I’m obviously doing something right, for me at any rate.

Blogging so openly and publicly about your life is not for the faint hearted.  You make yourself vulnerable to spammers, stalkers, weirdos, the angry, the depressed, the dismissive, the judgemental, the just plain nosey and the downright bloody rude.  But in return you also open your life to friendship, support, knowledge, encouragement, understanding and laughter – and it’s that which keeps me going 🙂

Thanks to you all for caring about me and my struggle.  For sharing in my journey and for sharing yours with me.  You’re one in a million and I am thankful for you.

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Uninspiring

Although my upcoming talk this week is on photography I’m using the platform to make some subtle points about disability.   My neighbour used to be a keen mountaineer, only he got stuck up a mountain in a blizzard for 24 hours and lost all his fingers, both thumbs and part of his nose to frostbite and had to have his leg amputated as it was badly crushed.  He is the poster child of someone who is disabled.  I, OTOH, will look totally fit and well as I stand before my audience yet the ‘disabled’ guy runs 3 miles a night on his artificial leg and still goes mountaineering while I struggle some days to get dressed and only manage a shower once a week.

I asked if I could take a photo of my neighbour for my talk and he agreed.  The resulting image was put on facebook and immediately I received comments on how brave and inspiring he is because of all he achieves despite the challenges his disability poses.  I don’t disagree.  Despite having no fingers and only one leg he runs a thriving upholstery business, has 4 children and has so far been on three holidays this year………while I lie in my bed skint and alone having not had a holiday since 1996 because I’m way too sick to travel.

I’ll never be called inspiring or brave.  Not that I would want to be called brave simply for enduring the shitty hand I’ve been dealt and I know it also gets on disabled people’s nerves – it’s not like we’ve deliberately chosen our lives like someone chooses to run into a burning building – but the point remains that there is acknowledgement of overcoming adversity with disabilities which is absent when one is chronically, and more importantly untreatably, ill. It is, of course, a different kettle of fish when it comes to The Big C because cancer patients are routinely thought of as ‘brave’ and ‘inspiring’ and when they’re cured by modern medicine they are deemed to have ‘won the battle’, words which are all too often missing when describing the chronically ill.

If healthy people acknowledge me at all it’s as lazy, weird, anti-social, weak or a scrounger and the words “you poor thing” have actually been said to my face.  The strength it takes to live a life of chronic illness is never acknowledged let alone applauded.

I may not have four children (who, btw, live full time with their mother) but I do have a dog and two elderly, sick parents to look after.  I may not climb mountains but I create with my photography.  I blog (nearly 1 million visitors!), I volunteer, I teach…………yet he is ‘brave’ and ‘inspiring’ while I am ‘weird’, ‘lazy’ and ‘a poor thing’.   Why is that I wonder?

 

The Need To Create

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

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

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

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

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

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

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

Avoiding The Pit

I am prone to clinical depression.  I had a chaotic childhood which predisposed me to mental health problems.  I have mast cell disease which definitely affects my moods and depression runs in my maternal family, in my Aunt’s case so severely she had electric shock therapy (which BTW doesn’t work).  My Mum has suffered from depression my whole life and I have three female cousins who turned 50 this year and all have suffered from depression for as long as I can remember, albeit at various levels.

I was clinically depressed during my teenage years and half-heartedly attempted to take an overdose.  I was definitely depressed when I got divorced, though it wasn’t clinical depression.  And I have had one serious depressive (actually more bipolar) episode since I became ill, though I think that was mast cell related because it was totally out of my control and felt more biochemical than emotional.  So when I talk about depression I do have some experience of the condition.

But I am not a victim of depression.  I bloody well refuse to be.  I have watched my Mum suffer from the disease my whole life and do absolutely nothing about it.  Being miserable seems to be a familiar comfort blanket and certainly not something she seems to want to change.  I simply don’t get that.  I only have one life and I’m damned if I’m spending it moping around and bringing everyone around me down.  I’m acutely aware I have a tendency towards depression and am as proactive about that as I am about my physical health.

So how do I go about avoiding the pit of depression?

