Tag Archives: chronic illness


I have been pesco-vegetarian for 27 years, long before it was trendy or commonplace, and I have progressive views on animal welfare.  I’ve never discussed my views on my blog, though, because it feels a bit like I’m forcing my beliefs on other people and I hate that.  Having said all that, my opinions on keeping pets will come through in this post, not to make anyone feel upset or guilty or ‘wrong’ but because my entire blog is written from my own perspective and my perspective on animal welfare is one of my strongest.  Before anyone flips out, please bear in mind that I am entitled to my opinion and absolutely nothing you can say to the contrary will change it so basically don’t waste your breathe telling me how fabulous dog crates are.

I’ve owned a pet since I was 6 weeks old.  Over the years I’ve shared my life with cats, rabbits, horses, dogs, even a pig (which was slaughtered when I was 11 and probably planted the seeds of my aversion to eating meat).   I had a chaotic and often lonely childhood and my pets gave me comfort, joy, companionship and unconditional love – I don’t know how I would have survived without them.

Looking back, however, we as a family made a lot of mistakes in our pet ownership.  For example, we got a beautiful, intelligent, loving Labrador/Collie dog then left it on its own for 8 hours a day.  The poor thing had a lonely, understimulated and miserable existence and I feel guilty to the bottom of my soul for that and still, nearly 30 years after his death, apologise to him in my prayers.   We owned a rabbit that was kept in a tiddly cage for most of its life and even though I was only 9 years old at the time and didn’t know any better I still feel guilty about it.  I am absolutely against keeping pets chained up or in confinement and that includes birds and fish.  I also think dog cages are barbaric.  I know it’s currently trendy to jail dogs, but then it used to be trendy to send children up chimneys until we came to our senses and realized it was cruel.  I’m now going to have comments from people who tell me their dog loves its cage, my answer to which is great, dogs love to have a quiet, comfy place to sleep just so long as you never shut the door and it’s free to leave whenever it likes.  I do have to put in a disclaimer here that caging an animal for short periods for health reasons, eg if recovering from surgery, is fine and in the best interests of the dog (even if the dog doesn’t realize it).  I’m even against owning horses to ride, even though I had two as a kid.  There’s a reason we call training horses ‘breaking’ them, and if you have to break a horse’s spirit to get it to do what you want I can’t see how that’s justifiable.  Plus, kicking an animals’ ribs to make it move is cruel by anyone’s standards.

“When you know better, do better” Maya Angelou

I’m saying all this because before we own a pet we need to think about the kind of environment we can provide for it.  It’s not about us, it’s about them.  Cats, for example, are mostly nocturnal and can roam up to 4 miles each night.  If you live next to a busy road and are planning on never letting it out of the house you have to consider how healthy an environment that is and whether, much as you’d like a cat, it’s actually suitable for the cat.

I already had a moggy when I got really sick with M.E.  I’d adopted him from a rescue charity when he was 6 weeks old (all my pets have been rescues) and I loved the bones of him.  I installed a cat-flap in the back door and he could come and go as he pleased, which he mainly did at night and slept the day away with me on my bed.  He was no bother to look after, even for someone as ill as me, I just had to feed him twice a day and that gave me a reason to get up in a morning.  That cat absolutely kept me alive.  On the days I felt so ill and was in so much pain I didn’t know if I could carry on I’d look at him and wonder what would happen to him if I killed myself.  Who would care for him?  Who would love him like I did?  The answer was no-one (my parents weren’t allowed to own pets in their apartment block) and I knew I had to survive for his sake.  He was tragically run over in 2002 (I think he’d become quite deaf in his old age) and I was distraught.

I now had no reason to get out of bed each day, had no-one to chat to and no-one to to cuddle.  My days felt devoid of purpose, bearing in mind I was still almost totally bedridden and very poorly, and even though I was still grieving some weeks later my parents took me to the rescue centre and we came home with another cat, a 2 year old Tom.  Being young, he was a different kettle of fish to my previous boy and much harder to look after because he was still at the stage where he wanted to play.  I found the first few months hard work, and wondered if I’d made a mistake, but eventually we settled into a new routine and developed a very special bond.

Fast forward 12 years and he developed chronic kidney disease.  We were never away from the vets in the final year of his life and it’s situations like this you have to bear in mind when you take on a pet.  Not only the expense (I spent £1000 on him that year) but the effort involved which, when you’re ill, is immense.  Luckily my M.E. had improved a fair bit by then and I was able to drive again – I would never have coped if I’d still been bedridden and I genuinely don’t know what would have happened.  I finally had to have him put to sleep in 2011.

