That’s Italian for ‘Frustration’, according to Google. Things sound better in Italian. Well, declamations – vocal gestures etc. etc. I’m as far away from the stereotype of an effusive Italian as you can get. I’m very Saxon. Though I do get passionate in my speech and I do swear without apology. Frustration will usually have me spouting ‘BALLS!’ loudly. ‘Balls!’ is a nice sonic thing – a thump of sound. Like a Rhino. It feels good and very ‘manly’. Today should have been full of such sounds, but I’ve just been too damn tired. But not too tired to spare you, fair reader. In stereotypically British style, we shall start with the weather.

London last week was cold and windy – like November. I have no problem with that. Windy, when you’re in the roof* is dramatic. And it’s very ‘alive’. So windy: ok. Even the unseasonable cold was fine. However, at the Weekend, Summer decided to happen, and  my body went into shock. Poor Body, hating the heat. I sweat, a lot. I can’t concentrate. I become extremely slow moving and I can’t get comfortable. It feels like my body is swelling and pressing on my organs. My chest hurts or wildly bumps and clangs – heart and blood and all the noisy things are extra noisy. Gradually I seize up. And if the heat lasts long enough, the joints start to hurt. And it’s an amazing hurt. You would yowl, but it would both do no good and make you even more tired than you already are. A hurt and an ache you can’t rub or medicate away. In my case it hits my knees first and gradually works it’s way in both directions towards my feet and hips. Anywhere you’ve injured beales and old wounds wake. It’s one of two pains that can keep me conscious. Me, who can sleep for 26 hours straight. Ice doesn’t work and I’d bite anyone who suggested heat. You just have to sweat and writhe until Morpheus decides to knock you on the head. Last night was ‘sweat and writhe’ – swearing in person and via social media at my stupid knees. My giant, bendy, lumpy, rough skinned knees. The stupid ankles that have never worked. Damn them all! Today, the day after the achy night-before began in misery of a different kind. Of course, I didn’t get to sleep before the Sun was happily up, and I had to take more Ibuprofen than I would like before actually sleeping, so I woke up with the burnt mouth, sore throat and fiery midriff that signify Acid Reflux. Acid Reflux, so popular with TV ad makers – represented to the public by stressed-out over achievers or portly chaps who eat too much steak. Well, I’ve had it since I was 19. I’ve been quite lucky – it saved my life** and it’s stripped the enamel from my front teeth. When it’s doing it’s thing it makes me sore inside and very grumpy – like a colicky baby. I rub my abdomen (between ribs and umbilicus) while rocking back and forth and grunting at people, before drinking some Gaviscon – Advance if possible. I swirl the viscous aniseed liquid round my mouth and over my teeth (to coat them and neutralise the acid) before swallowing.  So picture the slumped over 6ft tired, grumpy baby with slow limbs with a hand full of pills gulping white liquor from a spoon*** – and all this before attempting to wash and dress. My day started in the afternoon and I felt as if someone had put me in a sack and beaten it with sticks. Hence 50% of my frustration.

Yes, only 50%. Here we go.

The other 50%: DWP and NHS letters. You may remember that I had a ESA1 form to fill in and send. Which I did and in time. I was told by a DWP telephone person that if I put my name, National Insurance Number and mobile phone number on my Fit-Note, the DWP would text me when they got it. So far, no text. So I am worried. I’m suffering what many suffer in my situation: a Government Department give you a big form and a deadline, which to strive to get completed properly and send on time, and in return, you wait and wait and wait – you must work hard and do what they say, but they have no need to rush. The NHS letter is a different fish kettle****. At my last ENT appointment I was told to make an appointment for a VEMP test (I have no idea, and I’m not looking it up until I have the date – that way fear may lie). I handed in the form for the test, and was told an appointment would be sent me – nothing so far. I was also told I’d be sent a letter with a provisional diagnosis. I need this for ESA etc. and so I can tell people what is wrong with my ear – knowledge being power and All That Jazz. So far – nothing. My appointment was on the 23rd of May. Last time I had a letter from the specialist 7 days later. I know each time it’s different, but it feels like forever. I know that there’s been a Bank Holiday, but tell that to my Brain as it runs around my head panicking.

So two very different Frustrations: the Weather and Bureaucracy and their affect on me – both of which I cannot control or influence. For many people, being so out of control would cause them severe discomfort. If you have EDS or one of many invisible Disabilities and Illnesses, you have to get used to a lack of control. This does not mean you are happy, that you offer yourself up as a smiling sacrifice to the God of Chaos. This does not mean you don’t want control, that you don’t want a say in how your life pans out. It just means that you have more things you have to accept – like your natural eye colour and if you can wiggle your ears. But it’s not easy. It takes effort and skill*****, and in my case, the freedom to swear like a docker in the early hours of the morning.

*I’m like the First Mrs. Rochester – I live in the loft.

**OK, the Acid Reflux didn’t literally save my life – it didn’t push me out of the way of a moving car. What it did do is play a part in the discovery of my very inflamed, septic Gallbladder which was removed when I was 20. It started with burning teeth, and ended with an emergency operation which saved me from dying of Sepsis. Thank you Prof. Ara Darzi, for not only removing my giant Gallbladder, but managing to do it through a tiny hole in my belly button. With EDS, it’s not only your muscles and skin that are flexible – your insidy parts are too. My Gallbladder was a foot long and had invaded the space left by my Appendix. A Gallbladder should be about 3-4 inches long, not 12.

*** Morning pills: 4 Vitamins, 2 Anti-Depressants, 2 Stomach Liners, 1 Beta-Blocker, 4 Puffs up the nose, 4 Analgesics and a Partridge In A Pear Treeeeee! I also have to use creams.

**** I know it’s ‘Kettle of Fish’, but I do this thing with language in my head. And it makes just as much sense as the original.

*****I imagine hurdling is quite similar. Or ‘The Hunger Games’/ ‘The Running Man’ – that would be iconic and heroic. But there is nothing iconic about getting stuck on the floor trying to put your pants on.

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