Severity

All my diseases have a spectrum.  There are those with mild symptoms who carry on a relatively normal life and those who are wheelchair, house or bed bound and need help with the basic tasks of everyday living.  On top of that chronic diseases can change – you can start off in one camp and end up in another.  My M.E. started off moderate, I had travel vaccinations which led to me becoming very severe, then gradually over many years I made it back to moderate again.  In respect of my EDS I had few problems, apart from my back which started hurting as a child, until I was 40.  And I had no bothersome MCAD symptoms until I was 30 and all hell didn’t break loose until I was 44.

The severe end of the spectrum of my diseases is woefully under-represented, M.E. in particular.  Severely affected people are too ill to participate in life, and the Carers of severely affected people are too exhausted from their caring duties, so you won’t see either of them represented on the boards of Charities.  Charities tend to be run by people with milder forms of diseases and their illness experience tends to reflect the way the Charity is focused.  The ME Association, for example, in the early days of my disease hardly ever mentioned severely affected people.  It’s only when Neil Riley, who is himself more severely affected, took over as Chairman that this changed.  And these days I often struggle to read the posts of EDS UK and the HMSA, with their relentless positivity and endless photos of fun runs which bears absolutely no relation to my illness experience.

Chronic illness also changes as you age and older people again aren’t well represented on the boards of Charities.  As a child and young adult being hypermobile was a positive boon.  I was unusually strong for a girl and my body was lithe and supple.  I did aerobics, I danced, I lifted weights, I cycled to work and back.  Fast forward to middle age and I literally struggle to get out of bed in a morning (more on this in my next blog post).

Health care for severely affected people is dire.  If you can’t do physiotherapy/pilates my experience has been that you’re simply left to rot – even the specialist EDS unit in London won’t accept you if you’re not up to a 2 week in-patient physio course.   Bedridden M.E. patients receive virtually no care.  There are no inpatient M.E. beds for severely affected people in the entire country and it’s not like Consultants do home visits.  So, paradoxically, the more sick you are the less health care you receive.

This is in direct contrast to other chronic diseases.  My Mum has severe and chronic heart and lung disease, but she attends a 6 monthly heart clinic and a 6 monthly lung clinic and we have specialist nurses on speed dial.  And so far my Dad’s dementia care has been excellent, with a specialist Psychiatrist and a lovely specialist nurse who we can ring with any questions or concerns.   There is no cure for either my Mum or my Dad, just as there is no cure for me – the difference is their diseases are monitored and managed while mine are simply ignored.

In my younger days I tried to change the situation.  When the Government announced the setting up of M.E. Clinics around the country I volunteered as a patient representative for the severely affected.  It was a waste of time and my input was ignored completely.  These days I simply don’t have the energy or emotional resources to even try to tackle the problem – I’m too exhausted just trying to get through the day, to eat, to bathe, to run my home and to take care of my parents.  And there you have it: the more ill you are, the less you are able to participate and the more invisible you become.

 

Things I used to do

I’ve been ill since I was 26 and next year I’ll be 50.  I don’t ever dwell on the past or the person I used to be because it would drive me to despair, but for some reason I woke this morning thinking of some of the things I once did that I no longer do.  I used to:

  • Shower every day (not once a week).
  • Play the saxophone.
  • Push a trolley round an actual supermarket.
  • Read voraciously and remember what I’d read.
  • Do dance aerobics.
  • Shave my legs and my armpits.
  • Follow the news.
  • Diet (even though I only weighed 7½ stone, 105lbs).
  • Spring clean.
  • Lift weights (I had a bench press in my house, I needed it to keep my dodgy back strong).
  • Go to the cinema.
  • Have facials.
  • Drink a glass of wine with my dinner, sometimes two!
  • Paint my nails (I now can’t even reach my feet).
  • Work a 12 hour day.
  • Play board games (I had the mental capability then, and someone to play with).
  • Moisturize my skin religiously.
  • Wear make-up.  I could still do this if I wanted to, but can’t see the point.
  • Have holidays abroad – I’ve travelled to 42 countries.
  • Wash my car and lovingly polish it.
  • Play loud music and go round the house dancing like a looney tunes.
  • Go out for dinner and not worry about having anaphylaxis and passing out.
  • Play tennis.
  • Bake birthday cakes for my loved ones.
  • Wear high heels.
  • Take courses to learn new things, like shorthand or the Jitterbug.
  • Go for days out wherever the fancy took me.
  • Do sit ups – I had great abs even though I do say so myself.
  • Have massages.
  • Decorate the house at Christmas.
  • Took tablets without worrying about dying.
  • Go clothes shopping in the city……..for the whole day.
  • Do intricate needlepoint.
  • Eat whatever I wanted.
  • Be spontaneous.