I had such a special bond with that cat that I couldn’t even contemplate replacing him with another moggy, yet once again my days were devoid of purpose and I felt really lonely without a furry companion.  I wondered if I were well enough now to consider getting a dog and spent some weeks researching the kinds of breeds which would be suitable for someone as ill as me, eventually deciding on a Chihuahua which I read didn’t need much exercise.  I don’t agree with buying pets, though, when there are so many in rescue needing a home but as I live in a farming community all the rescue dogs were either Collies or Staffies.  I spent weeks trawling the rescue centres online but the only small dog I saw was a little chap called Bertie.  He was a 2½ year old Miniature Schnauzer, a breed I’d never even heard of, so I spent a few more weeks learning about Schnauzers and eventually decided to go and have a look.

He was actually much larger than I’d imagined (he’s 1¼” taller than the breed standard) and I was still unsure whether he was ideally what I wanted, but as he tentatively put his paw on my knee and looked up at me with huge, worried eyes I instantly fell in love.  Add this to the fact he shared a birthday with my Nanna, and had the same name as one of my family members and I couldn’t ignore the signs that he was meant to be mine.

Despite being young, Bert was a really laid back dog.  In fact, I got so worried about how much he slept I took him to the vet for a check-up, but was told he just had a chilled personality and to be grateful 😉  But that’s kind’ve where my luck ended.  I’m a terrible sleeper at the best of times, so Bert’s bed was put in the Utility room and he slept downstairs.  But he woke every morning at 4am and started barking.  To cut a lonnnng, stressful, exhausting story short it took me 2 months to get him to sleep through, and even now 6 years later he still wakes me at 6am every single day of the year and I am permanently shattered.  I thought I’d be able to leave Bertie on his own for an hour or two if I needed to, not knowing that he had severe separation anxiety.  Despite trying various behaviour modification techniques we’ve never managed to conquer this, so I need a dog sitter every time I need to leave the house.  He had various other emotional issues, including weeing in the house despite being house-trained, and it took about 9 months and a lot of hard work for me to get these sorted out.  He’s also a barker.  Terrier breeds do tend to yap for England, especially the boys, and Minis are renowned for being vocal.  Again I tried every trick in the book and in the end had to admit defeat – he just loves the sound of his own voice and will bark at a leaf floating past the lounge room window 😉  Some days, when I have a migraine or am particularly sound sensitive, this drives me to absolute distraction and is actually physically painful.  Mini Schnauzers don’t need huge amounts of exercise but they do still need to go out and obviously my walking ability is severely limited.  Having thought about this I walked him on my little mobility scooter on an 8m extending dog lead.  Bert, though, was a puller and I learned some years later that he’d never been taught to walk on a lead by his previous owner.  Our walks became a nightmare and I often came back in tears, with my painful joints in tatters.  With that, his noctural wakings, barking, emotional problems, going nuts at other dogs and general lack of being trained I was so stressed, exhausted and ill at the end of the first month that I rang my Mum in floods of tears completely overwhelmed and unable to cope.  I had no idea that having a dog was going to be that hard and I was simply too ill to manage.  She told me that my health came first and that I should return him to the pound but, as my best friend recently told me “you are one of the most loyal people I know” and for me it wasn’t an option.  Bert was family, I loved him and I would make it work no matter what.

We are apparently lucky to have one of the country’s leading dog behaviour experts in Cumbria, so I rang him for advice.  He told me I’d chosen the wrong dog and that there was no way of teaching Bert to walk to heel on a mobility scooter.  I put the phone down in floods of tears, and a fierce determination to prove him bloody well wrong.  Just because you’re disabled doesn’t mean you shouldn’t have a dog, even if the dog has issues.  Particularly if the dog has issues.  So I googled, went on forums and read everything I could about training difficult dogs and 2 long, stressful, tiring, frustrating years later Bertie and I finally came to an understanding.

We are now a team.  He walks beautifully next to my mobility scooter.  He comes when called (mostly 😉 ).  He sits, downs and stays when asked (mostly 😉 ).  He still barks for England, but no longer hurls himself at visitors and instead sits nicely by the front door when the doorbell rings waiting for his treat for being a good boy.  He’s brilliant with children.  Hopeless with other dogs.  But I can take him anywhere and he is golden.  In particular, he loves riding in the car sitting on his booster seat in the back, wearing his doggie seatbelt, with his head stuck out the window, beard and ears flapping in the wind.   We get constant compliments on what a brilliantly behaved pooch he is and I smile and think to myself ‘if only you knew’ 😉

He exhausts me, and makes me joyful, in equal measure.  I found taking him out twice a day on my scooter all too much, so now employ a dog walker for his morning walk which means I can no longer afford to buy clothes, or joint braces or other vital stuff for myself.  I insured him at £17.50 a month which, 2 MRI scans, 2 x-rays, an operation on his leg, drug induced vomiting after eating rat poison, worms, several fatty tumours, several ear warts and a bout of colitis later, went up to £70 a month so now cripples me financially.  I also have to employ a dog groomer who comes to the house every 6 weeks.  He has food intolerances, so has to be fed an expensive dog food and has to take supplements, which are another drain on my limited funds.  Without him I’d be monetarily so much better off but emotionally so much poorer.

