This morning I had to sit in a room and explain to a complete stranger, in graphic detail, how my illness affects my every day life, whilst he tapped away on a computer, in order to asses whether I am "disabled enough" to continue to receive extra money and keep my blue badge. Having to talk about my life out loud, having to calculate just how many days are spent in pyjamas that should have been washed 3 days ago, having to tell a complete stranger how many times a week I feel well enough to shower, and feeling sick when I tell him that it is only 4 days out of every 7 on average. Realising that I haven't been to the supermarket in nearly a month, and to church in nearly three. Admitting that I take sleeping pills every night in an attempt to stop myself from having to get up three time to empty, knowing that this in itself is a risk to my bedsheets.
Telling him about leaks, and admitting to myself how rarely I am able to cook a meal from scratch because it is just too exhausting. Hearing my mother talk about how upsetting it is for her to witness me falling asleep mid conversation. How I have to wear make up every day to cover the black pits under my eyes. Telling him that I spend a third of my time unable to do anything, only to have my mum interrupt and tell him that I am being conservative, and actually it's more like 50 - 60% of my time.
Breaking down in tears when he asks about my life before illness and he remarks how full and busy my life used to be. Having to calculate how far I am able to walk unaided, and feeling exasperated when I try to explain how futile that calculation is, because on the days when I am "well", I could get around a supermarket, but there is no knowing when the bus will hit, and when it does, I need help to get back to my car. Explaining that on bad days I can barely lift my head off my pillow, so on those days I can't walk at all, so yes, I am immobile (I say a third of the time, my Mum and partner say MUCH MORE). Frightened to mention that I am a member of a theatre group, and that I have managed to get to rehearsals (even though I spend the next day recovering, and two weeks after show week was spent in bed), because that would suggest that I am "well", as everybody knows that disabled and chronically ill people cease to be disabled and chronically ill if they are able to have a social life, or manage a supermarket shop. Knowing that this stranger is not only judging me, but using my words, potentially against me. Knowing that if I am deemed "not deserving" of this extra money, my life will get exponentially more challenging. Coming home, and having to go straight to bed to sleep for two hours, because the whole process was as exhausting as it was humiliating, and waking feeling not a bit refreshed. Feeling pain in my abdomen, and wondering if its because of the stress of the day, because I've spent the day having to talk about pain and fatigue so I'm more aware of it, or if it's just my body reminding me that we are sworn enemies. I spend my life trying to be "well enough". I do my hair, put on makeup, perfect my smile, take my pain killers, and get on with it. A massive chunk of my life is spent pretending to be "well enough."
And now I have to wait for up to eight weeks whilst the Department of Work and Pensions looks at the report this stranger had written about me and how my illness affects my everyday life, to decide if I am "ill enough". "Disabled enough."
It is no secret that I had a major operation in April of last year. If you don't know that I had my rectum removed and my anus sewn shut, then it's likely that you haven't been my friend for very long, because one thing I am not, is secretive about it. It is also no secret that I have been taking very strong prescription pain medication, that I am currently trying to wean myself off. My life is an open book. I share stories, and photos regularly online about what is happening in my life on a day to day basis.
Except it isn't, and I don't.
I share what I want people to know. I post the photos that I want people to see. I tell the story that I want people to hear. I am "open" and "honest" to a degree.
About a month ago, I shared a photograph entitled "Batch cooking". It was of an array of dishes that I had spent the day preparing for my family and a friend who had had a premature baby. There was an obscene amount of food. This photo gained likes, and comments galore. It told a story of a woman who has her shit together, so much so that she can cook 2 weeks worth of food in one day.
That picture also tells another story. The story that I don't tell, don't share.
The story of a woman who cooks two weeks worth of food in one day, because that is possibly the one day out of the month that she will be well enough to cook. So she fills her freezer.
In the past 21 days, I have cooked from fresh, 5 times for my partner and I. Our main evening meals have consisted of pre cooked meals from the freezer (some batch cooked by me, others by the supermarket), take away, sandwiches, cereal & porridge, cheese on crackers, crisps, biscuits, yoghurt, or nothing at all.