It’s amazing what I used to pack into a day without a second’s thought.  I’d be up at 6.30am, take my dog on a 2 mile walk, come home, shower, have breakfast then drive 20 miles to the city through rush hour traffic for 9am.  I was doing 3 demanding jobs, yet still managed to meet my girlfriends for lunch.  I’d get home at 6.30pm, make my dinner, get changed and either go to aerobics or see my boyfriend.  Weekends we’d often go away for a couple of days, or out with friends to the cinema or for a meal.  In between I’d do housework, laundry, the grocery shopping, see my parents and was in the middle of renovating my 3 story Victorian house, staying up til midnight to strip woodwork, chip off plaster, hang wallpaper or paint dado rails.  It was all so easy, so effortless and without consequences.  It really was another lifetime.

Weekly roundup

This week I’ve wanted to strangle my parents.  Either that or emigrate to a desert island and just leave them to it.  I don’t usually go through to see them on Wednesdays as my cleaner is here and she hoovers inside my car for me, but of course I ring them.  Which I did no less than 4 times.  The next day I made my usual 9am phone call, asked if everything was OK and was reassured it was.  Then an hour later Mum rings back to say “oh, I forgot to tell you earlier your Nan had a small stroke so your Dad’s going to see her in the Care Home this afternoon”.
“When did this happen?” I ask.
“Yesterday”.
“And you didn’t think to tell me when we spoke on the phone last night?”
“I didn’t know last night.”
“Er, I’m confused.  Why did Dad not tell you yesterday?”
“Well he got the call on his mobile while I was in A&E so he didn’t tell me until this morning.”
“What were you doing in A&E?”
“I fell in the kitchen and split my arm open.”
“And you didn’t think to tell me this last night?  Or when I rang an hour ago?”
“Well I knew you were tired last night so I didn’t want to worry you” which is bullshit, she didn’t want to tell me because she will have been drunk  “but you’re right, I should have told you this morning.”
I give up.  I give up that my Mother ended up in A&E and neither she nor my Dad felt I should know and I give up that my Nan has a stroke and my Dad doesn’t even bother to tell his wife or his daughter.  WTF?!

Tuesday I’d asked an odd job man to come and do me some painting outside as I’m simply too exhausted, busy and in too much pain to do DIY myself.  He was to do my downspout, my tiny little front gate and the outside of my shed doors.  He was charging an extortionate £20 an hour but I thought he’d get those small jobs done in less than a day.  Think again.  Not only did he not finish he made the worst job I’ve ever seen in my life then charged me £172 for the privilege.  My downspout was left streaky and when he painted the shed doors he got white paint all over the green hinges and fixtures which will now need to be re-painted even though there was nothing wrong with them:


And despite putting 3 coats of paint on the gate he left it looking like this:

Of course, he wanted to keep painting the gate until he got it right but at £20 an hour I told him to forget it.  So that leaves me having to finish the gate, get up a ladder to put another coat on the downspout and painstakingly go over all the shed hinges and latches with a tiny brush myself.  This is why I don’t ask people to “help” me.  Needless to say I will be deducting 4 hours at £20 an hour off his bill to pay for the time it will take me to put his shoddy work right.  If he wants to take me to the small claims court for the rest he can be my guest.

Thursday I made the 1½ hour drive to the other side of the County for a bone density scan and the 1½ hour drive back.  They won’t tell you the results so I was told to make an appointment with my GP for a week’s time to discuss.  I just laughed.  It takes me 7-8 weeks to get an appointment with my GP.  If the results are OK you simply never hear another thing about it.  If they’re not OK the GP will get round to ringing you – eventually.