Having a pet when you’re ill isn’t impossible, but it is a huge committment and one which shouldn’t be taken lightly.  Looking after a pet well can be stupidly expensive and absolutely exhausting.  No matter how ill you are, their needs come first.  You can’t decide one day that you’re too tired to walk your dog, or that you don’t fancy going out because it’s chucking down.  No matter how ill I’ve ever been over the past 6 years Bertie has never once not been walked twice a day, and if I couldn’t do it I got someone else to do it for me.  They may get sick at some stage, so you have to consider how you’d pay for that or if you have the resources to look after an ill animal.   Cats and dogs can live until they’re 20, so you do have to look ahead and think about the future.  But if you do feel able to take on a pet  the rewards are beyond words.  Bertie woke me at 5.30am this morning (I eventually moved his bed to my bedroom) and even though I was annoyed at being woken at the crack of dawn (again) one look at his furry little face and I just smiled.  He makes me laugh and brings me joy every day of his life and I can’t imagine being without him.



Fear & Worry

Over the last couple of decades of being sick I’ve ‘met’ (mostly online) hundreds, if not thousands, of people.  Many of them are beside themselves with worry and fear and I want to say to them “mate, take a chill pill” but that’s because I’m much further along the road than they are in dealing with chronic illness and have realized the futility of worry and fear.  I’m not trying to tell anyone how to feel, but just thought I’d share my journey with these emotions and how I managed to end up in a place of relative calm.

The first two years I had M.E. I was worried sick.  I couldn’t work, my finances were a mess, my relationship was falling apart and although my Doctor kept telling me I’d be better in two years because everyone with M.E. got better in two years (!), it wasn’t happening.  Then I got meningitis and all hell broke loose.  I thought I’d been sick before but it was nothing in comparison to the living death of severe M.E.  Now I worried every day that I might die, and nearly did.

After 4 years, I realized I couldn’t live with the worry about my relationship falling apart for another second.  So I dumped my boyfriend.  It was painful, but I needed to concentrate on my needs not live in fear every day that he would find someone else or dump me.  The worry was exhausting and I didn’t have the energy for it – I was too busy trying to find the energy just to breathe in and out.

After year 6 of being bedridden, and worrying every day I might die, I finally decided that dying would be a relief.  I was so tortured by my symptoms that I actually prayed to not wake up in a morning.  I stopped fighting, and stopped worrying, and that’s when I started to recover.  Weird huh?

My biggest fear M.E.-wise these days is that I’ll relapse and end up bedridden again.  I honestly don’t think I could live through that twice, so my internal dialogue tells me I don’t have to.  If it comes to that I’ll just kill myself and save myself the torture.  So now I don’t worry too much because I have an opt out.

My Ehlers-Danlos is currently the least of my worries.  Yes it’s painful and can make me miserable, but at the moment it’s liveable with.  If I were to think about my old age (which at nearly 50 isn’t that far off!), living in poverty, becoming increasing disabled and having no help or care I’d be worried stupid, so I simply don’t think about it.  I have enough on my plate getting through the day without panicking about a future which is at best uncertain – I could get run over by a bus tomorrow and all that worry about the future would have been for nothing.

My Mast Cell Disease, on the other hand, is a different kettle of fish.  I live every single day in fear of anaphylaxis and ultimately death.  I have to take H2 antihistamines for my GERD, without which I am suicidal with pain, yet after every single tablet I hold my breath for an hour waiting to have a reaction.  I’ve taken H2s before and tolerated them fine for 18 months before my body rejected them, so it’s not an unreasonable fear to have.   Each time I take a pill my internal dialogue goes something like this:

What if I have a reaction?  What if I can no longer tolerate them and have to live with horrendous acid reflux?
Well Jak, what if you do?
But I can’t live with horrendous acid reflux!
You might have to.
But I CAN’T.   It’s too painful!
You haven’t tried PPIs before, maybe you can tolerate those instead.
Yes, you’re right, maybe I can.
So if you do become allergic to the H2s again, there’s always the option of the PPIs.
Yes, I’m comforted by that.