My son has a home cooked meal most evenings, however they mainly consist of things that I can take from the freezer and throw into the oven - pre cooked lasagne, sausage rolls, chicken nuggets (home made, batch cooked, and frozen), or pasta with bacon pieces and tomato sauce, always cooked in bulk so he can have it for more than one main meal. Convenience isn't a luxury, it's a necessity. And I have learnt how to make healthy, child friendly, convenience foods, in bulk. I've had to.
My partner is not so fortunate, or well looked after.
It also hasn't been a secret that I have joined Brighton Theatre Group, and I am taking part in a performance of Jesus Christ Superstar, in April.
What I haven't shared is my partners reluctance in my taking part. He was worried, and continues to worry, that I have taken on too much. That I wouldn't be / am not well enough / strong enough to manage the rehearsals and performances.
Of course I fought him on it. Insisted that I was fine. That I was getting better. That I could cope.
He was right to be concerned. Because I am barely strong enough and managing. I am holding on by the skin of my teeth.
Although I am making it to and through rehearsals, and I am enjoying myself immensely, I am also in a considerable amount of pain during and after each and every one. The thing is, I am used to being in pain. On any given day, my pain level ranges from 2/10 to 7/10. EVERY SINGLE DAY. My baseline, my normal pain level, where 0 is no pain, and 10 is unbearable take me to the hospital now because I am about to die pain, is 3/10. This is with two different types of kick ass opiate pain relief that I am constantly on. I am almost NEVER pain free. When I hit 6/10, I take something to help me, otherwise, I just get on with it. Pain is normal for me. I am currently in bed, doing nothing but type, and my pain is at a 4, but I'm happy because an hour ago I was at 6. So yes, I am rehearsing twice a week. Yes, I am taking part in a show. I am also taking OPIATE pain relief before, often during, and always after, each and every rehearsal.
So why am I doing it? Why am I putting myself through it? Because I am sick of simply surviving. I want to LIVE. Sadly though, it hurts to live.
Another non secret is that I am looking better than I have looked in decades. My exterior is banging right now. Curves in all the right places, hair behaving, tummy decreasing. I have a waist. My levels of narcissism are rising at an alarming rate. Constant selfies, flooding your timelines, of me in lovely dresses, off to church. I dress up, go to Church, leave Church, go to my Mum's house, change back into my pyjamas, and sleep on her sofa while she cooks lunch. I wake up, eat, sleep some more, drive home, give my son a light dinner, put him to bed, and go back to bed myself. Every single Sunday I spend from 9am - 12pm looking fantastic. 3 hours. That's it.
In the past 21 days, I have only gotten dressed 12 times. And on many of those days I only got dressed to drive the children to school. Today is Friday. I have been in my Pyjamas since Tuesday. I got dressed on Weds do drop off, and then again, to pick up my son from school. I got dressed today to take my son to the Dr. I got home, put my pyjamas on, and got back into bed. I have had to have a nap every single day this week since Sunday. Why my partner puts up with my lazy ass is anybody's guess. I actually said to my Mum on Sunday how happy I was, because I had managed to get through the past week, Mon-Sun (that day), without having to nap, and managed to get dressed every day but one. I was overjoyed. It felt like I was turning a corner. That was at 11am. By 12.30pm I was snoring on her sofa. I have spent this entire week recovering from the past week's 6 fantastic days.
With all that said, I maintain that I am getting better. I am happier than I have been in years. My good days may not have increased in quantity. I may still spend a third of the year in my pyjamas, unable to function due to crippling fatigue, not able to shower, dress myself, cook for my family, leave the house, often not able to lift my head from my pillow. Even though I often still have to use a commode in the bedroom to urinate, because the stairs are too much for me to manage, even though my partner has to remind me to shower, and to eat on the days when all I can do is sleep, even though my bedroom is often the only room I see for days at a time, my quality of life on my good days is the highest it has been in years. Even though a third of my time I am unable to function, the other two thirds is spent living instead of merely surviving. And through it all, I am happy and full of hope.