Following the Brexit Referendum I had to endure all the “we are doomed” reports on Social Media from my friends who spouted endless diatribe about our country’s “catastrophic” decision to leave the EU.  Today, a month after Brexit, the FTSE 100 is at an 11 month high and as reported in the Telegraph: “The pound bounced back after the Bank of England agents report showed “no clear evidence” of slowing economic activity following Britain’s vote to leave the EU”.  You have no idea how much I want to say “I told you so” but I shall try my best to restrain myself😉

Friday I got stuck in a car wash. I drove in, the water skimmed over my car, the brushes descended onto my bonnet……….and just sat there.  There’s a sign on the side which tells you to ring a number if you need help, only when I rang it the line was dead.  Helpful.  Luckily I managed to back the car out and go and tell the kiosk lady what had happened.  “Here’s your money back then” was all I got out of her, not even a free sodding wash for when it’s fixed!   It could only happen to me😉

p.s. you’ll be pleased to know I’ve woken this morning my usual calm, unruffled self.  I have period pains so am definitely blaming yesterday’s arsiness on my hormones!

 

I’m On One

I have days where the second I open my eyes in a morning I know I’m “on one”.  I feel arsy and irritated and could fall out with my own finger ends.  Today is one of those days.  It’s only 6.45am and the world and everyone in it already annoys the shit out of me.  It could be hormones – I’m on day 18 of my cycle and last month my cycle was only 19 days – or I could just be having one of those days.  Whatever the reason I’m wound up like a cog and I haven’t even had breakfast yet.

I have two “friends” on Facebook who feel the need to challenge everything I say.  They never write anything positive but are the first people to write something negative.  I want to tell them to zip it.  I want to be able to have an opinion on the world without constantly being told they don’t agree with me.  It may be childish but I reserve the right to have childish days even though I’ve been a grown-up for some time.

On days like this I hate my neighbours.  I particularly hate the farmer who lets his dog bark at 5am every single morning which means I have to sleep with all my windows closed if I don’t want to be woken at the crack of dawn.  We’ve had a mini heatwave this week, with Tuesday reaching the dizzy heights of 31C, and I had to sleep in a stifling hot room with no fresh air so that I could actually get some kip.  I hate my neighbours who have lawns and spend every second of the weekend mowing them.  It’s like sitting in a huge dentist’s waiting room listening to the sound of the drill.   I also hate all my neighbours who own pressure washers and spend hours and hours and hours washing their cars, driveways and every other stationary object in a 10 mile radius.  I miss the quiet Sundays of my childhood, when nothing happened because it was a “day of rest”.  There are no days of rest anymore and no opportunity to enjoy any kind of quiet time in my garden with a good book.  I want to hammer on all my neighbours’ doors and tell them to SHUT THE FUCK UP!

On days like this I hate every other driver on the roads, especially those who seem to’ve forgotten what indicators are for.   I have murderous thoughts about people who zoom up to roundabouts in the wrong lane, because their time is too precious to queue in the right lane, overtaking everyone sat in the right lane and swerving in front of us all to reach the front of the queue.  It’s fucking RUDE!  I hate motorbikes who think the speed limit doesn’t apply to them.  I hate cyclists who ride abreast on single track country roads, making me crawl along behind them at 10mph, unable to overtake, so they can have a chat to each other.

I hate people who come on my blog and tell me I have this disease or that disease even though they don’t know me from Adam and have no access to my medical notes.  Or who tell me there’s no such disease as M.E. and I just haven’t searched hard enough for what’s actually going on.  If they knew how insulting that was or how much I loathe them they’d step away from the keyboard.  I have a particular loathing for people who come on my blog and moan my low histamine diet isn’t low histamine when they clearly have no fucking idea what they’re talking about.  I actually want to strangle them.

I hate the cat who walks all over my car at night, leaving kitty footprints all over my bonnet when I’ve just spent £9 getting it washed and waxed.  It must have slipped on my last car because it left a foot long scratch all the way down the front which I couldn’t get out so I now have to remember to cover my car up every single time I use it.

