Change is a-coming

It’s been a battle in my mind for years: what the hell can I do to form some sort of career, earn some sort of money and feel in some way professionally fulfilled? Traditional jobs are out the question because my illnesses make me too unreliable and even on a basic level, I’m categorically not up to being out the house from 8am until 7pm. Running a business from home, in the traditional sense, is also a no go because whether it’s a service or a product that I offer, I still need to be available to my clients or customers 24/7. There’s a misconception that running one’s own business is all about endless cups of tea and marshmallows but the reality is very different. I can, however, write and create content on my own terms according to my own schedule and that’s exactly what I’m going to do.

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Soon, this website will be dedicated solely to blogging and service and product recommendations for fellow chronically ill peeps and though I’ll still have an “encyclopedia” in place listing chronic illnesses, my research won’t be featured on this site anymore. It’s still going to be an integral part of what Chronic Illness Central offers but the research itself will only be included on my Instagram account, @chronicillnesscentral. In my short time running this, I’ve realised engagement in study-findings and health news is extremely high on Instagram (perhaps because of the convenience) and very low here. The people who visit this site visit pretty much for the blog posts and the blog posts alone so give the people what they want and all that jazz. I’m still committed to finding educationally sound, thought provoking research so I’m not dropping the ball, no worries there. In the new year, my blog posts will be scheduled for Mondays, Wednesdays and Thursdays as it’s important to me to have some routine in place for my readers.

Not content with this and determined to forge a career for myself, I’ve started the ball rolling on ‘Housebound and Chatty’. It can currently be found on Instagram via @houseboundandchatty and at @houseboundchats on Twitter. The website is coming soon and will tie in, both visually and in its premise, with everything I’m doing here. Yes, I’m pretty much glued to my snuggle chair with chronic illness but I still have a hell of a lot to say for myself and very few in real life to say it to so I figured: you’re all there, I’ll talk to you! The plan is to have a weekly topical podcast on both YouTube and other forums like iTunes, Soundcloud etc and I can’t wait for you to join me whilst I yabber on and drink tea. I want it to be friendly escapism for people in the same boat as me or for those who just need a bit of an out that day. Hopefully, things will be kicking off in April. I’m holding off until then as our lease is up on March 21st and if the landlord decides not to renew, money will need to be reserved for sensible things like a deposit and moving truck. All going well though, we’ll be staying put and I can purchase all the equipment I need.

I’ve also decided to jump off the goddamn cliff and just go for it when it comes to putting my writing forward for publication. I’m beyond bloody excited and feel as though this is what I’m meant to be doing. Sure, it’ll be a rough road with a tonne of rejections but it can’t be any worse than your doctor repeatedly not listening to you. I’m tough as old boots me. I know how to pitch, I know how to write and and I know how to write passionately about what I know, believe and enjoy. Hemingway won’t be rolling in his grave but long gone are the days where writing was about what was “proper” and instead, here we are in a time where people are just longing to connect to someone or something.

2018 has a lot in store for me and to be honest, I’m shitting my pants. T’will  be grand though.

Emma x

Don’t be a one-upping, bitter Betty

As I sit here and write, I’m in absolutely bloody searing agony. When I cough, laugh, sneeze or breathe too deeply, I’m punished with a stabbing jab in my gut. My insides feel as though they’re being simultaneously squeezed and dragged out of me. I wake up during the night utterly sick to my stomach and sob for the pain to end. Yesterday, I threw up after doing a tiny bit of planting in our squirrel-ravaged garden. I swear those adorable little shits have it in for me. At least once a day I wonder how the hell I can possibly go on and yet, if Anthony came home from work with a cold, badly sprained ankle or headache, I’d sure as hell try to make him feel better with homemade soup and witty banter.

All too often though, I see members of the spoonie community comment:

– “There she is whinging about a bloody headache when she knows fine well what I go through every day”

– “Oh it hurts, does it? Try having that pain all the time”

– “Try being me”

– “You’ve no right to moan about being in hospital for a couple of days. Some of us spend our lives there”

– “At least you can just take a couple of days off work and then go back to your job like a normal person”

– “Are you fucking kidding me? Moaning about your broken arm when my joints dislocate every day”

Let me be flat out here when I say OTHER PEOPLE ARE ALLOWED TO BE SICK and trying to diminish their health issue or guilt them into shutting up about their pain is, quite frankly, abhorrent. I have to say that I’m yet to see this trait in anyone born with their chronic illness(es) and from a psychological standpoint, I guess that makes sense. Pain has been their normal from birth and so they can never compare their bad days to when they were fine and dandy because they never have been. Those of us #blessed with being struck down later on in life have the ability to look back and think, “Remember when I used to think toothache/bronchitis/the flu/tonsillitis was the worst thing in the world?” But this is my point exactly: it very much was the worst thing in the world because that’s all we knew at the time.