Today, my family had its annual Thanksgiving celebrations. It's always a large, joyous affair, with an obscene amount of food, which is only matched by the amount of love in the room. Coming from a large American family, Thanksgiving has always been my favourite holiday. As a child, it was the one day of the year where I could have as many friends as I liked over to play, and we could eat as much cake as we could stand. As I grew older, it became the one day of the year when I knew I would see the best of all of my loved ones. This is because, before we are allowed to eat anything, we all have to say out loud what we are thankful for. Every year, my closest friends and family (this year, a mere 30 of us,) stand before each other and declare what is in our hearts. It's a beautiful thing to be a part of. I spend the week leading up to it thinking about what I am thankful for. Each day I think of more and more things that I want to give thanks for. Each day, I am reminded just how blessed I am.
For the past decade, I have mentioned the National Health Service as one of the things that I am most grateful for. For the past two Thanksgivings, I have given thanks for my Bert, my Stoma.
Today, I didn't. Partly because Bert is no longer with me. He was replaced in April with Ernie. But I couldn't bring myself to give thanks for Ernie, because for the past few weeks I have been seriously pissed off with him (Yes, my stoma is a him).
I have had a rough couple of months with my ileostomy. I fell out of love with it. Ernie is nowhere near as easy to deal with as Bert was.
With Bert, I could go three days without having to change my bag (leaks non withstanding). Ernie wants a fresh pouch every morning.
With Bert, I rarely leaked, and when I did, I caught it before it became a horrendous disaster. Ernie is a sneaky mister, who will throw a leak just for the fun of it, and often I won't know realise it's happening until it's running down my legs.
Bert was a quiet little thing, discreet, respectful, shy almost. Ernie is a loud show off, who will sing the songs of his people at the most inopertune moments, and loud enough for everybody in the room to hear.
I loved Bert. Bert was well behaved, did as he was told, and knew who was the boss. Ernie is a little shit, who never listens, thinks he runs the show, and up until a couple of hours ago, I hated him.
9pm on a Sunday night. XFactor has just finished, I'm a celebrity (not Downton, which I am still quite sad about) was next on the agenda.
The other half stands up, laptop in hand, and starts to walk out of the room. This can only mean one thing - he needs a dump. So I ask him if he would mind if I went in first for a quick bag empty. He graciously sits back down, and I head to the throne room.
"SHIT! BOLLOCKS, FUCIKTY FUCKBALLS."
"What's the matter?" Calls the other half, with genuine concern in his voice.
"I'M COVERED IN SHIT." I scream back.
The next few minuets are spent with me cursing both under my breath, and very loudly, as I try to stem the flow and clean myself up enough so I can find a new bag, cut it, and head to the bathroom for a wash and a bag change.
I exit the throne room to find my other (and at this point, better) half waiting for me in the hallway with a freshly cut bag. As he hands it to me, I know that THIS is love. I also thought that he really should have got higher billing in my "things that I am thankful for" speech of a few hours ago......
I head to the sink, fill it with hot water, look for my adhesive remover spray, dry wipes, black waste bag, stoma powder, barrier ring, whilst holding a sodden, soiled tissue against my abdomen.
I take the bag off. Mess is everywhere. I can hear my other half in the throne room next door, watching a video of a Dot matrix printer "singing" The Eye of the Tiger, chuckling to himself whilst he takes a dump. Meanwhile, I am stood at the sink, trying to clean myself up, while Ernie erupts with stool like Mount Versuvious. As quickly as I am clearing it up, he is pumping it out. Bert never did that. Bert always seemed to know when I didn't have a bag on, and he would wait to "go" until it was safe and clean to do so. Ernie, it appeared, also knew, and decided to have a party. All over my sink, tummy, legs, and bathroom floor. The swearing got louder, and more obscene. It would be quicker to tell you the swear words I didn't scream. My other half, at this point, joked that he was recording me. It was as I was telling him that I didn't effing care, that I noted just how ludicrous the situation was. It was also when I realised that I would much rather be stood at the sink, covered in my own crap, swearing at my stoma, than sat on the toilet, having a dump the old fashioned way whilst watching stupid shit on the internet.