I hate so called “friends” who don’t contact you for an entire year because they’re “not well” or “having a hard time” but don’t give a flying fuck that you might be “not well” or “having a hard time”But then expect you to still care about what’s happening with them when actually you couldn’t give a toss because they obviously don’t give a toss about you.

I hate people I barely know, who don’t have my diseases or care for someone with my diseases, reading my blog just to spy on me and then talk about my very private life to other people.  It’s creepy and they need to fuck the hell off.  Come to think of it, I hate people I know really well, who don’t have my diseases, reading my blog just to spy on me.  They need to fuck off too.  On the same theme, I hate people who never post jack shit on Facebook about their lives but read every morsel you write on Facebook about your life and then gossip about it.  Nosey bastards.  Get a life of your own, then you might not be quite so interested in mine.

I could go on…….and on……..but I’m hungry and need some breakfast.  I’m sure my zen will return tomorrow but in the meantime I need to steer clear of the knife drawer😉

 

 

Consequences

Yesterday I attended a 2 hour Paintballing Fun Run in aid of the cancer charity MacMillan.  Some of my friends and family were taking part and I went along to take some photos.  The weather was perfect and the atmosphere was brilliant.  Everyone was in a great mood, the children were all dressed up and as I camped out at the finish line I had a fab time feeling the emotions of the runners even though I obviously couldn’t take part myself.


As I stood there, camera in hand, I looked as fit as a Mallee Bull.    Yes I was wearing an SI belt,a wrist brace and 2 knee braces but other than that I looked just like everyone else.  And while I was there I felt just like everyone else.  If I got down on one knee to take a picture I struggled to get back up again and I had to keep shaking and rubbing my arms because they were aching and cramping with holding the camera up to my face, but other than that I was tickety boo.  The consequences came later.

On the drive home I started to feel nauseous and more than a bit dizzy.   My ears were ringing from sound overload and my head felt buzzy like it was filled with insects.  My legs were aching and my back was cramping.  I was starting to feel intense exhaustion, like I’d spent the afternoon rock climbing.  I couldn’t wait to get into bed.

I lay there trying to rest but it was impossible.  My brain was way overstimulated – I might as well have taken Speed.  My thoughts tumbled and churned and it was impossible to switch them off.  I sat back up again, put on my computer and had a look through the images from the afternoon.  My head started to pound and my throat felt sore and swollen, like I was coming down with some kind of lurgie.  Of course I wasn’t, my throat always hurts when I overdo it, it’s one of my warning signs.

My legs ached, twitched and burned.  The tops of my arms throbbed – you’d think I’d spent the afternoon lifting 50lb weights not a tiny little mirror-less camera!  By 6.30pm I knew I should probably eat something but the thought of food made me want to throw up.  I was drinking water, cordial and cups of peppermint tea like it was going out of fashion though because I had a raging thirst, which of course made me pee every half an hour.

I usually settle down around 9pm, watch TV for an hour and go to sleep around 10.30pm but last night I was buzzing so carried on working on my images.  At 10.15pm I started to yawn, so even though my brain was still as high as a kite I switched off my laptop and settled down to watch my favourite programmes.  Concentration was nigh on impossible and I know I’m going to have to watch them all over again later in the week because this morning I can’t tell you a thing that happened.  The bedside lamp was finally turned off at 1pm where I lay with my brain exploding flashing coloured lights, my arms and legs aching and on fire and trying to swallow past my tonsils which felt quadruple their usual size.  When I eventually fell asleep it was peppered with sweaty, thrashing dreams.

This morning I feel like I’ve been dragged through a hedge backwards.  The soles of my feet are so painful just walking to the loo on my hardwood floors was tortuous.  My brain feels bruised and battered and my throat is so sore if I didn’t know better I’d swear I was coming down with Strep throat.  As I’m typing this my right hand is shaking with the effort and the muscles in the tops of my arms are aching like a son-of-a-bitch.  My legs are on fire, my ankles have seized up and my brain is both fuzzy and buzzy.