  • Acceptance.  We can’t change the past and, in my case, I can’t change the present either – I’m never going to be healthy again a day in my life and there is nothing I can do about that.  So I accept it just like I accept the weather outside my window and I live as full a life as I can despite it.  When I was bedridden and suffering the tortures of hell it was impossible to be “happy” but I learned to be accepting, which gave me peace.
  • Purpose.  We all need a purpose in life or there’s no reason to get out of bed in the morning, especially when that involves pain and illness.  My little rescue dog gives me that purpose.  Regardless how I’m feeling he’s awake at 6am and demanding to be fed.  He then wants a tummy rub, his morning walk (paid for by me), his feet wiped, his Dentastix for lunch, another walk, more feet wiping, his tea and a bedtime cuddle.  My reward for all that hard work (and, oh boy, is it hard work) is completely unconditional love and a furry bundle that makes me smile every day of my life.
  • Passion.  I honestly don’t know how I’d get through without my photography.  It gives me a goal, pleasure, forces me to get out in the world, mingle with other people and forget about my health for an hour or two.  The editing side of photography is something I can do in bed, picking it up and putting it down again when my health and energy wax and wane.  I simply love it.
  • Distraction.  Due to all the resting I have to do my mind has a lot of time to think and not all my thoughts are helpful, so I have to find ways of switching them off.  I watch far too much TV, even having it on in the background when I’m cooking or doing chores, so that my brain is distracted from dwelling on the negative.  I listen to loads of talking books which I download free from the Library.  I have them on when I’m out with Bertie, driving the car or lying in the bath – in fact any time I am relaxed, because I don’t want to give my mind too much space to think about stuff which only makes me sad, angry or frustrated.  I even listen to a talking book as I drop off to sleep or wake in the night, so that my brain has something to focus on other than how crap I feel.
  • Gratitude.  I know this is an Oprah cliché but for me if I start focusing on all the things I don’t have or can’t do my mood nosedives, so when I find that happening I make a conscious choice to be grateful instead.  I had my Christmas groceries delivered yesterday and as I was huffing and puffing and moaning to myself about having to put it all away (my back, neck and arm are still really painful) I stopped in my tracks, called myself an ungrateful cow and started thinking instead about how lucky I was to have all this beautiful food and a clean, safe home in which to eat it.  And then I spent a cosy hour on the couch stuffing my face with Pringles and watching Eastenders.  Bliss, although my waistline will never forgive me 😉
  • Setting myself up for success.  My whole life I’ve attracted people with issues who want to offload their crap on to me.  Which is fine – we all have problems now and again and need someone who can empathise, but I began to realize that these people’s problems were never resolved. They were emotional vampires, sucking the very life out of me in order to raise themselves up and they had to go.  Which is why I feel so trapped in the situation with my Mum because if she were anyone else in the world I would have dumped her ages ago.  I only want to be around people who make me feel joyful, happy, supported, encouraged and understood and the relationship has to be a two way street – gone are the days where my friends and  family do all the taking and none of the giving.

I also avoid negative information.  I catch the news headlines so that I know basically what’s happening in the world and then I switch channels.  There is nothing whatsoever that I can do about the situation in Syria, Brexit or the fact that 6 people were killed on the motorway this morning and hearing about it can make me feel emotional, so I don’t listen.  I don’t embark in heated discussions online because I find it stressful and you can guarantee someone will lose their cool and start being nasty which I don’t need.  I try my level best not to take on the weight of the world because my shoulders simply aren’t wide enough.

  • I put in the work.  I’m sure some people are born with a sunny disposition and nothing gets them down but I sure as hell wasn’t.  For me, happiness takes work and it’s something I aim for each and every day.  If you’re predisposed towards depression you have to make an effort to not be depressed.  And it is an effort, especially when you’re already feeling ill and exhausted.  But the good news is the more you practice happiness the easier it becomes, whatever life chucks your way.

Friendships

Today I read another wonderful post by Lindsay over at Musings of a Dysautonomiac, a fellow blogger who has POTS and MCAS.   I ‘met’ Linds through my blog and am now privileged to class her as a friend, not in any kind of traditional way because we live in different countries and are online at opposite ends of the day, but in my heart.  I look forward to her posts and Facebook messages, rally for her and struggle with her – all without saying a word because I don’t have the energy but I hope she knows that I see her and care about her life.