Because going to the toilet the old fashioned way means I would still have my colon. Having my colon means pain, and blood, and disease. It means accidents in public, and extreme fatigue, and joint pain, and swollen eyes, and not being able to leave the house, and not wanting to be more than 10 ft away from a toilet. It means not being able to travel, or have days out with my children. It means spending weeks on end in bed. It means worrying about when the next flare up will hit. Going to the toilet the old fashioned way was awful, and I never want to do that again. For every day I suffer with fatigue with Ernie, I had 10 with my colon. For every day I haven't got the energy to get dressed with Ernie, I had 20 with my colon. For every time I have stood up to find myself covered in my own crap because of Ernie, I had a dozen accidents with my colon. For every day I didn't take my children out
because of my colon, I have doubled the fun times I have spent with them because of Ernie.
As I stood there begging Ernie to stop giving me shit so I could get a clean bag on, I remembered what my life was like before him. So I stopped begging him to stop, let him do his thing, and when he was finished, I thanked him for giving me back my life, and apologised for not thanking him earlier in public. No he isn't as well behaved as Bert was,but he isn't Bert, He is Ernie, and it is up to me to stop complaining and comparing him to his predecessor, and take the time to get to know him, for him. He's going to be with me for the rest of my life, after all.
discovering that you are covered in your own crap because of your ostomy, is seriously rubbish. The alternative though, for me, was far worse.
The sun was shining, the birds were singing, I woke up.
It was glorious, waking up, on my own, without any exterior help. No pain, and no mini voices disturbing my slumber.
I yawn, I stretch, I assses.
Bag change day. Do I have the energy? Yes.
In that case, will I take a bagless shower beforehand? Yes
Children still asleep. What time is it? 7.15 am.
Do I wake them now, or let them sleep a bit longer? Let them sleep, then I can hopefully have an uninterrupted bagless shower, and apply new bag without my three year old trying to poke my Stoma.
Kitchen a mess. Will I clean it? Not now, maybe later?
I head to the bathroom. Turn on the radio, remove my bag and get in the shower.
Heaven.
The hot water cascades over me whilst cheesy pop music plays on the radio. I sing along to Queen's "Don't stop me now", and the lyrics resonate deep inside - "I'm having such a good time, I'm having a ball..." as the water invigorates, stimulates, refreshes and renews. My skin is tingling, my stoma is behaving, I feel alive. I feel well.
The children come down. I fix them breakfast, pack their lunches, get them dressed.
I assess.
It's a beautiful day. Do we walk to school or drive? Drive. I don't want to push it.
Success.
I get through the school run without incident. I have a full day to myself. The sun is shining and I don't feel like shit. The world is my Oyster.
I assess.
Kitchen a mess. Will I clean it? Not now, maybe later.
Living room a mess. Will I clean it? Not now, maybe later.
I sit on the sofa, put my feet up, turn on Netflix.
Hours pass.
I assess.
I have acheived nothing. The kitchen is still a mess, as is the living room. It is still a beutiful day and I haven't taken advantage of it. I have sat on my arse, only rising to eat, piss and empty.
I am consumed with guilt. I have spent the past three weeks doing nothing. The housework has been neglected, along with my personal hygeine and relationship with my fella. Today I was presented with an empty house and no fatigue - the rareset of gifts. The perfect oppertunity to pick up the slack, take the reins, restore some order in the house and do my job. Instead I chose to do absolutely fuck all.
I CHOSE to do fuck all. I didn't do fuck all because I wasn't capable of doing fuck all, I did fuck all because I wanted to do fuck all. And just like that, guilt is replaced with glee.
I assess
My partner will be home soon. Will I have to go to bed early? No, I can stay up and spend some time with him.