But the worst is yet to come.  I won’t sleep again tonight and tomorrow I’ll feel like I’ve been in a car crash, my whole body bruised and aching.  On top of that I’ll feel like I’m coming down with the flu, my throat will be killing me, I’ll be freezing or boiling or both, my whole body will feel like it’s got toothache, my joints will have stiffened and I won’t be able to string a sentence together.  My “post-exertional malaise”, a hallmark symptom of M.E., usually reaches its peak 48 hours after activity and I’ll probably feel crap for the rest of the week.

This is the part of my life which people don’t see.  They see the 2 hours I spent looking to all intents and purposes like a normal human being, but they don’t see the consequences.  I actually have nightmares about being secretly filmed by the Department for Work & Pensions who take me to court to say I’m not sick at all – look here’s the proof!   But they’re not in my bedroom for the next 4 days as the consequences of activity kick in.  Those 2 little hours of normality cost me 4 days of pain, nausea, weakness, dizziness, brain fog and insomnia.  And during those 4 days I don’t have the energy to cook so I don’t eat.  I don’t have the resources to do anything for my parents so they go without.  My jobs in the house pile up, my post goes unread and by the time the weekend arrives I will feel overwhelmed by life.

Were the 2 hours of normality worth a week’s worth of suffering?  Absolutely.  My mental and emotional health need days like yesterday but by necessity they have to be few and far between.

Weekly Roundup

This week has zipped by like a gnat on speed but I’m not entirely sure what it is I’ve been filling my time with.  Had my 6 monthly dental checkup (people with EDS need more regular check-ups than healthy people) and need yet another filling.  Oh joy.  All my molars were filled by the time I was 20, and now I’m nearly 50 they’re so old they’re having to be replaced.

My big news of the week is that on Thursday we received the results of my Dad’s CT scan, which showed absolutely nothing.  You’d think this would be great news, but the Psychiatrist still thinks my Dad has Alzheimer’s and it’s just too early to be showing yet.  She’s arranging for him to see a Clinical Psychologist for some further indepth memory and functioning tests, which we’re hoping once and for all will give us a firm diagnosis.  The diagnosis is important, because if he does have Alzheimer’s he can be started on drugs to slow down the progression of the disease.

Alzheimer’s is a notifiable disease to the DVLA, so the Psychiatrist has referred my Dad for a driving assessed by a specialist team that deal with people who have medical conditions.  My Dad has occasionally driven right through red traffic lights like they don’t exist, so I’m relieved something is finally being done about his competence on the roads.  Having his licence taken away will cause huge issues though as my Mum no longer drives and it’s not like Cumbria has great public transport.  There is a town bus, which my Mum can’t access as she can’t walk far enough to get to the nearest stop and Dad is no longer strong enough to push her in a wheelchair, and if they want to go outside town they’d be scuppered because the distances involved in living here make taxis cost prohibitive and there are no buses whatsoever.  It will just put more strain on me to chauffeur them around.

Even though I was expecting the news it still came as a shock and I felt quite overwhelmed by the situation on Friday, knowing that the responsibility of caring for him will fall on me.  My lovely best mate rung me though and just having a chat and a laugh with her helped perk me up again – without her support I would feel absolutely and utterly alone.

It’s been 2 months now since my insurance company decided to take a third of my income off me, as outlined in this post, and I’m getting nowhere in trying to sort it out.  My insurance company first tried to pay me less money in 2011.  I took the case to the Financial Ombudsman and won.  My insurance company were told to re-instate my money in full, which is a legally binding Decision.  I have no idea why they’re now breaking the law by taking my money off me again.  I immediately wrote to the Financial Ombudsman to inform them of the situation but have heard absolutely nothing.  I rang on Friday but you never get to speak to the Adjudicators and always just have to leave a message.  I said I was in financial difficulty and needed them to ring me back that day but of course they didn’t.  Ombudsman’s Decisions are enforceable by the Courts, so my next option is to get my Solicitor on the case.  He’s been on holiday but is back on Monday, so I’ll ring him and ask his opinion.  Luckily (or unluckily whichever way you want to look at it) I’ve had to use my Solicitor for various things over the last 30 years so he does actually know me and I feel comfortable talking to him.  It could take months and months to sort out though and the entire time I’m living on fresh air.  With everything else going on my life I don’t sodding well need the stress, I really don’t.