By which time at least half and hour has gone by, and I realize I’m not having a reaction and I breathe a huge sigh of relief and get on with my day.  It is tiring though, living with that level of fear and having to be strong and give myself a stern talking to every day of my life.

The thing about worry and fear is that, for the most part, they are absolutely futile.  Worrying about having a relapse won’t stop me having a relapse.  Worrying about having anaphylaxis won’t stop me having anaphylaxis (in fact mast cells love stress, so it actually increases my chances!).  When I first got sick I worried about money, but here I am two decades on and I’ve managed.  I worried when I dumped my boyfriend that I’d be lonely, and I am at times, but at others I’m glad I’m single and can do my own thing – I honestly don’t think I would have made the recovery from M.E. I have if I were still in a relationship because other people’s needs take too much energy.  I worried when I was diagnosed with hEDS that the illness would progress and I’d end up in a wheelchair, and the illness has progressed and while I’m not in a wheelchair yet I am a mobility scooter user and I cope.  I worried when I was ill-health retired from work that my life was over, yet here I am still meeting new people and doing new things and if I’d been working full-time I would have been far too busy to take up photography, without which my life would lack passion.

It’s natural to worry but you can’t let it take over your life.  None of us, healthy or sick, knows what the future holds.  I bet the day PC Keith Palmer went to work he didn’t expect to be stabbed to death by a terrorist.   Living each day as it comes is all we can realistically do.  If it’s a good day we cherish it, if it’s a bad day we do our best to get through it, knowing that tomorrow might be better.  After a decade of being bedridden I never thought I’d be driving, walking, owning a dog, writing a blog, have moved house, be winning awards for photography……..or be happy.  In the bleak, dark, wee hours of my worst nights I never imagined for a second that I’d be living a rich, fulfilling, joyful life……….yet here I am.  Anything is possible.

Medicine for the soul

My family invented the word dysfunctional.  You have no idea what my childhood was like and it’s a wonder I survived with my sanity.  Having said all that, one of the reasons I did survive with my sanity is because my parents are funny.  I don’t mean they need their own comedy show, just that even in the blackest moments they can say something ready sarcastic that just makes me laugh and it’s medicine for my soul.

Even now, when my relationship with my Mum is somewhat strained, we still share humour.  It’s a very northern, dry, sarky humour which usually involves swearing, and that not even all British people understand, but it gets me through the day.

I’ll give you some examples:  when I was horrendously ill with M.E. I weighed under 6 stones (80lbs) and just being touched was painful.  I was crying one day and my Mum gave me a tight hug.
Me: ‘I can’t breathe Mother’
Mum: ‘At least you’re being quiet, that bloody wailing was getting on my nerves’
Me: ‘So you’re basically trying to kill me to shut me up?’
Mum: ‘Is it that obvious?’
Me: ‘Where’s Ester Rantzen’s number, I’m reporting you to Child Line’
Mum: ‘Will Ester Rantzen cuddle you when you’re upset?  Noooo!’
Me: ‘Well at least she won’t try to murder me’
Mum: ‘You’re so bloody ungrateful’ 😉

My parents do the Lotto – Euromillions on a Friday and the UK Lotto on a Saturday.  This is Sunday morning’s conversation:
Me: ‘Did you win the lotto?’
Mum: ‘Oh, we haven’t checked it yet, pass us the tickets’
Me: ‘OMG we could be multi millionaires and we don’t even know it’
Dad: ‘What’s this “we” business.  You’re not getting any of it’
Mum checks the tickets: ‘I’ve got one poxy number’
Me: ‘What bloody use are you?  I wasn’t born to be poor.  I need parents who can keep me in the manner to which I’d love to become accustomed.  I wonder if it’s too late for me to be adopted?’
Mum: ‘Your Dad and I have been asking the same question for the past 30 years’ 😉

When I leave their apartment, my Dad will shout after me: ‘Be good!’
Me: ‘I’d love the opportunity to be bad but I’m too bloody exhausted!’

