"But You Don't Look Sick"

This post is about my experience of living with "invisible" chronic illness, as an attempt to shed a bit of light on day to day life, for friends and family that don't necessarily understand that much about my condition. I'm writing this for me and my fellow "spoonies" (see link later on), who get frustrated with hearing the phrase "but you don't look sick". Those of us that have a chronic illness are well aware that there are people in the world that are worse off than us - we just want to share our experiences for better understanding.

One thing that I should say is that whilst I have friends with the same condition, our day to day experiences can vary as we don't all have the same combination of symptoms, at the same severity, at the same time. I also have friends with different conditions that I share symptoms with. The main thing that we all want, is to try and enjoy life as much as we are able, and to not be treated with disdain when we need to make changes to "normal" life, even when we don't obviously look unwell.

My example below isn't every single day in my life, but it's an example of some of the things that people with ME/Lupus/Fibromyalgia/Chronic Fatigue or similar deal with throughout a flare up. When we're not in a flare up, we still get a lot of the symptoms in some combination or other but they might be less severe, or last for shorter periods of time.

A key thing to know about people with a chronic condition (whether mental or physical) is that on a day to day basis, we're pretty damn good actors. We are great at putting up a façade - pretending we're fine when we're not, or that symptoms aren't as severe as they are. By the time the rest of the world notices that we look a bit tired or off-colour, we've most likely been battling a flare up/crash for days, if not weeks. That doesn't (necessarily!) mean the rest of the world is crap, we're just used to having to cover up how we're feeling.

So -  imagine you wake up in the morning feeling like you have sawdust in your eyes; with the aches and "walking through treacle" fatigue of flu; the massive over-sensitivity to light and sound that comes with a migraine or a heinous hangover; the soul-destroying depression of the worst day of your life; the palpitation-inducing anxiety about losing your job if you do what you need to do and take a day off; whether you ought to give another reason for calling in sick such as food poisoning so you don't get judged as a blagger for taking another day off related to a condition few people understand.

Imagine that it takes literally every ounce of energy that you have to open your eyes, drag yourself out of bed and walk to the bathroom to wash, brush your teeth and make yourself vaguely presentable. You're running on empty already as you didn't get to sleep til the early hours despite being exhausted as you couldn't find a comfortable position to lie in and your brain was working overtime. You should have left the house about 20 minutes ago but didn't manage it so now you're running late for work.

You struggle through the day trying to be your "normal" self;  not be grumpy; not end up in tears through pure exhaustion; stay awake at work; remember to do all of the stuff that you're supposed to do throughout the day; try not get too frustrated with yourself when your brain cannot manage to get the simple words from your brain to your mouth despite talking about a subject you know inside out due to brain fog (you can find out a bit about brain fog here.)

Your muscles are desperately tight so you think that maybe a bath might help relax them when you get home. You run a warm (not hot) bath, and gradually add hot water to help your body adjust to the temperature. When you can get out of the bath, it then takes you about an hour and a half of being bright red in the face and sweating to cool down (by which point you need a shower!) as your condition means you struggle to regulate your temperature.

You've been invited out by a friend that you love dearly and haven't seen in ages. You love laughing and putting the world to rights with them and it's only a night in with a film, not a major night out and clubbing. But it's taken all of your effort to cook yourself something vaguely nutritious to eat; and the thought of putting anything other that your super-soft pajamas against your easily irritated skin makes you feel nauseous (find out more about Allodynia here). You don't want them to think that you don't care about them or don't want to spend time with them, you're just literally at the end of your tether and don't have the energy to keep the mask in place. So you grovellingly apologise for having to cancel once again, and hope that you still continue to get invited to stuff despite having to cry off or leave early on a relatively regular basis.

You may well know someone that swears that eating avocados "cured" their chronic illness; who found that hugging trees evaporated their severe pain; who swam with sharks and miraculously lost their insomnia. Which is fab for them, if somewhat unlikely. Just tread a little carefully with the "miracle fixes" you quote, as most people with chronic conditions have had them for several years or longer (quite often enduring medical professionals/friends/family/partners telling us that it's all in our heads) before finally getting a diagnosis. We have therefore had to discover our own coping strategies - which will work some times, and not others. And often the only thing that you finally get from the doctor is painkillers, which bring their own side effects that then have to be dealt with.

So what can you do to help? Be understanding. Don't judge us when we have to postpone an event; when we sometimes need to walk with a stick despite only being in our twenties or thirties. If we're not up to going out, see if you can come to us and curl up on the sofa under a duvet watching films. Are you cooking a roast or something yummy? Bring us a doggy bag when we don't have the energy to cook more than toast. Offer to help us change our duvet cover when it's taken all of our energy to get dressed and get presentable for the day before we even think about doing chores.