Imagine coming home after a 14 hour day, riddled with the flu, only to know that you’re going to be faced with someone thinking or saying that you should shut the fuck up. Imagine coughing your guts up and puking knowing that they’re rolling their eyes at you because they go through that all the time. Imagine feeling like your version of death and crying because you can’t get an appointment with a doctor for two weeks and having your mum/wife/dad/brother say, “Well that’s what it’s like for me all the time. You’ve had a taste of it now.” It all sounds horrible and downright cruel.

I’m not saying you need to fight past your own pain to the point of no repair in order to be a 24 hour nurse but what I am saying is just don’t be a dick. I’d love to say that in a more eloquent manner but sometimes people just need a good talking to. Christ, I’m getting old. So, offer your flu-riddled boyfriend your hot water bottle, make some honey and lemon tea for your sick daughter and throw together some chicken soup if you’re able. Our community begs and strives for compassion every day so please don’t become the very thing you’re trying to stamp out. I swear it won’t kill you to say, “Is there anything you need?” without pursing your lips. As Luann de Lesseps said…

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Emma x

Birthday Gratitude

Today I reached the grand old age of 29 and aside from the frustration evoked by the two people who chose to question me on when I’ll be having children seeing as my clock is apparently now ticking, I’m feeling generally warm and fuzzy. FYI #myvaginamybusiness

Pre-illness, birthdays were spent downing £3 pints of Fosters, doing too many Jagerbombs and shimmying in a gay bar, minus any inhibitions, to ‘I’m Every Woman’ as a drag queen told me how fabulous my boobs were. Thankfully, my knockers are still top notch but the rest of me has ironically gone tits up. Birthdays now are much more about waking up and just being delighted if it’s a low pain day and I can shave my legs. Only up to the knee, mind you. Who the hell are these women with hairless thighs? I digress, apologies.

As I sit here waiting for our new sandwich toaster to arrive (I’m absolutely wild), I thought it would be lovely to have a wee think about what I’m grateful for on my 29th birthday because while I want to rip out my insides most days, there’s still a hell of a lot of good in my life.

Patsy

That’s right, I’m mentioning my dog before my boyfriend. They’re actually even Stevens but if Patsy gets wind that she isn’t at the top of my list, she’ll fart on my face while I sleep. Queen P, as she is also known, is my bosom buddy and I’d be utterly lost without her. I could write thousands of words about why I love her so very much but I’m totes emosh right now while we go through the rigmarole of finding out whether her cancer has returned. I’ll know much more tomorrow but until then: she’s my everything. If I try to write anything else at the moment I’ll need to be heavily sedated to stop me crying.

Anthony

My number one annoyance and my number one support. We’re polar opposites with me being a permanent ball of anxiety…anxiety on steroids…and caffeine. I’m an angry little monkey with buckets of sass and his stupidly mellow, relentlessly cheerful personality is the only thing in the world that can calm me down and make me laugh until I (very almost) pee my pants. He sheds hair like a labrador, covers the floor in a light dusting of concrete (not out of spite, he works in construction), tells me town was busy when I know he spent an hour geeking out at the comic store and never EVER puts his motherfudging shoes away. But…he works 70 hour weeks to support us, makes me a cushion fort like no other, organises the fridge cos it makes me lose my temper and finds my impatience “endearing”. He leaves tiny piles of change everywhere, never gets his bloody tax in on time and I love him to bits. Asshole.

A warm, comfortable home

We don’t own it, the property management company are beyond incompetent and the single glazing lets in a gentle breeze on a windy night but it’s warm, comfortable and filled with things I love. The fuck-a-doodle-do sign is my favourite.

Being a kick-ass cook

No modesty here, hell no. I’m like Nigella on crack. Perhaps a smidgen inappropriate given her prior misdemeanors. I put my heart and soul into everything I make and never follow a recipe. In fact, I followed a recipe yesterday for the first time in a year and it tasted like utter arse. The writer said she loved to feed it to her family. God knows what she’d feed the people she hates.