To take my mind off everything, I’ve been experimenting with my photographs in my spare bedroom, which last year I dismantled being as though I never have visitors to stay overnight (in fact I never have visitors full stop) and turned into a little studio.  Next season at Camera Club one of the competitions in on the theme of fruit and this is my interpretation.  I’ve made it smaller to put online, which seems to’ve made the black background a bit weird, but it’s just totally black in ‘real’ life.   Disclaimer: no snails were hurt in the taking of this photo and were put back in my garden to decimate my Hostas after the event 😉

Who Cares?

Until my Nan went into a Residential Care home in 2013 my Dad was the person who looked after her, going round to see her every day of his life.  She had Social Services Home Care workers go in 4 times a day to help her get up, bath her, feed her lunch and dinner and put her back into bed at night, but my Dad did everything else including all her shopping, washing, paperwork, taking her to hospital appointments (which were numerous) and, when she deteriorated, regularly being called out at all hours of the day and night when she fell and couldn’t get back up.

The strain was immense but my Nan was lucky that my Dad at that time was fit and well and able to manage.  He was, however, flagged as a Carer and had an assessment of his needs as a Carer.  He was regularly monitored to see how he was coping and offered the choice of attending support groups to chat and socialize with other Carers because it’s well recognized that taking on a caring role is incredibly stressful and exhausting and can affect both the Carer’s physical and mental health.

I am now in the same position as my Dad.  My Mum is very physically disabled: she has half a lung, is in heart failure and kidney failure.  On top of that she’s an alcoholic so spends most of the day drunk and confused.  My Dad has been suffering with the symptoms of Dementia for 2 years now and is becoming ever more child-like in his ability to cope with day to day life.  As yet they don’t need care to bathe or feed themselves (well, actually, they do and Mum only showers once a week now as it nearly kills her) but they need help with everything else.  I do their shopping, all their paperwork, look after their home, do most of the driving and take them to all their hospital appointments.  I speak to them every day, sometimes several times a day, and visit them 4 days a week.

The difference between my Dad caring for his Mum and me now caring for my Dad is that I’m not fit and well, and actually need help and my care myself.  Which I don’t get.  In fact during my 22 years of chronic illness I’ve never got.

I took my Dad to see the Older Person’s Psychiatrist yesterday for the results of his CT scan.  We were there for a good 45 minutes discussing my Dad’s issues and the amount of care both he and my Mum need and not once did anyone ask me how I’m coping.  Dad, Mum and I all have the same GP who is perfectly well aware of the situation but again has never once checked on me or referred me for an assessment of my needs as either a Carer or someone who needs Care.

How have I manged to fall through the cracks all these years?  Is it simply because I’m young and it’s assumed that young people have husbands, partners and families who will care for them?  But then old people usually have families that will care for them yet they still get state care.  Yes I could refer myself and fight for a Carer’s Assessment but my Dad didn’t have to do that – help was offered to him as soon as his role as a Carer was recognized.

Without sounding like a moaning minnie, my whole illness journey has been underpinned by abandonment.  My entire family, apart from my parents, have abandoned me.  My boyfriend abandoned me.  The NHS have abandoned me.  The care system has abandoned me.  And both my private insurance company, and the welfare state, is currently having a pretty good go at financially abandoning me.  Every penny and every ounce of help I’ve ever received has had to be fought for – and I do mean fought for.  I gave up fighting to keep my relationships with family and friends because I do have some pride and am not about to beg to be loved.

Yet this hasn’t been the experience of many of my friends.  One of my mates who has had ME for roughly the same length of time as me lives with her parents both of whom need care and she’s had a Carer’s assessment.  She has also had 6 monthly appointments with her GP simply to check her progress for the whole 20 years of her illness.  The state has paid for various aids and adaptations to their home, while I’ve been left to fork out for my own despite being on one single low income.  I don’t know why I’ve been left to fend for myself and she hasn’t.  Maybe it’s because I’m so strong and capable and on top of things.  But I’m that way because I’ve had to be, as I’ve had no-one to lean on or help me out.

When I ask myself the question “Who Cares?” my answer is no-one.