It’s a good job I make new friends every now and again because I’ve lost all my pre-illness mates.  Every single one of them.  Sometimes I’ve let the relationship go and sometimes they have but the end result is the same, and no matter who the instigator is saying goodbye to a relationship you once held dear is painful.

Like Lindsay, I traditionally got along with men better than women.  Having said that, I always had one or two very close girl friends but they were often people who were in some way broken or needy and, being a caring person, I often seemed to fall into the parental role in my friendships which of course turned to crap when I got ill because I could barely take care of myself let alone anyone else.   I’m also not a girlie girl and just find the banter and straight-talking attitude of blokes easier to handle than the complex subtleties of women which I often find bewildering.  But then I got sick and realized that, on the whole, men don’t do illness.  They make rubbish carers and simply don’t know how to react around sick people, especially a sick person who used to be feisty and independent and who is now…………well, still feisty but more needy 😉

After all these years I’m not even sure it’s possible for me to have good friendships with healthy people.  They just don’t get it.  Have no clue what my life is like or the struggles I face every day.  And I’ve found I lose patience with their whining over inconsequential shite and am frustrated by how little they value their lives – their healthy, active, vibrant, full of possibilities, lives.  And don’t get me started on how much they moan when they have a cold!

Occasionally, though, healthy people surprise me and there are two or three people at my Camera Club who do make an effort to ask the question “how can I make it easier for you to do x, y or z” and to include me in activities, for which I am hugely grateful.  It’s a lot of pressure though.  Here they are making special efforts to arrange outings and activities which I can take part in, but then I feel like I absolutely must take part because of all the trouble they’ve gone to.  So what happens if, on the day, I wake with a migraine and can’t move, or have anaphylaxis and end up in bed puking?  I let everyone down and although they try not be annoyed I know they are because, after all, they’ve gone to all that trouble just for me and the least I can do is show up.

Having close friendships with other sick people, however, is also challenging.  Neither of you has any energy and trying to find a day to meet up when you’re both well enough can be a struggle.  It’s vitally important you don’t just have illness in common too, otherwise all you do when you get together is talk about being sick which would be monumentally depressing.  I met my now best mate at an M.E. conference about 15 years ago and neither of us are particularly girlie girls.  We’re both creative and practical, like nature, gardening, being outdoors and have renovated houses, so have stuff besides our shared disease in common though I’ll never understand her passion for mines 😉  I honestly think I’d lose my mind if I didn’t have her in my life – no pressure then K!

Friendships when you’re chronically ill are tricky.  I’d love more friends but realistically know I don’t have the energy, especially if the friend is well and expects to meet up regularly or do physical activities.   Friendships with other sick people are easier in some ways yet harder in others – when you both lack energy there is a tendency to not communicate for months on end which, while understandable, is lonely.  And while online friendships are great there’s no substitute for meeting up in real life and actually being with another person.

If you’re lucky enough to find someone you click with, who shares your sense of humour, your interests and who gets you and your disease it’s priceless.  I’ve told my best mate that, should she ever threaten to break up with me, I am chaining her up in my shed so’s she can’t escape 😀  To all my online friends, whose caring, sharing, humour and empathy keep me going every day of my life “THANK YOU!” for being there and for being you.  You make an otherwise unbearable life less lonely.

Disease Denial

I’d guess that 100% of us are in some form of denial when we’re first diagnosed with a chronic illness.  Obviously we know we’re sick and for me personally all three of my diagnoses were a huge relief because finally I could put a name to my symptoms and stick my tongue out at all the doctors who’d told me there was nothing physically wrong, but there was still a massive amount of rejection of the fact that I would never get better and my life had changed forever.

When we’re first diagnosed we go online and read about all the success stories.  People who’ve had dry needling and physio and have gone from needing a body cast and a wheelchair to running the London Marathon and we think ‘yep, that’ll be me’.  Only it usually isn’t, especially for those of us who are diagnosed with hEDS in our middle or later years and who have already had decades of untreated trauma to our joints and ligaments.