Trashy/Cosy TV 

Real Housewives of New York/Beverly Hills; Vanderpump Rules; Shameless; Mob Wives; Ghost Adventures; Gilmore Girls; The Office; Everybody Loves Raymond; King of Queens; New Girl; Project Runway; Ladies of London; Grey’s Anatomy…..I could go on and on. I love you all and you get me through my darkest days.

Insta-friends

I’ve lost most my real life friends through illness and I’m very much at peace with that because I’m not going to exhaust myself trying to maintain something with someone who doesn’t want to do the same with me. A handful of ladies from Instagram have taken their place and we sob crying to one another and sob laughing about our wombs and poo. I’d be up a creek without them, mainly because it cracks me up when I get a Whatsapp message at 9am saying, “I don’t know if you’ve ever had this happen with your vagina…”

London

When I’m struggling aka all the live long day, I can have my prescriptions delivered to me, laundry collected or book a home manicure for that night on an app. If I wanted someone to come and give Queen P a blueberry facial in our living room, I could book that too and that’s exactly what I love about this city. It’s ridiculous, covenient and ridiculously convenient.

I’m off to eat more chocolate.

Emma x

Giving Up on Your Dreams to Make Way For New Ones

Around March 2015, I figured out who I wanted to be and, most importantly, who I didn’t. In September that very same year, sickness struck me like a giant, unexpected smack in the teeth. From 2005, life had been unpredictable, stressful and quite honestly…tremendously difficult. My years spent working in retail and hospitality earning shitty money for ridiculous hours had well and truly worn me down and I was in that vicious cycle of living with so many challenges that I couldn’t escape them, no matter how hard I worked and tried, no matter my talent. It’s all good and well being offered interviews here there and everywhere for fantastically exciting jobs but when you don’t have the money to get there or the savings to move if you’re offered the position, you’re well and truly stumped.

Now, while I hate to be the woman who’s all, “A man saved me,” sometimes that’s just the way life works out. Anthony came along like a big blonde-haired knight in shining armour (well, construction gear) and within the blink of an eye, I was living with him in London after his dad drove the two of us and my heavily sedated dog here from southern Ireland. I moved in April 2014 and started my law degree in the September and in the meantime, continued to work in Costa Coffee having arranged my own transfer because the franchise owners I was previously working for paid more attention to managerial bitching sessions than getting any work done. When we realised that I’d be earning exactly the same amount of money from student grants and loans as I would be from tearing my hair out in Costa, we agreed that it would be more sensible to walk away from casa de coffee hell hole, allowing me to focus full-time on such a demanding degree. The long and short of my law school experience (I’d attended as a mature student) is that I was very good at it…and I came to loathe it. In early 2015 I realised that the law was sod all to do with what was morally right and far more to do with who could form a better argument, regardless of whether the outcome was morally corrupt or not. Chuck in the cocaine, sexual harassment and sexism running rampant through the profession (certainly in London) and the whole thing just didn’t sit right with me at all but I felt compelled to continue in case I looked like a failure. Well, in August/September 2015, chronic migraines hit and made sure I had no choice but to leave.

There’s that transition period of learning how to “live” with endless pain and the barrage of other symptoms. For me, it took about six months. Six months to stop waking up in the morning saying, “It’s still there”. Six months to stop agreeing to outings and meet ups only to have to cancel 100% of them. Six months to realise and accept that this was going to be with me for a very long time. But then…..what is your life? While it took me around six months to have all these realisations, the ambition bone in my body just would not let up and was on a 24/7 mission of, “What can you still do anyway?” I came up with many a fantastic business idea that would allow me to work from home and set my own hours. Excellent Emma, except they were all high pressure roles that likely would have seen me keel over and die within 30 days. Christ on a bike, I was determined to open up a recruitment agency for construction workers. Did I have a million ideas that would have made me an unmitigated success in the industry? Yep. Would I have died? Also yep and I refuse for my last words to be, “We will ensure that all passports are verified”.

I was in such a world of pain and yet my personality, ambition and drive were (and still are) coarsing through my veins making it impossible for me to rest peacefully. Hell, I even tried going back to work twice: once as a service coordinator for the biggest plumbing and maintenance company in all of London and then as a night auditor/manager for a four star hotel. Cos, you know, nothing says “healthy body” like a night shift. When I walked away from that second position, I completely broke down to Anthony because I knew I couldn’t work anymore and for someone who had always worked 50+ hour weeks and often had two or three jobs at the same time, this was very hard to admit but continuing on the same, effectively destructive, path was just fruitless and downright stupid.