Us discussing Dad’s dementia and whether he should be driving:
Dad: ‘I agree, going through a red light isn’t the best’
Me: ‘Yeah, it is pretty dangerous.  You could kill someone’
Dad: ‘Or damage the car and it’s only 12 months old.  Would that be covered under warranty?’
Me: ‘What?  The killing someone or the dent in your bonnet?’
Dad: ‘The dent obviously, even I know you can’t claim back on your insurance for running someone over stupid’ 😉

In every day life I come across some seriously miserable people.  My next door neighbours are two of the most miserable gits on the planet despite the fact they have a wonderful life, and my elderly neighbour on the other side is one of life’s ‘glass half empty people.’  I went to visit her on Sunday afternoon.
Mary: ‘Oh it’s lovely to see you, it’s been a long, quiet day’
Me, feeling sorry for her: ‘Have you not seen anyone today then?’
Mary: ‘No’
Then a bit later on in the conversation she mentions her daughter & her husband, who live down south.
Me: ‘Oh, so you’ve seen them recently then?’
Mary: ‘Yes, they’ve been staying with me this weekend’
Me: ‘When did they go back?’
Mary: ‘About 10 o’clock this morning’

I really struggle to get my head around miserable, negative people.  Obviously there are days when I can’t see the positive in anything, which is normal and understandable, but the majority of the time I can always find something to smile about, even if it’s just telling Bertie he’s gassing me with his smelly farts and that if he doesn’t stop pumping I’m sending him back to the Rehoming Centre 😉  And I’m always pleasant, no matter how much pain I’m in, how little sleep I’ve had, how nauseous I feel or how exhausted I am.  I always take the time to smile and say hello to anyone I meet, even if the very last thing on earth I feel like doing is making small talk.  However, there are some people who live in my village who, if they were to smile, their bloody skin would crack and who grunt “morning” at me with their heads down.  And one of my postmen has a face like a slapped arse.  What sort of a way to live is that?  Grumpy bastards.

A smile costs nothing and being able to make someone laugh is one of life’s greatest gifts.  My parents may have fucked with my head as a child to such an extent I needed medication and 2 years of therapy to get over it, but I will be forever grateful that they also made me laugh until my sides ached.  If you have people in your life that light you up with laughter be grateful.

The Blame Game

A friend shared a blog post with me the other day.  It was brilliant, so I’m linking to the post below (I couldn’t find a WordPress share button).

“Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase” by Camilla Laurentine.

Luckily in the UK we aren’t quite as conspiracy-theory driven as our friends over the pond (well, apart from when Princess Diana died!) and if I’m honest we find some of the rhetoric about drugs over there a bit crazy.  I’m with Camilla, the blog post author, on the whole “big pharma” thing.  Drugs have kept my Mum alive for the past 4 years.  They keep my lovely little dog (almost) pain free.  I would personally give my left arm to be able to take proper antacids, painkillers and muscle relaxants, let alone anti-inflammatories, anti-histamines and migraine preventatives.  I face an osteoporosis riddled old age as I can’t tolerate HRT.

My ME went from bearable to I-wouldn’t-put-my-worst-enemy-through-this-nightmare awful after having a holiday vaccination, but it doesn’t make me anti-vaccine.  Vaccines have rid the world of smallpox and almost eradicated german measles, polio, diptheria, tetanus and a range of other killer diseases.  I had the german measles vaccine as a kid, yet still got german measles.  Obviously it was a very potent strain that year and without some protection from the vaccination I was told it would have been so bad I might have died.  Girls in the UK are now being vaccinated against HPV which reduces their chance of getting cervical cancer in the future to almost nil.

I’m sure both drugs and vaccines could be made safer, but let’s not chuck the baby out with the bathwater.  We lived for millennia on herbs and ‘natural’ medicine and it was for the most part ineffective and killed people – there’s a reason drugs were needed and invented.

Again in the UK we’re lucky enough not to regularly face the ridiculous opinion that all physical ailments are caused by unrepressed emotions.  Genetic diseases are determined in the womb, and airborn viruses don’t care how you’re feeling when you breathe them in.  I find this whole notion so ludicrous I can’t even put it into words so thankfully someone as eloquent as Camilla has done it for me.

I watched an episode of ‘Real Housewives of Beverly Hills’ this week where the girls were nearly all agreeing that the cause of Yolanda Foster’s illness must obviously be her unhappy marriage and that now she’s getting divorced she’ll recover.  Are they out of their tiny minds?!  She was happily married when she succumbed to Lyme Disease – it was the resulting ill-health from Lyme which caused her marriage to disintegrate, as it does for many relationships, not the other bloody way round.  I find it incredible this group of supposedly intelligent women can’t just accept she was infected by Lyme and there is no effective treatment – it’s that simple.

It seems to me we, in the West, are just spoiled.  We think nothing bad should ever happen to us or, should it happen, it should damn well be fixable.  We simply can’t accept that shit happens, it can happen to anyone and it’s no-one’s fault.