My daughter needs dinner. Do I have the energy to cook? Yes.
I turn on the dishwasher, I wash some pots, I make her dinner. I am still feeling well.
My fella returns. He asks me what I did today. My rely - Fuck all. We both laugh.
Out of nowhere, the niggling turns to discomfort, discomfort to pain, pain to agony. Just like that. No warning.
I assess.
What time is it? 8.00 pm.
Can I ignore it? Stay up and spend some much needed time with the Old Man? No. The pain is all consuming and written all over my face.
He looks at me, tells me to take a pill and helps me up to bed.
That heavenly moment between sleeping and waking. The moment when everything is as it should be. Perfect.
Just as your brain is telling your eyes to open, realtiy comes flooding back and it hits you like a wave, and as each memory from the day before consumes you, threatening to drown you in despair, you realise that somethng is different, and that dispair is instantly replaced with euphoria.
You notice that although you feel groggy, you also feel rested. Like you have slept, and that sleep has replenished your energy stores.
You stretch, open your eyes, and wait. Wait for the all too familiar bus to sneak up and knock you into a brick wall. But it doesn't.
Your mind starts to race. Can it be? Can today be the day that your body decides that it no longer hates you? Will you actually be able to get shit done? Have a shower? Brush your teeth? COOK? The excitement is almost too much to bear. You can take your daughter to school, give her a kiss at the gates. Walk home and feel the sun kiss your shoulders.
You get up, still full of energy and now full of hope. Walk down the stairs and into the living room, to find your partner asleep on the sofa. He has selflessly set up camp down there in order to give you sole use of the bed in the hope that you will get the rest that you so desperately need. You hear your daughter stirring upstairs, and just as you're about to tell her the news that she has been longing for all week, that you are well enough to accompany her, you walk into the kitchen and you change your mind.
The eveidence of this latest bout of malaise surrounds you. There is the meal in the slow cooker that was started the day before but abandonded. The dishwasher, open and half full, it's remains remaining on the counters. The laundry - clean and dry on the clothes horse and line in the garden, the rubbish bin - full to the brim, begging to be taken out.
The indignant anger starts to bubble. you feel it in the pit of your tummy. Why has nothing been done? Why is nobody helping? Why does nothing get done unless you do it? And then you hear a snore from the living room. From the man on the sofa. The man who is on the sofa for you. The man who has spent the past week as a glorified taxi driver, taking you to and from appointments, the Doctors, the hospital, the emergency room, the supermarket, your children to and from school, nursery, their friends houses. He has organsied their meals, your meals, washed that laundry that is hanging on the line, wiped your son's bum, taken him to the potty in the middle of the night and ended up covered in piss as a result, watched helplessly as you are prodded, poked, stuck with needles, hooked up to drips, and all the while trying to build a business from the ground up, so you can remain in the house with the dirty dishes and overfilled rubbish bin.
So you take out the rubbish, fill the dishwasher, wash the pots, kiss your daughter good morning, and keep your mouth shut about walking her to school, as she has seen you still in your pyjamas and has rightly assumed that you won't be, and she doesn't mention it, and your heart fills with love and gratitude for the snoring man on the sofa who has done his best to hold everything together in your demise, and pride and admiration for the brave seven year old girl who unsderstands far more than she ever should about your chronic condition.
As you're folding the laundry, you remember the thing that should have sprung to mind the instant the euphoria hit. Your body is a tricky bastard. You may feel full of energy now, but that doesn't mean you
will in an hour or even ten minuets. You have a finite anount of juice, and you have no idea when it will be gone or how long it will last. You have a series of choices to make. Have a shower and brush your teeth, or finish the laundry? Make yourself some breakfast or finish the dinner you started last night? Try and do it all really fast thus expending more energy but potentially getting it done, or go slow and steady but risk running out of steam before the jobs are completed? You sit down, as the inner monologue is exhausting, and the second you do, you regret it as the act of standing up will utilise precious energy thus taking it away from a job already on your list.
