Tag Archives: isolation

What you don’t get is…

My friend and fellow blogger Lindsay’s latest post over at Musings of a Dysautonomiac was about the difficulties she faced on a small trip with her family and the effects of this on her health.  It made me think about all the things that healthy people enjoy and take for granted but which are no fun for me and devastate my life.

I haven’t been on holiday since 1996.  For a start I can’t afford a vacation, but on top of that a holiday is supposed to be fun and relaxing and something you come back from refreshed and raring to go, only it’s not like that for sick people.  It’s hard work, makes you even more sick and you need a month in bed when you get home to claw back your energy and regain the equilibrium that you have lost.

Over the years I’ve had the occasional request to go on holiday from friends and they’ve simply not been able to grasp why I’ve said no.  “But all you have to do is sit in a car, sit on a plane and sit on a beach!” is usually how the conversation goes, to which my reply while they roll their eyes in exasperation is “I’m just not well enough”.

But what I’ve actually wanted to say is this:

“So I don’t have to find someone to look after the dog, take his bedding, his food, his bowls, his towels for his muddy paws, his lead, his medication and his poo bags to his new pad, remembering to leave the vet’s number just in case his spine finally gives way.
I don’t have to pack.
Travelling in a car doesn’t make me horrendously motion sick, dizzy or cause me endless torturing pain.
Airports aren’t noisy or busy, don’t pound my poorly brain and I don’t have to stand endlessly queueing.
There are no bugs circulating in the reconditioned air on the plane which will inevitably make me sick as a dog and not affect anyone else.
The sudden heat and humidity of being in a hot country won’t make me feel like road kill.
The change of water and food won’t set off my mast cells or my stomach problems.
Spanish hospitals are going to know what MCAD is when I inevitably have anaphylaxis, or what hEDS is when I dislocate some joint I didn’t know existed.
I’ll be able to find low histamine foods in a Spanish supermarket or ask the Hotel to provide them.
My bed will be comfortable, and allow me to sleep pain-free, with only 2 thin pillows and a plastic covered mattress.
I won’t be eaten alive by insects and end up covered in massive hives.
My migraines will take a fortnight off.  Ditto my hormones.  Ditto my pain.  Ditto my dysautonomia.  Ditto my fatigue.
I won’t have to stand in a long queue at the buffet table every night for dinner and eat it sitting upright at a table, when I usually eat reclining in my bed.
You won’t expect me to stay awake past 4pm in the afternoon and be up all evening, even though I usually go to bed every day at 4pm and stay there until the next morning.
You won’t want me to walk by the beach, go on a trip or swim with you in the sea.
While I am in bed waiting for you to come back from swimming in the sea, walking by the beach or from your trip I won’t be bored because there will be an English speaking telly to watch.
I won’t feel isolated, depressed and invisible lying in bed waiting for you to get back and listening to the rest of the world outside my window having fun.
You won’t expect conversation on top of all of the above.
I won’t get back home to a pile of washing that I no longer have the energy to do.
I didn’t spend the last foreign holiday I had in a Mombasa hospital close to death and it didn’t give me PTSD.

I’m in!  Sign me up.”

But of course I don’t say that, because they wouldn’t get it if I did.  Packing to them is no big deal, the airport is exciting and their holiday will leave them feeling great.  There can’t possibly be any comprehension of how hard it would be for me, how left out of everything I’d feel while they went exploring or swimming or drinking, or how long it would take me to get over the trip once we got back.   So I just say no and end up looking anti-social and like I’m not up for having fun.  Again.  Even though I’d give my right arm to have a fortnight away from the prison which is my bedroom and to have 2 weeks off from my diseases.

To add insult to injury, having said no, I then have to look at their holiday snaps on Facebook and ‘Like’ their post, even though I’m jealous as hell and hate them for being well and taking for granted all that they have and can do.  In fact, if they knew how much I actually resented them we wouldn’t still be friends.  And then I hate myself for wishing my diseases on them so that they’d understand my life just for one day.

