Tag Archives: grief

Stages of Illness

Being chronically ill is a journey and like any voyage we will all react differently to the experience depending on our personalities and circumstances.  I have friends who spend every waking moment online pouring over the latest research and keeping up to date with every ounce of information, and others who barely ever open their laptop.  Those who belong to every charity and support group going, and others who don’t want any part of the sick community.

During the first two years of being ill with M.E. I didn’t know much about the disease and quite frankly wasn’t interested.  I was going to get better soon and leave it all behind me.  I wasn’t so much in denial, as misinformed by a medical profession that told me that most M.E. patients recovered in 2 years and I didn’t see why I should be any different.

Then I became severely affected, was ill-health retired from work, my unused car was towed away and I realized I wasn’t going to miraculously wake one morning cured, so the next 6 years were spent searching for a way to get better.  I spent every waking moment in cyberspace, pouring over research.  Joined every group I could find, debated obscure theories and tried every wacky pill, food and therapy.   Looking back, the arrogance that I would be the one to find a cure when the best doctors and research brains in the world could find no effective treatment for the millions of ME sufferers worldwide, was staggering.   I was in complete denial and my life was basically on hold.

After 8 years of living with M.E., and with many of the ‘treatments’ having made me worse not better, I was mentally, physically and emotionally exhausted and finally realized that the definition of “chronic” illness is that it persists.  If there were a cure or effective treatment we would all know about it, and it was about time I started trying to live with the disease instead of fighting it.  I’d had time to deal with the grief of losing my old life and could finally accept the reality of my new one, while never giving up hope that one day a cure or treatment would be found.

26 years on I hardly ever give M.E. a thought.  I subscribe to the ME charity magazine, not particularly to read it because I’ve heard everything in it a hundred times before, but so that my subs help the charity.  Other than that I’ve mostly left the M.E. world behind.  My illness is fortunately stable, I know how to manage it and if some brilliant effective treatment is found it will be headline news – I won’t have to find it on a Facebook page or some obscure online messaging board.  I am successfully living with my disease.  I have also, if I’m honest, given up hope of a treatment being found in my lifetime and even if it were I’m fairly sure that after nearly 3 decades of the disease ravaging my body it has done irreparable harm.  And I’m OK with that, I truly am.

It’s also now a decade since I was diagnosed with hEDS, and 7 years since I was diagnosed with MCAD.  I reacted to both diseases in the same way as I’d reacted to M.E. – initial denial, followed by 2 years of frantic research and information gathering.  I was lucky in that I found ways of managing both fairly quickly, and didn’t spend quite so  many years as I had with M.E. being angry at my GP and consultants for not being able to ‘fix’ me, and am grateful I’m now fairly stable, though the menopause has buggered my hEDS up royally.  I simply get on with life.  I’m genuinely not interested in the latest research, information, treatments nor anything else.  I’ve been down that rabbit-hole before with M.E. and it’s a massive waste of my time and precious energy.  If my hEDS or MCAD weren’t stable it would be a different kettle of fish, and I’m sure I’d be searching for a better way of managing things, but as they are I’m not really interested.

For me, there came a point in my journey with chronic ill-health where I had to start living with my diseases and not existing in a grieving state of limbo.   My days fly by.  I’m busy with my home, dog, parents, friends and hobbies.  I don’t want to dwell on being sick for another minute of any day.  Life is short and I have to live it to the best of my ability within the confines of the circumstances in which I’ve found myself.  I am totally at peace with my situation.  Even as I write that I know there will be people reading it who will think I’ve somehow given up – I would have felt the same way 20 years ago.

M.E. is a very complex disease.  It’s not going to be cured by something you eat or don’t eat, by some tablet you can buy at the health shop, or by listening to an NLP CD.  Do people who get M.E. now not think we old-timers have tried all that shit already?  The same can be said of MCAD.  Thankfully I’m managing to control some parts of the disease by massively restricting my diet but it’s not cured.  I still wake with hives, I still have horrendous migraines, I am still dermographic, I still risk anaphylaxis with every tablet I take, or every new food I try, but then it’s a chronic disease – for me, one I was born with – so I’m not expecting to be symptom free.  I don’t read all the latest research or belong to any groups – I’m too busy doing other stuff and if someone suddenly discovers a cure or hugely effective treatment for Mast Cell Disease I’m sure I’ll get to hear about it.