In the case of M.E. the denial can be particularly strong.  The internet is full of people who have been ‘cured’ and we don’t twig that they never had M.E. in the first place because it’s a disease with no test and widespread symptoms which can be mistaken for scores of other illnesses.  Even my Doctors told me I’d soon be better because “most people make a full recovery within two years” which is probably the biggest fib I’ve ever been told.

I went online in the early years of M.E. and read about people recovering after ice baths, gluten-free diets, hyperbaric oxygen, bee propollis, lymphatic drainage, Ampligen and 2000 other treatments and thought “right, I’ll try every single one cos I’m 26 years old and I need my goddamn life back”.  So my parents spent in excess of £20,000 on everything from reflexology to experimental electrical stimulation and it made not one iota of difference.

People with M.E. can, and occasionally do, improve but from my years of experience of the disease I’ve never come across anyone yet who’s made a sustained improvement because of some weird or wacky pill or therapy.  Nope, it’s been the same thing in 99% of cases and a recent story on the ME Association’s facebook page proves the point.  For most people, any kind of recovery includes the following:

  • Rest
  • Good balanced diet, with plenty of antioxidents
  • Avoiding stress
  • Drugs to help with sleep and pain
  • Pacing
  • Gradually increasing activities over a number of years (sadly not days or months).

It’s that simple, yet so incredibly difficult hardly anyone achieves it and sometimes despite doing all the right things no improvement is seen.  I especially wonder if it’s even remotely possible to achieve improvement if you have kids because there’s no way on earth of having a stable routine every day, or getting the rest and sleep you need, when you have a family.  And it’s absolutely not do-able if you continue to work.  That’s hard to hear isn’t it?  And even harder to accept.

I know people with M.E. who have been ill for two decades yet are still in denial.  They’re stuck in the grief and pity stage and haven’t moved on to the acceptance stage.  They’re constantly online expressing amazement that their symptoms wax and wane or are worse after activity yet still won’t change their lifestyles to allow their symptoms to stabilize.  Asking their friends to pray for them or send them positive vibes, frantically still trying to find peace.  It makes me so sad.

I can tell my friends who’ve reached acceptance because they rarely mention their disease(s).  They talk about their pets, or books, or telly programmes, or how shit their Carers are, or the wildlife they see from their windows and there is nothing about their pain, physical or emotional.

I was listening to an Australian radio interview given by Jen Brea and her husband last week and she made a very potent point.  That it’s a fine line to tread between acceptance of your situation, living in the moment and finding joy and peace, yet never giving up hope that science will catch up and find a cure or effective treatments.  I think people who are in denial might feel that if they accept their situation it means giving in and giving up, when of course it means nothing of the kind.  I am completely at peace with my situation yet there is always, always hope that there will be a breakthrough, particularly in the case of M.E. and MCAD, and a treatment will emerge which will give me back at least a portion of my healthy life.  But in the meantime I have to live with my diseases and stop wasting my precious energy searching for the impossible.

When I come across people in denial, especially if they’ve been ill for several years, the blunt side of me wants to say “FFS.  Which part of the words chronic or incurable is it that you’re not understanding?!” which I know sounds harsh, but if there were an effective treatment out there none of us would be suffering.

Ironically, it’s only when I gave up hope of ever recovering and accepted that I was sick and I’d be sick forever that I actually started to improve.  For the first 6 years I’d used every ounce of emotional, mental and physical energy I had trying to research and try treatments.  But my poor brain wasn’t well enough to be on every forum known to mankind or to be spending hours each day reading other people’s stories.  My emotions weren’t well enough to cope with the continual excitement and hope of trying a new therapy and the inevitable grief and depression when it didn’t work, or more usually made me even sicker.  My body wasn’t well enough to cope with weekly trips to the therapist and the hours and days afterwards spent trying to recoup my energy.  In trying to get better I was actually making the whole situation worse.

However, it’s absolutely pointless telling people who are in denial that they are in denial because they’re not ready to let go of their old life and who can blame them?  All you can wish is that they finally find peace and acceptance, which might not make them physically better but will definitely make them happier.