There’s plenty I have wanted to do or still have a bee in my bonnet about. I always saw myself being a hugely successful business owner doing something that would really make a difference to individuals or to an entire industry. I’m a socially aware, tenacious dog with a bone that can handle anything chucked at her (I’m also incredibly modest) and when I do something, I work the bajesus out of it until it’s perfect and then I make it more perfect. When someone tells me no, I figure out how to turn that into a yes. The only person who has ever intimidated me was Oliver Blunt QC. We didn’t even speak, I was merely observing a court case he was working on and the only reason I was intimidated was because I have an severe girl crush on his daughter, Emily Blunt.

I often see spoonies saying they shouldn’t have to give up their dreams and it isn’t fair the way their life has ended up because they should be able to live just like anyone else. Well, I agree. It isn’t fair. In fact, it sucks donkey balls. Big ones. But, is it productive to spend your life focusing on what you can’t do and what you’ve lost? It’s very difficult sometimes, don’t get me wrong, but that mindset will lead you down such a miserable path for the rest of your days. I’m not saying that it’s easy to get out of that mindset either but counselling or therapy can help considerably. Most importantly though, you have to take a step back and recognise this trait in yourself before anyone else can help you. You shouldn’t have to spend your days feeling forlorn, like a failure or be a misery guts to those living with you because you begrudge what they have or what they can do. Allowing all of those negative thoughts and feelings to eat you up will quite literally make you even sicker.

So, what are my dreams now? Well, we’ll likely be living in London for the rest of our lives as this will be where Anthony’s work keeps us and that’s perhaps going to mean living in a two bedroom flat instead of a three-bed house. Can I still turn that flat into a happy home filled with laughter and trinkets that drive Anthony up the damn wall? Of course. And you know…..that’s about it for now. It might sound simplistic and naive but a happy home can be the basis for so much more and with chronic illnesses being as unpredictable as they are, I’ve learned to stop planning quite so much. However, having let go of the dreams I had previously, I’ve made a whole tonne of space for new ones and they’ll happen when they happen. I might indeed end up making a full recovery and finally become Melanie Griffiths in Working Girl or things might stay exactly as they are and my achievement will be running a home to allow Anthony to do his thing uninterrupted. Who knows. Just don’t let the anger of what could have been eat you up and if it is, speak to someone.

Emma x

Faker Faker Big Fat Faker

Are you really, truly chronically ill or are you 1) faking it or 2) milking a moderate illness or symptom in every way you can? I’m sure you’re thinking, “Who the hell does this bitch think she is?” but the harsh reality is that these are the confronting questions being raised about the spoonie community of late and I’m not one to shy away from saying what others are thinking. Lolcow, a brutally honest discussion forum, has been responsible for kicking things off. The all-anonymous members participate in conversations that challenge the health claims of particular indivuduals and, once they’re convinced they have a definite faker on their hands, pick apart their supposed “journey” day by day, analysing any new social media posts and picking holes in their story. That sounds like bullying 101 doesn’t it? PLOT TWIST! Many spoonies are gradually, cautiously coming out in agreement with some of the sentiments behind it.

“We should be building each other up instead of tearing each other down,” say some folk and perky sorority sisters. In case you hadn’t guessed, I’m not perky. Minus perks. Anywho…it’s all very well being jazz hands supportive of one and all but how will you feel when you realise that the actions of some of these milkers and fakers are actually making your own life with chronic illness a whole lot harder? To be clear, I am not referring to and will not refer to any of the individuals discussed on the forums because that’s not the point of what I’m trying to get across here. A witchunt is dangerous and could lead to spoonies with very real pain and suffering wilting away in silence through fear of sharing a single struggle. What I ask you to do is to have a strong awareness of the three following types of spoonies:

1: The 100% genuine spoonie who lives with severe pain and other distressing symptoms. They have their moments, their breakdowns, but on the whole they tend to “get on with things” to some extent. Their Instagram feeds will have a bit of variety between brutally honest posts when they can’t cope and pictures of their dog or the dinner they managed to make on a low pain day. They’re very much in the community but they have other focuses in life too, no matter how small;

