Tag Archives: death

Another M.E. Death

The M.E. community were shocked and saddened to hear of the death of M.E. warrior Jennifer Chittick yesterday (24th May 2019).  Jenni had endured severe M.E. for a decade, was bedridden and reliant on her parents for care.  We don’t know the cause of death, but to lose your life aged just 31 is absolutely tragic and my heart goes out to her family and friends.

Just a day before she died Jenni had been the subject of an excellent article in the Daily Mail newspaper on the abuse and neglect faced by M.E. patients.   Her story echoed mine and her tragedy could so very easily have been mine.

I became severely affected by M.E. aged 26.  I lived alone and was told by my GP “we don’t have enough home care workers for people with cancer so you stand no chance” and I was just left to look after myself, despite the fact I once spent 4 months barely able to open my eyelids.  For 6 years I crawled to the loo on my hands and knees and never cleaned my teeth.  My Mum made a meal for me every day, after working full time, and my Dad drove across town with it in the car on a tray for me – it’s the only nutrition I had other than cereal and the odd smoothie.

At one stage I was so ill I simply couldn’t manage any longer at home alone.  My GP arranged for me to be admitted for respite care to the neurological rehab wing of my local hospital.  There were no doctors there and I was mostly looked after by physios – this was a ‘rehab’ ward after all!  I didn’t know then that I had Ehlers-Danlos syndrome, and I was told it was brilliant I was so flexible!  I had huge problems eating solid foods, not least due to oesophageal spasms (now known to be due to mast cell disease) and gastroparesis (now known to be due to hEDS), so the psychiatrist was sent for and she told me I had anorexia, despite the fact I was starving, wanted to eat but was just too ill to.  I had a seizure in the presence of a nurse one day and she didn’t touch me or send for a doctor …………I’m sure if I looked at my notes it would have some psychological explanation, even though I couldn’t move my entire right side for a whole day afterwards.  I was given no help with bathing, despite the fact it was one of the things I struggled the most with.   In the end, after 3 weeks of zero help and disbelief, and being looked after by a girl who used to bully me at school, I discharged myself and went back to living at home alone.  It was pure luck I survived the next decade, both physically and mentally.

My experience happened back in the late 1990s/early 2000s.  It makes me furious that the situation hasn’t improved in the intervening two decades.  Just because a cause hasn’t yet been found for the disease shouldn’t mean we are treated as subhuman or denied basic care and compassion.  The denial of M.E. as a physical disease, and the neglect and abuse of patients, will eventually be uncovered as one of the biggest scandals of modern times.

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Killed by M.E.

The death of a young British woman has officially been attributed to M.E. this week and is the second time in Britain an Inquest has recorded M.E. as causing a sufferer’s passing, the first being Sophia Mirza in 2006.

Merryn was 21 and had suffered from severe M.E. since she was 15.  In the end she simply couldn’t tolerate food and starvation lead to her tragic death.  When I was severely affected I was simply too weak to eat solids.  In those days M.E. wasn’t treated in any way and my GP just said to get some Complan from the chemist 😦  I lived off smoothies for a year which in no way provided enough nutrition and, like Merryn, weighed under 6 stones (80lbs/36kilos).  When I was hospitalized they sent for the psychiatrist who put in my notes that I was anorexic – I couldn’t get them to understand that I was starving and wanted to eat but my body just wouldn’t take food!

Reading through Merryn’s story it was interesting to see that her M.E. began with hives and swelling following a holiday in Europe.  Knowing what I do about mast cells and my own situation I can’t help but wonder if they were involved and of course MCAD can cause awful problems with the gut.  It is not, however, going to show up on testing unless you specifically look for mast cell mediators which at the moment requires a person to go to a lab and have fresh samples done, something a severely affected M.E. patient is way too ill to do.

Merryn’s family had the brave forethought to donate her body to the M.E. Association’s Ramsey Research Fund for examination and the pathologist found brain ganglionitis (ie inflammation).  This has been found before on the post-mortem of another M.E. sufferer.  The pieces of the puzzle are consistently all there if only Doctors were properly looking for them.

My heart goes out to Merryn’s family.  I can’t imagine what the years of her illness, or the past 12 months, have been like for them.  They have been so strong in donating her body to help other sufferers and I’m just relieved that the Inquest quite rightly put Merryn’s death down to this devastating disease because if she didn’t have it she would still be alive.

 

 

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.