Dust Bustin’ A Thing Of The Past.

I’ve never been a fan of house cleaning, but boy was I adept at it.
I could clean, scrub, mop, hoover and dust two bedrooms a large living room, a sizeable kitchen and the bathroom in an hour and still have breath to wash my neighbours cars, do the window cleaner’s round, shop for the old lady across the road and mow the whole neighbourhood’s lawns…Okay, that may be a little bit of an exaggeration.
I was, I admit, a little OCD when it came to hygiene and would whizz around the house like a speed loaded Superwoman on crack. Of course, being a virtuoso of germ busting, I could catch a speck of dust before it had time to land on a newly polished surface and if there was a water mark on the table, I would throw a rage so scary and of such apocalyptic proportions, that even Satan himself would be so terrified as to renounce the heathen life and turn to God. And maybe, just maybe, I did get a little carried away, especially when I used to wake the Womb-fruit up at three in the morning so that I could change his bed sheet and duvet cover. But fear not, for this was done with such skill and precision that come the morning, he would have no recollection of being hoisted out of his bed and thrown upon a chair, and so would awaken surrounded by the scent of lavender blossoms and pine needle forests, instead of dead man’s feet and Gorgonzola.

Back then, My little man was a great co-conspirator in my need to purge the dirt and when it came to ‘tidy up time,’ like Snow White and her demented men of short stature, we would whistle while we worked (ooh, an alliteration) and sing a merry tune with some twerking and slut drops thrown in. That’s a dance move by the way and not us dropping sluts off to various places. Nowadays, I have to make an offering to the Norse Gods in the hope that they will grant him the ability to pick his underpants of the floor, least they walk to the washing machine themselves.
Today, my need for a clean house is still there, but my ability remains hopelessly lost.
Thirty minutes ago, I hobbled downstairs to get the clothes from the washing machine. That was it. The result from such a simple activity left me out of breath, in pain and perspiring, which is just a nice way to say “sweatin’ like a pig.”

Housework consists of wiping a surface, then resting. Washing up, then resting. Plugging in the hoover, then resting. Hoovering then…well you get the picture.
I can no longer speed around the house. I can maybe clean one room and that’s it for the day because the resulting activity will bring on a flare and have me bed bound for a week and THAT is no exaggeration.
Thursday I went food shopping and that’s exactly what happened. I came home, dumped the bags in the hallway and literally crawled up the stairs to my bedroom. I was only suppose to rest for five minutes but passed out for four hours. And that’s where I stayed, in bed right through to 30 minutes ago when I went to unload the washing machine.
A triumphant day for me means changing a duvet cover (although once I’m finished, I have to crawl right into bed afterwards) or cooking a meal. I can’t attempt to even begin to clean the boy-pit that is the Womb-fruit’s bedroom. That requires at least two days, a JCB digger and Herculean strength.

I remember the time I attended a pain management group and how the therapist asked what would happen of we didn’t tidy the house. What was the worst that could happen? You could actually see the look of fear in her eyes as the group, which was comprised soley of women, snarled at her like rabid rottweilers. Because it isn’t just about cleaning, it’s about loss. Not being able to tidy is a daily reminder of yet one more thing that’s been taken away from us. It’s about our inadequacies at not being able to do even the most menial of tasks, which in turn, makes us feel inadequate about ourselves.
It’s about feeling useless and no longer having a defining role in our own households. It’s about our failure to be the glue that hold the pieces together. But more than that, it’s about the fact that our many illnesses has beaten us yet again.
I never thought that there would come a day when I would miss doing housework or think about how much we take being able to do such a simple task for granted But I can honestly say, that I do. I really do.

This Is Me

It’s strange how one gets used to not being heard, and in truth, I’ve resigned myself to it. The way people circumvent certain issues or talk over me, are all part and parcel of what has become my life. I do not have a voice, either in real-life or here over the internet…well, not one that that anyone listens to, and I’m sadly lacking in friends who don’t roll their eyes or avoid any mention of my illness. Although I feel a tad lonely at times, it’s a comfortable sort of loneliness. There are no sighs to listen to, no eye rolling to witness and no-one to make me feel inadequate for being me.
Having an invisible illness, sorts out the true from the false. The ones you thought were friends and the ones who truly are. It’s an eye opener to how others view you and a reality check to your status. The mourning process is never easy when you lament the life you once had or the person you used to be. But it makes me glad of the small things and the fact that I am here and present.
This is me, letting it out. 🙂

