Wednesday Woes

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."


The irony.

Confessions of a professional liar

I am a liar.

My "life" is a lie.

Let me clarify.


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.