You can find out more about fibromyalgia from lots of sources but some of the most reliable are:

www.nhs.uk/conditions/fibromyalgia/

http://ukfibromyalgia.com/what-is-fm.php 

http://www.fmauk.org/2-uncategorised/52-what-is-fibromyalgia

Click to find out more about the The spoon theory.

So, that's a whistle stop tour of fibromyalgia & similar conditions. Not to whinge, not to say that we have it worse than anybody else, just to give you a little snapshot of why we sometimes have to cry off on social events or are not at our best.

We're still your friend, partner or relation. We still love you and enjoy spending time with you. We have just learnt (and often it took us a long time to do so!) that sometimes it is better for everyone else as well as ourselves if we put ourselves first and take time out to recover.

"Good morning" weirdos

I am aware that there is a strange subset of humans known as the "early bird". I have come across them in many settings throughout my life and yet I still fail to understand them. These are the creatures that choose to get up early even when they don't absolutely have to; that often get up willingly before their alarm goes off; that go to the gym or for a run before breakfast; get a load of washing done and out on the line and prep the evening meal before leaving for work. These people are what I like to call freaks of nature.

As you may have guessed, I am not a morning person. I never have been, and never will be and that suits me fine (apart from the fact that I don't have a trust fund and therefore have to drag my sorry bum out of bed each day to go to work!). You are exceptionally unlikely to hear the words "good morning" out of my mouth unless I am talking to a customer at work. I'm not completely anti-social, I utter a "morning" or "hi" to my colleagues on arrival at work. However, other than that, I like to reserve "good morning"s for those days where I get to have a lie in and wake up to Alexander Skarsgard or Charlie Hunnam bringing me tea and bacon sandwiches in bed.

As for doing an hour and a half a the gym or founding an NGO before breakfast? Pfffft! Even before I got diagnoses of two health conditions that affect my sleep and energy levels, I was never a morning person. I consider it a major achievement if I leave the house in the morning fully dressed with my clothes the right way out; with teeth brushed; hair vaguely tamed; and arrive at work by 9am. Consuming breakfast and/or remembering to pick up what I need for the day before I leave the house grants me extra bonus points.

I'm not talking about the fabulous souls that drag themselves out of bed to arrive at work pre-dawn to provide us with essential support such as the emergency services. Because knowing several people that work in those kinds of jobs, it's their job satisfaction that gets them out of the bed, not the joy of meeting the dawn! And they are my heroes.

I can remember many weekend mornings when I moved back home when I was 19ish when my Dad felt that I should be awake and greeting the world, and therefore would come and check whether  I was up by about 8am on a Saturday or Sunday. "Don't want to be wasting the day in bed", he'd say (or similar). Well, I've already said "hi" to the dawn on my walk home after clubbing, going back to a friend's after consuming post-club pizza, and going for a paddle in the sea at stupid o'clock in the morning - so sod off and let me sleep!!!

However, having dated someone that was a real morning person, it does have its uses. I may have groaned when he got up at 7am on a Saturday morning to go out for a cigarette. But whilst I was disappearing back into sleepy land, he was mainlining coffee and cigarettes and left me in peace for a while. And if I was really lucky, I'd open my eyes an hour or so later and a cup of tea and bacon sandwich would appear in front of me.

So you strange creatures, you do have your uses. But don't expect coherent conversation or co-ordination from me until I've been out of bed for at least an hour and a half. And don't expect normal levels of sarcastic humour until approximately 10am on a weekday - maybe 11am on a Monday.

I'm never going to be happy to be out of bed before about 10am, but bringing the grizzly bear buckets of tea and bacon sarnies is a good way to help tame the beast into a vaguely interactive human being!

Do you have that in a size "human" please?

Those who know me will know that I do not fit the stereotype about women supposedly loving shopping, specifically clothes shopping. Soft furnishing shopping? No problem. Ikea? No worries (especially as there are meatballs and chocolate in the cafe at the end to look forward to). B&Q/Wickes? No problem. But clothes shopping? *Shudder*.

It's not just down to the fact that most changing rooms are my idea of hell - ridiculously warm, rubbish lighting, small cubicles, entirely unflattering mirrors, the queues (don't even get me started on the fresh hell of communal changing rooms), but they certainly don't help. I'm sure that lots of changing rooms are designed to be so unflattering and uncomfortable to put you off trying things on - I think they're hoping you'll remember the unpleasant experience from last time and just buy things hoping they'll fit and if they don't, you won't be arsed to come back and queue up to get a refund. Which either means that we end up with clothes that don't fit and/or suit us in our wardrobes for months or years without them seeing daylight or, more preferably that charity shops get the spoils.