Life From The Edge Of A Toilet Seat. Part Two (The Toilet Zone)

My bathroom is an afterthought. It is also what one might call bijou.
It’s as though whoever designed the house, was so overly impressed with themselves at the paper thin walls and lopsided floors, that they forgot to add in a bathroom and thus remembering so, quickly utilised what space was left.
They also forgot to add a window leading me to believe that he or she, must have been raised in a cave. Maybe they was going for that In Utero look and trying to give off a sense of womb-like tranquillity. Or maybe they just forgot to put a bloody window in!
So not only do the Womb-fruit and I have to contend with a bathroom that even an Oompa Loompa would deem too small, but the lighting system is now acting as though it’s been offered a starry role in a horror movie.

Needless to say, the light remains switched off, least one or both of us succumbs to a fit of epilepsy. 
So I sit in the toilet zone, the sound of the whirring fan my only company…well I think it’s my only company, it’s too dark to see what else is in there. 10 minutes or more I sit, my legs slowly growing numb from being in the same stationary position. And I think back to the time when my legs gave out, the pain in my right knee making it impossible to stand. I cried then because I was alone and had visions of myself whiling away my life stuck on that seat. I thought back to the time when the arthritis in my hand became so bad, that my immediate reaction was “who’s gonna wipe my bum?!” I cried then too although I can laugh about it now. It was just that at that moment, the thought of having to ask for help in that particular department made the tears flow just that little faster and caused my will fade.

But I also remembered the sounds of laughter coming from the Womb-fruit as I yelled “IT’S NOT COMING OUT! OH LORD, IT’S LIKE GIVING BIRTH ALL OVER AGAIN!” Or I myself tittering as he asked in huge disgust, “what the hell have you been eating? Human Flesh?!” Before then burning half a packet of incense and complaining that I probably had the means for chemical warfare right there in that tiny room.
Because in that tiny room, I do a lot of thinking. I think about what to have for dinner or if that last piece of chocolate has been eaten yet. I think about the books that I’ve yet to read, or a conversation I had earlier in the day. I think about what to blog about and how much I want to be outside in the fresh air. I think about my family and wonder where all my friends have gone since I became ill. Are they happy? Do they miss me, or are they glad that they no longer have to deal with “that friend who’s always sick?” I muse over the the potential relationships that I’ve had to forego because I didn’t want to become somebody’s burden. But mostly I think about what the hell I’m going to do if my arse gets stuck on that seat. Shit, I don’t want to die on the toilet and become another Elvis Presley!

Some days my only exercise are the four steps that it takes to get from my bedroom to the bathroom, and they exhaust me beyond belief. I don’t want the Womb-fruit to come home and find me glued to the porcelain throne. I don’t want him to be the one that comes to my rescue. I feel like I’ve stolen enough of his childhood as it is without him having to deal with that.
I think about that too when I’m in the dark, my guilt only slightly abated by the fact that he told me not so long ago, that I wasn’t a bad mother and I never have been. And guess what? I cried at that too, but this time they were tears of happiness.
But as much as it pains me to make that epic journey to the room without windows, I have to be thankful that I still can. In a few years I’ll need both a hip and knee replacement and the success rate for my progression of osteoarthritis is 50/50. I have been forewarned that I could end up in a wheelchair, so even though those four feet are hard work, they are precious to me.

Now if you’ll excuse me, I must go and conquer the mighty underwater beast and release the Kraken if I am to reclaim the porcelain throne once more.

Life From The Edge Of A Toilet Seat. Part One (Releasing The Kraken)

It takes exactly four steps to reach the bathroom from my bedroom and thereon, exactly two steps to get to the toilet from the bathroom entrance. In my head however, those footfalls take far far longer, for in the dark recesses of my mind, the aforementioned footsteps equal an epic journey of great importance and ginormous magnitudes.

The journey inevitable begins from the prison of my bed, whereby a huge exchange will take place between my mind, bladder and body.
Bladder will argue it’s point regarding the need for release whilst putting forward it’s plight concerning the injustice of having no control and always having to be put on hold.
The Mind will rationalise the many problems faced by not getting up and taking care of nature, whilst gently reminding me of the intricacies of the Kegel method and that women with slack ‘Lady Gardens’ DO NOT get dates.
My body? My body will be in the midst of giving up. All the components that make it functional, will be staging a gang warfare on their enemies Pain and Fatigue and all the while, I will just be lying there and pondering the fact that if I peed myself, I could always turn the mattress over. Besides, who wouldn’t welcome a bit of warmth on a cold chilly night…even if it is rather wet?