I’m at the stage now where I’m resentful if I’m asked to do stuff I clearly can’t do, and resentful if I’m not asked and left out altogether.  In fairness, my healthy friends can’t win no matter what they do which is why I’m so grateful for my sick friends, none of whom are going on holiday or to concerts or on days out to the fun fair either.   They make me feel less like an alien living in a foreign land and more like I’m part of a community to which I belong.


Low patch

On top of my weekly roundup on a Sunday I try and write one blog post a week on a specific topic but the last few weeks I’ve been struggling.  I’m usually a gobby mare who never shuts up but the truth is I’m feeling a bit low at the moment and can’t think of anything to say.

I’ve been lying here pondering what’s really going on and I think I’m just feeling a bit lonely.  As I said in a recent blog post, during the winter everyone else is stuck indoors like me but in the summer it’s very obvious that healthy people are out having fun with their nearest and dearest and the fact I’m imprisoned in bed on my own feeling rubbish really hits home.

I’ve been single now for 10 years and while in many respects I love being on my own the lack of human contact seriously gets me down.  I have not been touched by another person in a decade and we’re simply not meant to live in that kind of isolation.  We have an innate need for physical connection – someone to hug us when we’re upset, someone to hold our hand when we’re frightened, someone to kiss us to share in our happiness.  The absence of that is something you never get used to and can, at times, become an actual physical ache of longing.

It’s bad enough that you have no-one with whom to share your life.  There’s no-one to ring when something great happens, no-one to care for you when you’re injured, no-one to help with chores when you’re exhausted, no-one to discuss Love Island with 😉   But for me the lack of physical contact is the thing which brings me to my knees.

There is no solution either.  I mean, you can pay someone to help with the housework or the garden and I do have my parents and friends I can chat to, but you can’t pay someone to lie and snuggle with you or to sneak up and kiss you on the neck when you’re doing the washing up.   You can’t pay someone to hold your hand while you’re waiting for an MRI scan or to massage your shoulders when you’ve got a migraine coming on.

So I apologise if I’m a bit quiet.  I’ll get over it, it’s not like I have a choice, but just at the mo I’m having a bit of a pity party and the only guests are my rampant hormones which are making me weepy (when are they going to bugger off?!).  I can’t even get drunk and binge on chocolate, which some days is worse than being alone, or dance to It’s My Party And I’ll Cry If I Want To cos my knees are playing up.  Fucking hell my life actually sucks 😀



Bring me sunshine

It’s summer here in the UK and for once it’s living up to its name.  Trust me when I say that up north that doesn’t happen much – it usually just rains a lot and is warm(ish) for a month or two before going back to being winter again 😉  But this year we’re having a heat wave, and it’s glorious to feel the sun on my parched skin and breathe in hot air scented with the lavender which lines my garden path.

It’s also very lonely.

I’m in bed by 3pm nearly every day and as the afternoon sun streams onto the sheets I can hear the world continuing around me, oblivious to my absence.  Children playing.  The whine of lawn mowers.  Snippets of conversation as neighbours chat over garden walls.  The smell of bar-b-qs wafting on the breeze through my bedroom window.  Faint music rising from sun dappled gardens.  Clinking wine glasses, droning insects, the Pennine fells bathed in orange glow from the setting sun.  And me where I always am………alone here in my bed, with my dog and the telly for company, wishing I was out there too.

Most of the people in my village think I’m more than a bit strange.  They know I’m ill but the fact my illness doesn’t take the odd day off now and then, especially on a balmy summer’s evening, they find a tad anti-social.  I’m not included in the calls to “pop round later to down a beer with my name on it” not that I could go even if I were.  No-one tags me in a merry stupor on Facebook for the rest of the neighbours to see.

It’s nights like tonight when I’m acutely aware of my isolation and I have this huge ache in my heart to be out there, mingling, laughing, chewing the fat over world events, slumped in a garden chair with my bare feet on the cooling grass.  Drinking wine.  Being normal.   Just…..being.

“Full many a flower is born to blush unseen
and waste its sweetness on the desert air….”
Thomas Gray, Elegy Written in a Country Churchyard