May is both M.E. Awareness month and Ehlers-Danlos Awareness month (there is no Mast Cell Disease awareness month as far as I know, not yet at any rate).  It’s pointless me trying to raise awareness of these diseases through my blog as it’s read by people who, for the most part, already have or know someone who has these diseases, so I thought I’d share with you what having both M.E. and EDS has taught me.  It is not an awesome or inspirational list, just random stuff not all of which is positive.  But then being incurably sick isn’t a positive thing and anyone who says it is is a big fat liar.

So, here we are in no particular order:

There are worse things than dying.
Being tortured for every second of every day for nearly a decade, with no social, emotional, practical or medical help of any kind was hell on earth.  I totally understand someone with cancer refusing their third round of chemo, even if it might cure them.  There’s only so much suffering a person can take before death is preferable.  I’ve been there and if I thought I had to do a single week of that suffering over again I’d top myself.  Death no longer scares me which is good considering it’s unavoidable.

I am stronger than I ever thought possible.
I survived a shit childhood, emotional abuse, horrendous bullying, poverty, homelessness and abandonment.  I then survived a decade of being bedridden, tortured, neglected, medical abuse, victimization, disbelief and solitary confinement.  I now survive chronic pain, isolation, increasing poverty, continued medical neglect, victimization, disability and disbelief.

Not only did I survive all this, I survived intact.  I still love my world, I have self worth and self esteem, I try not to let anger consume me or direct my actions, I still have huge capacity for empathy, joy and love.  I am not perfect and I like myself despite my imperfections.  For the most part I am kind to myself and accept my bad days, outbursts, crying fits, despair, frustration and anger without judgement – if other people want to judge me I suggest they live a day in my shoes then decide how they’d cope.  I define myself – I do not let my experiences define me or my happiness.

Having said all that you don’t live a life like mine without it affecting you and if I waded through all my emotional baggage I could be in therapy for the rest of my days – thank God I can’t be arsed 😉

I don’t sweat the small stuff.
The trivial shite that people in the developed world get hung up on gobsmacks me.  Botox, plastic surgery, obsession with large breasts, perky backsides, false nails, fake tan, weight, cellulite, what car they drive, how big their house is……….get a goddamn life you shallow, self loathing arseholes.

‘Stuff’ does not make you happy.  People do not make you happy.  Being wrinkle free does not mak you happy.  Happiness is a state of mind, it’s a choice.  It stems from humility, gratitude, connection and love of self.  I am grateful to my illnesses and my experiences for teaching me this most important of life’s lessons.

I’ve got to be honest though – if I had a choice of not being sick all these years and being shallow and miserable, or being sick all these years and being happy, I’m fairly sure I’d choose health and misery.

There are worse things than being alone.
I had my first boyfriend when I was 11 and  I wasn’t without a man until I was 30.  I’ve now been single for 18 years, and lived alone for 24 years.  It has its pluses and it has its minuses.  I never thought someone as needy for affection and approval as me would ever manage to be by myself for any length of time.

I never doubted I’d manage practically, as all of the men I’ve dated have been bloody feckless when it came to looking after a home or themselves for the most part.  I also never doubted I’d manage financially, although it’s been and continues to be a huge struggle.  I’m just amazed I have managed to find joy and happiness despite my solitude.

Like I said in my flying solo post, I’d rather be happy alone than unhappy and part of a couple. For any of you out there in miserable relationships life is too fucking short to live under that kind of stress – the only thing worse than being physically sick is being both physically and emotionally sick.

People don’t really care.
It’s a hard one to accept, but if you’re not going to get better most people just lose interest.  For the most part this includes medical staff, shocking as that sounds.  They have finite resources and concentrate those on people they can actually help.

I was angry about this for a very, very long time then I just let it go.  I am incurable.  Worse, for the most part I am untreatable.  This is where acceptance comes in and it’s tough to accept that you’re kind’ve on your own with your pain and suffering and that there’s realistically nothing much anyone can do.

As a child if I fell over I’d go crying to my Mum who would hug me, bathe my knee, put some Germolene and a plaster on and send me back out to play.  In our sub-conscious mind we kind’ve expect this as grown-ups and it comes as a shock to discover not everything is fixable with a cuddle and a bandaid.

It’s also easy to be hard on friends and family for ignoring us or not accepting our limitations, but they’re just people.  They have insecurities, flaws, busy lives.  They can just be downright insensitive, uncaring, judgemental dickheads.  When I was healthy I didn’t give a toss about anyone but myself if I’m honest and certainly wouldn’t have spent any of my precious spare time with a sick person who couldn’t even go out the house or do anything fun.  It isn’t a judgement on them any more than it’s a judgement on you.