 

Comparisons

Blimey, I seem to have a lot to say this week!  I blame my hormones, I’m feeling quite arsey 😉

I read an article on The Mighty about comparing all illnesses to cancer which really resonated with me.  Chronic illnesses are trivialized in general and M.E. is near the bottom of the chronic illness food chain.  It’s not seen as a ‘real’ disease to start with and certainly not one which deserves a huge amount of empathy or understanding.

I’ve lost count of the number of times my tests have come back normal and some well meaning medic has said to me “good news, there’s nothing sinister”.  In other words, there’s no cancer.  Which, don’t get me wrong, is wonderful but I’m still left being unable to eat, or passing out, or in agonizing pain with no explanation and consequently no treatment.  For 20 years.

One of the most hurtful things my Mum has ever said to me is about her sister, who sadly died of ovarian cancer.   “Your poor Auntie, I’ve never seen anyone suffer the way she did for those two years.”  Er, what about your daughter who spent ten years in bed having seizures, unable to eat anything solid for a whole year, unable to speak for a whole year, whose hair fell out and has not grown back, who was terrified, isolated, in dreadful pain, unable to sleep, whose feet turned in so she was unable to walk, whose hands turned in so she couldn’t even pick up a cup………..the list could go on and on.  And who now faces a future of chronic pain, increasing disability and the daily threat of anaphylactic shock.   My Aunt had a loving husband, three loving children and partners, a Macmillan Nurse, a fabulous GP, attended a support group for cancer patients every week and was hospitalized when needed.  Not left in a bed alone for a decade without care of any kind.  She was 76 years old, with a full life behind her, family, memories…….not 26 with her whole life ahead of her.  She did pass away but she’d lived first.

My cousin’s husband is sixty and two years ago was diagnosed with chronic leukaemia, a disease you can live with for many years and which often doesn’t even need treatment.  He is receiving excellent care, has three monthly checkups and every time anyone meets his wife they ask after him and offer help and support.  No-one even asks after me any more.  My Mum regularly sees my cousin and knows all about her husband’s treatment, yet when we speak she’s totally lost interest in how I’m feeling.  Well, it has been 23 years so I’d imagine it gets a bit boring listening to me reel off which part of my body is hurting today.

I’m not comparing the two diseases, simply pointing out the different way cancer is treated by both medical staff and the public compared to a chronic illness.  It’s like we should be glad our disease hasn’t killed us (even though both my M.E. and MCAD have had a bloody good go) and of course I am, but that doesn’t negate the lifetime of suffering I’ve gone through.  I’ve had back pain for 40 years now and when you’re allergic to painkillers and can take nothing to give yourself a break trust me when I say it really gets you down, especially on top of the thirty odd other symptoms I also have.

From the get go I’ve been told I should be “glad it’s not cancer” but I’m not sure why I should be glad to have illnesses that have made me spend half my adult life in bed too exhausted to feed myself, have robbed me of a husband and children, holidays, fun, employment, money, sleep, food, the ability to walk or even sit up some days, pain so severe I want to take a knife to my body parts, nausea, retching so severe I’ve damaged my oesophagus, my ability to read, speak or write like I once did and all the things which really make us who we are and our lives meaningful.  Since when did that become trivial or irrelevant?

There are excellent provisions for people with cancer.  Specialist hospitals, nurses, and clinics and if you have cancer you can get to see a GP the same day – they might even come to see you.  Yet there is nothing for M.E., EDS or MCAD in the whole of the north of England.  Not a specialist Consultant, not a specialist Clinic, not specialist Nurses or specialist Physios and if I want to see my GP it takes me 6-8 weeks.  I receive no care whatsoever.  And it’s not right.  It’s not right to make one disease more important than any other.  It’s not right to say that one person’s suffering is worse than another person’s suffering.  It’s not right to treat one person’s pain and ignore another person’s pain.  It’s not right to recognize the emotional impact one disease has on a person and ignore the emotional impact another disease has on a person.

You can’t compare diseases.  Is Cancer worse than Parkinson’s?  Is Parkinson’s worse than ALS?  Is ALS worse than Schizophrenia?  Is Schizophrenia worse than Cystic Fibrosis?  Where is the line?  How is one disease compassion and treatment worthy and another not?  Is the possibility of death the only reason to treat disease?  What happened to easing pain and distress or do we not have the money for that?  What price suffering?