2: The 100% genuine spoonie who lives with severe pain and other distressing symptoms but who is all consumed (sometimes, they’re not aware of this) by their illness(es) or…actually gets a kick out of being sick. These social media accounts tend to be littered with blood pressure readings, pictures of blood tests, IV bags, random bruises and woe-is-me posts that manage to connect any old image to their illness. For instance, the caption under the shot of a cup of tea on a sunny patio will read: “Just tea for me this morning. Yet another day where I can’t stomach food. So jealous of all the kids running around. If that were me I’d throw up.” Obviously we all have our moments but I’m talking relentless joy sucking here. I keep myself far away from these accounts and if I come to realise one is like this, I’m done. I already have enough falling out of my arse without my joy falling out of there too; and

3: The unmitigated, rambling faker. I say rambling because this is exactly what they do. Symptoms become diagnoses because, the longer the list, the more complex and terrifying things appear to naive onlookers. For instance, I have chronic migraines and that’s the diagnosed condition. I don’t, however, announce that I’m also diagnosed with vertigo, tinnitus, cyclical vomiting, situational depression, functional neurological disorder, disorientation, sensory overload and phantom smells (I could go on and on) because these are all symptoms of a diagnosis. Listing them all looks much more impressive though, doesn’t it? The thing is, with such an extensive list of “illnesses”, they begin to trip themselves up and it’s completely inevitable. Sometimes it takes a year, sometimes 5. Many of them are so intelligent though and so utterly invested on being a successful sick person that along the way, they manage to fool doctors into giving them meds they don’t need and innocent onlookers into donating money from their own pockets for unnecessary holidays, trips, experiences and high-tech equipment for their home. Just FYI, there are plenty of genuine fundraising pages but deciphering which is which is a tricky matter.

The first group is filled with the people you want to surround yourself with. They’ll cry to you on the phone and you’ll cry when you’re struggling too. Equally, you’ll both pee your pants laughing (probably literally) at just how ridiculously shit things can get. You’ll celebrate small victories like baking a cake or going to the supermarket and discuss the plans you have in place for when you get a hold on your symptoms. You keep a sense of hope, even if it’s a faint glimmer. The second group will listen to you cry…but then they’ll start crying and forget why you phoned in the first place. You’ll be guilt tripped if you tell them you’re feeling good because you managed to go to the cinema for the first time in a year. “Oh, lucky you…I can’t go at all because it triggers my migraines.” If you faint having bloods drawn, they faint and crap their pants. The second group are soul suckers but the final one is downright dangerous and damaging to those struggling just to function with chronic pain. They mean we have to fight even harder to be heard because they’ve presented with symptoms that don’t add up to their willingly busy lifestyles (I’m not talking about employment) of gigs, gallery visits, afternoon teas and fortnightly nights out on the lash. When a doctor is repeatedly faced with nonsense, they naturally become more suspicious and cautious and while that isn’t right, it’s simply human behaviour and instinct. Whilst previously we would struggle to access morphine for our 9/10 pain, we now face intense questioning if we start to ask about something even weaker. You see, Fakey McFakerson has already been prescribed slow release morphine or fentanyl patches several times but each time she gets them for her bizarre symptoms, she immediately manages to go to Majorca or Alton Towers. When this is reported back to the doctor (because McFakersons always slip up with what they share verbally or on social media) they think, “Well Christ she can’t have needed it that badly,” and immediately become more suspicious of others. And those who desperately need financial help on GoFundMe or the like? Well they’re overshadowed by dollar-seeking sycophants who tell lengthy tales of woe in order to raise £10,000 for a “much needed” holiday. I genuinely recently saw someone who claimed they had Fibromyalgia, a viciously painful condition, trying to raise £7k so she could go backpacking for the “spiritual release”. I saw a pig fly over my house that very same night.

Do we know for sure who’s faking? Unfortunately no. Should we err on the side of caution with who we follow, support and build spoonie friendships with? Damn straight. I definitely wouldn’t advise that you go into every encounter suspicious and waiting to be proven wrong because you’ll miss out on a hell of a lot of lovely people, gems of society. You could also potentially be accidentally quite transparent in your suspicuousness and make a truly unwell person feel like crap. What I’m saying is trust your gut and do your own research to make your mind up when you can’t quite put your finger on something. In the long run and on the larger scale, it’s the only way to protect your own health needs and the needs of genuinely ill people at large.

Emma x