We'll leave the amount of pink clothes or sparkly princess or unicorn related b*llocks that appear in girls' & women's clothing departments for another soap box on another day. My biggest bug bear is the cut of clothes. This rant is for the ladies out there as I'm not a bloke therefore I can't comment on the perils of trying on men's clothes (nicking boyfriend's/husband's/male friends' jumpers doesn't count) and quite frankly, women have more "ins and outs" to fit than blokes do!

Given that the anatomy of the human body has been known for quite some time, the issue with the cut of clothes flummoxes me. Women have always had boobs, bums, hips and waists. Granted, we're the proud owners of many other body parts too, but those are the key places that can be a complete pain when trying to find clothes that fit and flatter. Back in the day, women were lauded for their curves or "womanly figures". These days, it seems the fashion gurus can't decide what they want us to to be.

On the one hand, the Kardashian physique is allegedly currently desirable - bubble butts, tiny waists and big boobs. Well that's just fine if you've got designers just queuing up to make things to your exact specifications. However, the vast majority of us mere mortals buy our clothes in shops. And if you can find say, trousers big enough to fit a bum that even vaguely sticks out, you can bet your arse (fnar!) that clothing companies are going to assume you've got a big waist too. Then you have to make a decision - do you buy size down so it fits your waist and hope to hell that your hips/bum aren't going to split the seams - or do you get clothes fit your hips/bum and have enough space to put two cushions down the front of them before they even vaguely fit your waist?

And boobs? Holy hell, we're all meant to have a good rack, but finding clothes to fit an average or worse still, above average cup size means buying at least a size up from your regular clothing size to have a hope of not "busting out all over". One job I had insisted that females wear shirts every day rather than just smart tops. Without having to buy "specialist" clothes from sites catering exclusively for large busted women and paying through the nose for it, I think my biggest "size-up" was four clothes sizes bigger than my normal clothing size in a shirt to accommodate my chest.

Fantastic, this meant that I didn't flash my bra at unsuspecting customers or blind anyone by spraying them with buttons off the front of my shirt. However, I could have rented the back of my shirt out as a marquee. Not the best look but perhaps I should have gone along those lines and got a bit of extra money for doing up my house. FYI girls with big boobs, Marks & Spencer's now sell shirts that are your normal size but with extra "frontage" that are the same price as their "regular" shirts.

I was lucky when I was growing up in that I very, very rarely got bought trendy branded clothes due to budget constraints. Now, in some people's eyes, that's a bad thing, and there were a few odd things that I really craved. However, I consider myself truly blessed because my Gran was a very talented seamstress. This meant that every year my family had a unique wardrobe of clothes in material and styles that we liked. Every year I had the perfect "mix and match" staple wardrobe. And more importantly, that fitted me perfectly.

Sadly, I don't have a tenth of the skills that she did, so I just have to make the best of the limited sewing ability that I do have to try and get high street clothes to fit by taking tucks in them. Just one of the hundreds of reasons I miss her.

I know that this is a topic I will return to several times as there's so much to get on my soap box about. And there will probably end up being an entire post dedicated to "frontage" :)

It ain't what you post it's the way that post it

I always find it interesting reading other people's blogs/web pages - especially personal pages.  I think you can tell a lot about a person by the tone and nature of their blog posts and I love the glimpses into other people's psyches. If you haven't figured it out already, mine's fairly cheeky; I don't take myself too seriously; and am a passionate advocate for people/issues I believe are important.

I understand that there are more "professional" blogs designed for a specific audience and whilst they might not be my bag, there are obviously some people out there that have an interest in the particular topic - whether that be gaming, fashion, celebrities, make up etc. I'm sorry, I can't get excited about the latest shoot 'em up to hit the market or the latest diet fad - but if it interests you, fill your boots. I get that there is a big market for fitness and diet related material. I know some people are obsessed with the gym and how many calories are in a mouthful of fresh air - but really, life is too short! By all means eat sensibly and do some exercise to try and keep fit and healthy. But "fitspiration" is definitely way more healthy than "thinspiration". Be inspiring, don't make other people feel bad about the fact that they've not got an 8 pack or guns the size of a warship!

There genuinely is a blog called "The dullest blog in the world". Why?????? It's obviously a p*ss take, but - why spend your time posting a few lines a day about the fact that it occurred to you that you moved your door mat because it wasn't straight (yes, that's a genuine post). There is also a blog called the "Most Boring Blog in the world". I'm not prepare to waste my life looking for other contenders but I can confirm that they are both pretty damn boring and in my humble opinion, pointless.