Of all of the above.  So incredibly liberating and enabling and something I was lucky enough to learn fairly early on in my journey.  Acceptance does not mean giving up, far from it – if I’d given up I would never have been diagnosed with EDS or MCAD.   But for me accepting every aspect of my diseases has been crucial to living my life with gusto, peace and joy.  It is what it is.


I had a total meltdown this morning.  I woke up perfectly normally, wrote my chatty Weekly Roundup blog post, took Bertie out on my scooter as the dog walker doesn’t work weekends, and was poddling along when a car drew up next to me.  I live in a tourist area and vehicles often stop to ask for directions so I wasn’t expecting this conversation:

That wasn’t very hygienic!”
I was taken aback and then realized the head poking through the car window was a lady out of my village.
“Er, excuse me?”
“Your dog just peed up the egg box!”
The farmers put their boxes of eggs in large plastic containers by the side of the road and you put money in a tin box if you take any.
“Did he?!  Oh, I’m sorry I didn’t see or else I would have stopped him.”
“Don’t deny it.  I just saw him with my own eyes!  And you can see the pee all over the box!”
“I’m not denying it.  I just didn’t see him.  I’m really sorry and wouldn’t have let him do it if I’d seen him.”
“I get my eggs from that box.  It’s disgusting to let a dog pee up it!”
“I’m sorry, I didn’t know he was doing it.”
“It’s really unhygienic!”
“I apologise.  I’ll go and get some cleaning stuff and wipe it off.”
“Lots of people get their eggs from that box, how d’yer think they’d feel if they knew your dog had peed up it?”
“I’m really sorry, I’ll clean it up.”
And she drove off without another word.

Now I know Bert peeing up the egg box wasn’t right, but there are ways of speaking to people and this wasn’t the way.  It really shook me up.

Bertie is a tiny dog.  This incident took place a mile from my house and I know that Bert’s pee runs out only a few hundred yards up the village.  I’m not doubting he cocked his leg, but I was doubtful anything actually came out of his willy.  However, I turned my scooter round and went to the farm in question, knocked on the door and explained what had happened, apologising profusely and offering to clean up the pee.  The farmer couldn’t have been nicer and said his own dog pees up there, that’s what dogs do.  And it’s a plastic box so nothing inside would be affected by anything on the outside of the box.  However, to reassure me he went and inspected the box and said it was bone dry and I was worrying unnecessarily.

So on our way home I knocked on the door of the lady’s house who had shouted at me, explained what I’d done to rectify the situation and reassured her Bertie hadn’t peed on the box.  I was rewarded by her massive black Labrador shooting out of the house and attacking Bert.

As you know, I’m not a big cryer.  It’s pointless when you live on your own.  There is no-one to wipe away your tears, no-one to hug you better and no-one to reassure you everything is going to be alright.  In my world, crying solves absolutely nothing.  However, after this morning’s incident I had a total meltdown.  I couldn’t stop myself.  I barely got through the back door when all the anguish, stress, anger, pressure, anxiety and sheer exhaustion of the past few months overwhelmed me and I plopped down in a big heap on my hall floor, still wearing my waterproofs, anorak and wellies, and simply sobbed.  And sobbed.  And sobbed.

I’m fed up of being lonely.  I’m fed up of having no-one to talk to.  I’m fed up of being skint.  I’m fed up of having to be strong, all the time.  I’m fed up of never being touched let alone hugged.  I’m fed up of having no help, of having to do every single little thing on my own no matter how ill or exhausted I am.  I’m fed up of being anxious.  I’m fed up of caring for my parents when I have 3 brothers who do absolutely fuck all.  I’m fed up of pretending to the world that I’m not sick.  I’m fed up of being sick.  I’m fed up of being in pain.  I’m fed up of being exhausted.  I’m fed up of the boredom which makes up a large part of my day. I’m fed up of Doctors who don’t give a crap.  I’m fed up of receiving no care.  I’m so tired of the fight of my existence.

I don’t want to go out for lunch tomorrow with my parents.  My Dad talks shite and I have to treat him like a 5 year old, making sure he’s seated, doesn’t wander off, order a drink for him, take him through the menu and order his food for him, tuck his napkin in his shirt because he spills everything down his front, try and include him in the conversation even though he can barely follow anything that’s being said.  I don’t want to listen to my drunk Mum, slurring her words, repeating every she’s already told me 5 times and expecting me to act like it’s the first time I’ve heard it, not being able to follow the conversation, either finding everything funny or finding everything irritating and snapping at me and Dad, having to order her meal for her cos she’s not capable and knowing all the while that every single word I say she won’t remember by that evening, and we’ll go over every conversation again on Monday.   It’s exhausting and stressful and absolutely no fucking fun whatsoever.  And I have to sit there pretending like I’m having a nice time.  I can’t do it.

