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.