The laundry gets folded and put away. A new load makes it into the machine. The ironing will have to wait, what's another few days matter when it's already been five weeks? The dinner is resumed. You can see the bus approaching, and you are almost against the wall. You make your way upstairs and back to bed. As the bus hits, you regret not brushing your teeth.
Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.
Every day, you wonder if today will be the day when you crack. When you drop the balls that you have been struggling to keep in the air. As you open your eyes, still damp from the tears that send you to sleep night after night, you silently pray that this morning will be different. This morning you won't have to coax, cajole, beg, plead, scream, shout, cry and curse. That you won't be left feeling demeaned, humiliated, deflated, defeated, hopeless, helpless, when, yet again, you fail. You can feel your ever hardening heart filling with anger, resentment, bitterness when all it wants to feel is love and compassion. You remind yourself that it is not intentional. But that doesn't make the pain any less real, and the pain is all consuming. It is exhausting. It sends your mind to an unfamiliar place. A place where the sound of your children's voices make you recoil in fear, makes your fight or flight response kick in as you know that at any moment the tears will start and you can't bear for them to see. A place where you wish you were invisible so you could crumble in peace. A place where solitude is all you crave. And sleep. Uninterrupted and dreamless sleep. Oblivion.
You're driving, and you catch yourself drifting across the the lane into oncoming traffic, you haven't been concentrating as your mind is still in that unfamiliar place, and for a nanosecond you contemplate staying there, how quickly the pain could be over. And as quickly as the thought crosses you mind, you realise how wrong it is, and suddenly you can't breathe. You have to pull over as your vision is blurred with tears as you cannot believe what has just happened. You realise that you are allowing the disease of another permeate your psyche. Muddy your waters, comprimise everything you hold dear. And you are left wondering if you have been worrying about the wrong person. Putting your efforts into the wrong cause. If in fact it is you that needs help. That you have been so obsessed with the depression of another that is has snuck up and bit you on the ass and you hadn't even noticed.
Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.
Today, I shaved my head. I had managed to last almost a year with hair, but it has started to recede again. This isn't the first time I have had to shave, yet for some reason this time has been the toughest. UC has robbed me of so much. It took my lively hood, stopped me from being able to work and made rely on state benefits. It robbed me of the ability to breastfeed my children for longer than a few weeks. It has destroyed friendships as people couldn't understand why I kept canceling plans, relationships, taken my confidence, left me feeling worthless and a failure as a mother as a friend and as a contributing member of society. Yet I kept going. Brushed my hair, and soldiered on. Plastered on the smile, built up the walls and told the world that I was fine, over and over agin until I started to believe it, until it started to be true.
Having my colon taken out was strangely liberating. Getting rid of that diseased organ gave me a chance of a fresh start. I embraced my Ostomy as it represented me getting my life back. The problem is, I haven't got my life back. I still have UC. I still bleed from my back passage. I still shit myself. I still have fatigue. I still have pain. I still have days where I feel like I am wading through mud, where everything is a struggle, where getting through the day in one piece, with my children fed and safe feels like a marathon. These days are far fewer than they were before the operation. The difference is 100% better, but my baseline before was minus 10 where plus 1 is feeling like death and plus 10 is feeling totally healthy, so...... And the guilt. My god the guilt. This surgery was suposed to "cure"me. It was supposed to stop my loved ones from having to see me in pain, having to drop everything to help with the children, stop me from not being able to get out of bed, stop the pain, the bleeding, the accidents, the feelings of self loathing, worthlessness and zero confidence. So I fake it. Again and again. I get up, I get on with it. I put my big girl Ostomy pants on, brush my hair and live my life. I try not to complain, play the "sick card". Except now I have no more hair to brush.
Frightened to mention that I am a member of a theatre group, and that I have managed to get to rehearsals (even though I spend the next day recovering, and two weeks after show week was spent in bed), because that would suggest that I am "well", as everybody knows that disabled and chronically ill people cease to be disabled and chronically ill if they are able to have a social life, or manage a supermarket shop. 