The partial inspiration for this post was watching the movie "The right kind of wrong", which is about a guy whose ex-wife writes a blog about him called "Why You Suck" which basically criticizes everything down to the most minor of his character flaws. She starts off just sharing the blog with friends and family, but then goes public and becomes a media sensation resulting in pretty public humiliation. It’s a romantic comedy, and there are some pretty implausible points in the plot, but it did get me thinking.

Why do some people feel the need to broadcast (and feel justified in doing so) the intimate details of a relationship far and wide, or BS about things that didn't happen to make themselves feel better - whether during or after the relationship? I've been through a divorce that got really nasty and had crap spread about me. Tempting as it was to start a war of words about the BS & things they'd done during the time I'd known them - that's just not me. If anyone asked/asks outright what happened I'm honest about my flaws as well as the other parties' but despite everything I wouldn't broadcast their hopes/fears/darkest secrets.

Possibly because of my sense of humour, but definitely due to the fact that I don't have an Instagram-perfect life and am quite good at taking the p*ss out of my own life fails, I am much more interested in blogs about those with imperfect lives than those boasting about how fantastically perfect their worlds are; how high flying their careers; which high profile people they hang out with; how rich they are etc.

It may also have something to do with the fact that I'm good at making an arse of myself either intentionally to make people laugh, or completely unintentionally embarrassing myself in front of people that I either fancy, or need to impress (or both)! Luckily, I don't take myself too seriously so don't get all self righteous when my so-called friends and loved ones p*ss themselves laughing at my misfortune.

A small selection of blogs written by humans "keeping it real" that make me think as well as smile:

My Imperfect Life
The Ugly Volvo - a parenting blog but it covers loads of random topics. The link is to a post that made me smile.
Damn you autocorrect - General auto-correct fails, always good for a quick smile.
Soon2becatlady - I can relate to so many of her posts about the horrors of "dating".
The travel tart - Irreverant travel blog.
Danielle Vanier- For those of you interested in all things fashion, especially for people that exist on more than coffee and cigarettes - please check out the awesome Danielle's blog. Inspiring and cheery.
Medicinal Picnic - An open and inspiring account of how real life ain't perfect, but we're all trying our best!

A 'lol' a day keeps the hankies away

 

They say that laughter is the best medicine. I'm in two minds. I'd put it joint first with music - but that's a topic for another day. 

Let's face it, the world is going crazy at the moment and picking up a newspaper, listening to the radio or even just watching the news headlines can be pretty depressing. It can easily get a bit overwhelming. I don't even want to think about the possible impending nuclear holocaust that is currently hanging over our heads thanks to two dudes with very bad hair and attitude problems.

I'm all for standing up for what is right, and taking action when it's required - I sign my share of petitions, lobby for things that I believe in, and try and keep reasonably up to date with current affairs. But sometimes you have just got to have some down time from "real life" to try and maintain a modicum of sanity (I did say a modicum of sanity, you don't want to be 100% "normal", that's boring). I'm not advocating complete radio silence from the real world but I would suggest that muting it every now and again is good for the soul.

Whether it's watching old episodes of friends, rebooted "Red Dwarf", "Mom", "Saturday Night Live", "Suits","QI" (educational as well as chucklesome) or *shudder* "The Big Bang Theory" (not my thing, but whatever floats your boat); or a funny film or radio show - fill your boots giving bad news the finger. It'll still be there waiting for you when you've finished crying with laughter - you might just find it a little easier to put into perspective.

Whilst I can highly recommend watching your favourite sitcom or comedic film; or reading a silly website, comic strip or book; some of my best times (and sorest stomach muscles) have come from seeing the funny in the every day. Laugh at yourself; laugh at people that take themselves too seriously; laugh at the yoga guru that farts when she's doing a plank; laugh at the guy that thinks he's God's gift to woman when he trips over his feet because he's too busy making eyes at someone. But laugh, dammit - life is short and no one gets out alive.

Laughing is not going to magically make all of the crappy things in the world go away. It's not going to get you your dream job (OK, if you want to work it comedy, it will certainly help, smart arse); it will not make you win you the lottery; or provide a solution to world peace. However, laughter releases feel good chemicals. People that are feeling positive are less likely to be gits to other people. Thus, it could, directly and indirectly make a positive difference to people near by you, or people that you are never going to meet.

A small selection of the studies that have taken place regarding laughter and its effects on your health are:
UMM laughter study
Psychological bulletin
Alternative Therapies
Laughter Yoga & Organ Transplants


If you want a dose of the news but without getting completely depressed - may I suggest The last leg. If it's not currently on TV, there are loads of clips online and they have a Facebook page. It will keep you up to date with the weekly news but will royally poke fun it; make you feel less hopeless, and laugh a lot! You could also try The onion or Daily mash for satire that can make you chortle.