What I’ve learned from living with chronic disease for nearly 3 decades is that the best you can hope for is to manage your symptoms well and to be at peace with your situation.  If you can find a way of doing that, which will be unique and different for all of us, you can have a life despite your situation.  It might not be the life you wanted but then very few healthy people ever get to live the life they truly want.   Life is, for the most part, a compromise for all of us.

Realistically, I also know that if I were completely cured of all my diseases tomorrow I would just be presented with a whole new set of challenges.  I’d have to find a full-time job at the age of 52 with no up-to-date skills or experience.  I still wouldn’t have a partner, and my parents would both still be old and sick.  I wouldn’t suddenly have a whole new set of friends to do stuff with, so would still be flying solo.  I would have to grieve and be angry all over again for everything that three decades of ill health had taken from me.  Post-ill-health life wouldn’t be some nirvana where my garden was wonderfully rosy.

We can’t judge each other for being at different stages of our illness experience.  I forget what the early years of being sick were like, and the newly diagnosed can’t hope to understand my life as an old timer.  Our coping strategies will also be vastly different.  Our homes lives and the amount of support we have, or don’t have, varies wildly.  Our economic status has a huge impact on our wellbeing, as do factors like whether we have children or are happily married.  A million and one variables will drive how we cope with our situation.  None are right, or wrong, just different.




Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’

One last day

I’m going to go off on a tangent unrelated to my health and this post might seem controversial, but as you all know I just say what I think based on my own experiences.

When I had severe ME in my late twenties I was told on two occasions that I was critically ill and might not make it through the night.  I’ve also suffered the loss of several friends and family members as outlined in this post.  For many years I’ve been acutely aware that life is fragile and it can be taken away at any moment.  It’s had a profound effect on how I live.

I love to watch Mediums on TV, like John Edward, but am amazed at how many times the people he’s reading are in tears saying “I didn’t get to say goodbye”.  While I totally understand this in very unexpected deaths, eg that of a child or younger adult, I’ve never really understood it when it comes to older people.  The second my parents reached 60 I started to prepare myself to lose them.   None of us live forever and the one certainty in life is that we’re all going to die.

If you have something to say to an older relative get it said.  I don’t really do gushy, but I always buy my parents lovely birthday and Christmas cards with verses in which tell them how much I appreciate and love them.  I also show how much I love them every day in everything I do for them.  How much more time do you think you’re going to have?  Every day when you say goodbye to an older relative realize it could be the last time.   If you don’t have the relationship you would like, fix it or let it go.  I let the relationship with my biological Father go when I was in my twenties, I’m at peace with my decision, and if he died tomorrow it wouldn’t even register with me.  Have no regrets that are going to haunt you when they’re gone.

My Facebook feed is full of people saying how much they miss their parents.  Every Mother’s Day, Father’s Day, anniversary of a death and birthday they post how much they are thinking about their departed relative.  I just don’t get this need to share grief with the entire universe.  Your parents are fundamentally the most important people in your life.  What do you think is going to happen when they die?  You will miss them every second of the rest of your life.  You will never be the same again.  Why do you need to tell everyone you know this?  Isn’t it bloody obvious?

I’ve been to lots of funerals.  The friends and relatives stand there and give glowing eulogies telling us all how special their loved one was and how much they meant to them.  I wonder just how many actually told the dead person while they were still here?  I really don’t think I’ll have anything to say at my Mum’s funeral.  She already knows how much she means to me.  We  often reminisce about her childhood and my childhood and our life experiences.  For sure I’m not going to stand there and make her out to be some kind of Saint because that she most certainly is not.  She’s a complex, flawed human being who’s made a ton of mistakes and some very poor choices, many of which have impacted my life in extremely negative and destructive ways.  Which doesn’t mean I don’t love her and won’t miss her every second of the rest of my life.  I just don’t need to tell a church full of people this because it’s only relevant to me and my Mum.

We all seem to sleepwalk through life and I don’t get it.  We always think there’s going to be a tomorrow.  A better day.  A day to sort things out.  But life isn’t like that.  Today is all there is.  Live it like it’s your last, or someone else’s last, because one day it will be.