It's not all doom and gloom y'know.

I think I've given you all the impression that being sick is 90% doom, gloom and staying in one room so I thought that now was the time to set the record straight.
I'm naturally a glass half empty kind of gal, but I really do try to see the glass as at least trying to be half full. With chronic illness it really is all about how you look at it, I'm sure you've all had a few of those moments where you can either laugh or cry, well being chronically sick and fairly young it's basically like that all the time. Trust me there are plenty of times when your options are really cry or really really cry, but isn't that just life, wether you're sick or not?
To get back to the laughing part then I'd like to introduce to what I think is one of the funny symptoms of my crazy body...hiccups. I don't mean regular, garden variety, have a glass of water hiccups. I mean diaphragm spasms of a colossal scale for days on end. Seriously, days. I work with kids who find this hilarious and with adults who find it infuriating, when exactly do hiccups stop being funny? (apparently it's not 22) When these ickilycups, as my grandad calls them, first begin I do the grown up thing and keep my mouth closed to avoid sounding like a bull frog at the back of the room however, these are sneaky hiccups. They'll stop for a little while, just long enough for you to think that they've gone and its safe to open your mouth then, BAM. Bullfrog. Another funny thing about them is that they make my whole torso move, forget trying to eat or drink, the real challenge is in not looking like I need an exorcism every 5 seconds or so.
Next up is a word I'm slowly coming to turns with in regards to myself...clumsy. The thing with clumsy is that I could have been diagnosed and therefore helped a lot earlier if I haven't been written off as clumsy since birth. Buy, wether I like it or not, I am hilariously clumsy. I literally can't walk past a door handle without smacking into it, I even use plastic dinnerware and my cups have lids and straws though I still manage to spill them. I could cry that I use a sippy cup (not literally, that's just what I call them...although they would be useful) at 22 and try to disguise them in an adult way or I could use them with pride and only purchase children's versions featuring various film and cartoon characters. Which would you do?
 Meals out ate just a disaster zone, my first date with my husband started with me spilling pop down my top on the bus there and then pasta sauce on my jeans, only to finish when chocolate sauce drips down my top (I hated that top anyway) thank god he found it funny too!
At the minute I'm trying to teach my beautiful puppy DPT or deep pressure therapy. If you've ever seen an assistance dog lay on their owner this is probably what they're doing, it's a way of providing pain relief through warmth and pressure, think about when your muscles ache after five a side and you rub heat gel into it. She does it of her own free will and has done since I got her but she doesn't always do it when asked, resulting in some pretty funny situations. Her favourite at the minute is to sit on my face...not helpful, especially in public. Another favourite is to become a parrot and sit on my shoulders, which in most dogs is an act of dominance but is an act of randomness for my pooch. I could get annoyed and frustrated that she doesn't do what she's told all the time and embarrasses me in public, or I could just laugh and give her a cuddle anyway. It's not a hard choice.
I know all this positive thinking malarkey sounds a bit daft but honestly, give it a go. Just make a list of everything in life that's pretty good right now, even little things! I'll do a few to start you off:
- icklycups
-random clumsiness
-bizarre dpt training
-bath bomb glitter getting everywhere
-jazzed up living aids
- sick kid perks of free lip gloss etc.
-nothing shuts down a-holes like the disabled card
-ableism bingo
-the cost of living aids is hilarious
-getting to sit pretty much wherever you want
-sick kid community
-colouring books
......

Yes you have a degree, you're not a genius.

It's reached that point of my life now where my peers are graduating with fancy degrees and becoming fully paid members of professional societies, whilst I am happy for them I am not happy at all about the recurring theme lately of "poor little Leanne."
Alas, dear reader, I have never studied in those hallowed halls nor have I racked up a substantial debt which directly correlates to my blood alcohol level. I gained early acceptance at two different universities and was all ready to take my place amongst the fresher throng when tragedy struck and my life was tipped upside down.
I was too busy battling for a diagnosis and learning not to walk like a dinosaur to think about going to lectures or writing essays. I didn't even finish my first two attempts at college life and while I am far from a genius, actually not that far according to my mensa testing as a child, I am certainly not stupid.
Yet these freshly graduated morons seem to think I am, they have conveniently forgotten how many times I have beaten them at scrabble or helped them cram revision in at 2am, in order to treat me like a simpleton.
Unless I have forgotten everything I knew in the four years they have been at University then there really is no need to explain their language, describe what their degree is in or generally talk to me like a toddler. In fact, I have worked with toddlers and I wouldn't have spoken to them the way I am spoken to.
So here is a message to everyone, degree or none. We're not idiots, we know things you could never imagine, we experience more hardship in a day than most people will in a lifetime, we may never have letters after our names but we are bright, strong and valuable. We neither want nor need your pitying words, it is a shame that some of us didn't get to follow our plans but that is our issue to accept, not yours to pity.
I'm not a fool, don't treat me like one.