So I rang my Mum and told her I’m not going with them for lunch tomorrow.
“Do you want me to be honest Mum?”
“I do.”
“Because I can’t cope with your drinking at the moment.  I don’t want to cope with it.  You’re not my Mum when you’re drunk.  You’re putting incredible pressure on me and I’m struggling to cope with it on top of everything else.” All said very calmly and without blame.
“What if I promise not to drink tomorrow?  Will you come then?”
“I don’t know Mum.  I think I just need a break from being around the situation.”
“I promise I won’t drink tomorrow.  Please say you’ll come.  I really want you to.”  And so starts the emotional blackmail.
I said I’d think about it and let her know.

I now have a headache and still feel weepy.  The meltdown came out of nowhere but just shows the strain I’m under and all the stuff I bury so that I can keep functioning.  I’m sure I’m not alone in that.  Thanks for listening x


The Change

I’m acutely aware that I’m in a period of transition.  We talk a lot these days about teenagers, their hormones, moods and worries and the allowances we should make for their behaviour.  We talk endlessly about pregnancy and childbirth and the fact that our lives will never be the same again.  We also talk a lot about the elderly, their often increasing isolation and frail health and whether they’re receiving appropriate care.   What we don’t talk about, it seems, is the Menopause, at least not in public – it’s kind of the last taboo, yet it’s something every woman will go through and is as life changing as puberty.

Being chronically ill doesn’t stop us from going through all the same life events as healthy people.  What it does do, however, is make it harder.  Sometimes much harder.

Menopause can be rough – physically, psychologically and emotionally – even for healthy people.  We sweat, flush, can’t sleep, are nauseous, weepy, angry, exhausted, have palpitations, never know when Aunt Flo will arrive and our brain and memory go awol.  At the same time it happens at an age where we’re often looking after elderly parents or hormonal teenagers, grieving the death of our parents or facing ’empty nest syndrome’.  Whichever way you look at it The Change is just that……a life changer.

I never thought in a million years I’d be sitting at the age of 48 Googling “my elderly Mum is an alcoholic”.  There’s never been any kind of substance abuse in my family and it’s all new and scary.  The result of my search was confirmation of something I already knew………that I can’t change her, or cure her, or particularly help her.  But what I can do is help myself.  And I think that’s pertinent for all of us women of ‘a certain age’.  If society refuses to even acknowledge the toughest 5 years of any woman’s life, then we have to look out for ourselves instead.

We have to make sure we have hobbies and interests, particularly if we have children who are leaving home.  We need the distraction, the opportunity to meet new people and to have new goals and passions.  We have to make sure we have ‘down’ time, even if it’s just a soak in the bath for an hour with a good book or lunch out with a friend each week.  We have to learn to say “no”.  No Mum, I won’t paint your windows but I’ll gladly arrange for a decoarator to come and do it for you (which is the conversation I had with my Mum this afternoon!).  And all this is doubly, triply, important when we’re sick ourselves.  There are no medals for working ourselves into the ground taking care of others.  We too have lives to which we’re entitled.  To leisure time to which we’re entitled.  To time off to which we’re entitled.  And we’re also entitled to not feel guilty about any of it.

When we’re ill ourselves we simply don’t have the physical resources to be able to take care of others in the way we, or they, would like.  What we are often good at, however, is employing others to help – we’ve had to do it in our own lives which places us in a good position to help others.  My Mum’s cleaner quit recently and it took me all of 5 days to find a replacement.  She needs some plumbing work done so the plumber is going next week.  She wanted some new doors which were ordered and hung within a fortnight.  And all because these are people who have done work for me in the past because I can’t do it myself.  Being largely housebound I do everything online – groceries, shopping, banking.  And now my parents are unable to do these things it’s been fairly easy to do their groceries, shopping and banking online.  We sick people have skills we don’t even think about and which come in really handy when caring for others.

I’m finding middle age is a time to set new boundaries, both for myself and the people around me.  To recognize that my life is altering, I’m facing new challenges and responsibilities, and that I need to look at how well I’m adapting.  I’m finding a new maturity and re-evaluating my life and whether or not it’s meeting my needs as well as the needs of those I care for.  It’s a work in progress but so far I think I’m doing OK.

Today I finally feel like a grown up.  Even though I’ve lived independently since the age of 21 I’ve still always felt like someone’s daughter.  I’ve always had my parents for back-up, support and advice.  And it’s no longer there.  Now they turn to me for back-up, support and advice and it’s taken a lot of adjusting to.  But I know I’m up to the Change.