Could you smile through this?

Okay so here's how I know that my physical health has a direct and significant impact on my mental wellbeing. I'm often told that being ill is no excuse for being miserable and 75% of the time I agree, I know some bubbly people who face terrible physical adversity, but when the world hurts you how can you be happy?
Today the world is painful for me.
Lights are too bright, even with sunglasses on an overcast British day I'm squinting.
Every sound feels like its boring into my skull, the sounds most people don't even here are crushing me, I can hear the buzz of the lights like a banshee is screaming in my ear.
My own skin feels like sandpaper, the softest clothing I own is burning my skin, tearing chunks out of my flesh with barbed wire.
My three layers are no defense against the mild weather currently freezing my extremities and turning my joints into iced over pits of hell that click, burn and throb no matter what position they are in.
The vibration of the bus, while usually a slight annoyance, is coursing like lightning through me, ripping my nerves to shreds.
That's without all of the muscle twitches, pin and needles, headaches, jaw pain, knee pain, swollen joints, fatigue, brain fog and the general feeling of destruction in my day to day life. With all of this going through my body how am I suppose to feel happy? Or grateful? Or even anything other than a deep desire to crawl into a warm, dark place, curl up in to a ball, or as much of a ball as my unflexible joints and muscles will allow, and die.
could you?

Mental health wording survey Pt 1

Over the past couple of weeks I have published a survey about the wording the general population use regarding mental health problems and the responses were surprising from the beginning. I'm not a data analyst or a specialist in any way at all, but I'm going to attempt to analyse the results to try better understand just what is acceptable, anger inducing or upsetting to the mental health community. I'm going to do this in installments so it's not such a daunting read so bear with me and I'll be as quick as I can, for those of you who stuck around for the AtoZ I promise to not take months this time!

 We are constantly told that it's 'time to talk' but as a nation we are terrified to do so, I am not ashamed of my problems but I often feel that other people are ashamed for me. Words are whispered around us in case we spontaneously combust if we hear the word depression or schizophrenia, heaven forbid someone actually says the words mental illness.

The first thing I noticed, and something I found quite interesting, was that nearly all of the respondents were female. 86.4% in fact, with only 4.5% being male and 9.1% identified as other ( agender, trans etc.) This may be because of the outlets I used to promote the survey or it may even be that men just don't like surveys, however I feel that this is due to men generally being more uncomfortable with these sort of 'emotional' issues, for example if I see a male doctor about depression they are usually very fidgety and desperate to get me out of the room whereas the female doctors are much more open to talking about it, most men just don't seem to do feelings and I wonder if this is a cultural thing that men aren't 'soft' about emotions or if this is actually a biological factor. Back in the day men would hunt and gather and provide for the family, probably spending most of their time away from the home whereas women were literally bred to look after the home, the children and the elderly. Perhaps evolution has desensitised men to emotions.

I also asked those who felt comfortable to tell me their age, sexuality, ethnicity and job as I expected there to be a large trend in the results especially with age. However, I can find absolutely no trend whatsoever in any of them, I'm sure someone much more qualified than me would be able to, but to my untrained eye there is no significant difference at all. I thought that the older generation, older than mine that is as I am Generation Y, might be a little more free with language my generation wouldn't think of using. I always think of us as more accepting and liberal in general but I suppose I underestimated older people, sorry. 

Invisible costs.

Bring chronically ill means you have to do some things a little differently but, not always in an obvious way and that tends to really throw people off.
I get a taxi to the next village over every morning to catch my train to work, it's about a 5/6 minute drive and most people walk it but, that's simply not an option for me. I have tried it once, it took me over an hour and I was in agony for days. Although my friends and family know I can't walk long distances they still suggest I walk it, someone mentioned cycling once, whenever I complain that my taxi was late or too expensive. All a lot of them see is the wasted money because that's £5 a day I could save by walking. What they don't realise is that I would pay five, ten times that if it meant I could work at a job I love and feel like a 'normal' functioning member of society.
Other little costs are things like trousers. I can't wear denim or scratchy, non-stretchy fabric like it so buying trousers that don't look like they were designed for a grandma can be a real pain and usually I have to travel to certain stores and pay extra for cotton jeans. My coat is a ski jacket which cost me a fortune, not because I love skiing, but because its very insulated and getting cold is painful.
All of these little costs add up to making a spoonie life so much more expensive without even taking into consideration the big costs like travel to hospital visits (£300 to the specialist on the train).
When people whinge about chronic illness sufferers claiming benefits like PIP or DLA because they say we don't have any extra costs like 'real' disabled people then I wonder if they have ever considered all of the little invisible costs adding up and taking their toll on our income.