And that’s when Dignity comes into play, (Damn you dignity!) forcing me to leave the confines of my enclosure and forwarding me onto my arduous adventure. Those four steps I wrote about earlier? Well they are no longer the mere treading of carpet. They are the battle walk of the weary and the forlorn as I trudge towards uncertain doom. Will I ever reach my destination on time, or like the war torn children of 1940’s Britain, will my bowels evacuate? (Er..sentences like that may be the very reason why nobody reads this blog) So onward I march or lightly shuffle, over lands and hills, through towns and valleys, into worlds unknown and of mythical proportions. Encountering Hydras, two-headed werewolves and other beasts of my wanton imagination, my journey finally ends when I slay the fabled underwater monster and declare proudly, “RELEASE THE KRAKEN!” And yes, that is a euphemism for it’s time to poop.

So now I sit on the porcelain throne of my disembarkation, spent and slightly nauseated from the hardship of my travels. I cannot allow myself to feel a slight moment of victory, for the hard work has yet to begin.
Now as it has already been surmised, a trip to the bathroom is no mean feat. Once there, the occupancy of the room could take quite a while because once the cool surface of the throne is warmed by the posterior of the occupier, it’s er…rather difficult to achieve standing position thereafter. And so I stay and wait, and contemplate life from the edge of my toilet seat.

Misogs Misogs Everywhere. (A short rant)

It seems that I missed the memo currently circulating, which states that those with a chronic illness must behave like complete and utter misogs. (miserable person)
Apparently, illness is not a laughing matter and shouldn’t be treated as such and to some extent this is true. But what if I choose to laugh at myself and my various conditions?
Where in the Book Of Life And How To Live It, does it say that when down, we have to stay down? That laughing at oneself is not conducive to being ill?

There are less than a handful of blogs where the blogger writes about their illnesses in a humorous ways and whilst their followers are fully in on the joke, exchanging their own stories whilst laughing at themselves and along with others, there are a tiny minority who act as though we have been licking at the armpits of Satan. One blogger was even called out for not taking her own chronic illness seriously and chastised for being the reason why no one takes us seriously. Really????

So does that mean that I need to sit in a darkened room listening to Edith Piaf, whilst existentially contemplating that I am who I am because of my own making? Fuck no! That shit is depressing! (Though I do admit to liking a bit of Piaf) I will continue to assign personalities to each of my disorders and to laugh wholeheartedly at myself and my situation. Of course there will be serious postings and dark musings because no-one can be happy all the time…unless you’re Richard Simmons or high. If someone doesn’t like what I write or the way that I write, then fair enough. Move on. Life is to short and I’m in too much pain to care about such pettiness.

My Mother, The Superhero.

I love my mum. I inherited my particular brand of crazy from her.
When I was a scruffy teen with piercings, a shaved head and tattoos, she would often whisper lovingly to me as we walked down the streets, (in a way that only a devoted mother could) “can you walk behind me? I don’t want anyone to know we’re related.”
From the age of 11 when my migraines were just beginning, she would pour some Alcolado (a mentholated lotion) onto a handkerchief and then place it gently upon my forehead.
The cooling sensation would soothe away my migraine as I cried myself to sleep and the pain abated. One night however, she got a bit too ‘splash happy’ with the old Alcolado and the damned thing near burned a hole in my forehead. To this day, she still maintains that it was an accident, but you know, hello! You almost burnt a crater into my skull!
She doesn’t have access to the world wide web, not after she asked what chemical she needed in order to completely dissolve a human body, (Hydrofluoric acid) the quantity needed and if it could be purchase from the internet. This conversation came came about after she had complained that my step-father had become boring after more than 30 years of togetherness.

You can always tell, when presented with a newborn, (not for any sacrificial practices, you understand) whether my mum thinks a child is cute or not, because she will pour unadulterated praise on everything but the babe itself. For example, “Ooh, what a cute little…pram you have there.”
If she’s polite and pleasant after you’ve introduced her to your current partner, it’s a “no” from her. If however she threatens to gut them like a fish and wear their entrails as a necklace if they ever break your heart, then it generally means “I like you. Welcome to the family.”
As a a child, I still remember the loving advice she gave to my sisters and I about what to do if we were ever being bullied.
“If anyone bullies you, then what you do is look around (here’s where we thought she would say look round and ask for help, but oh no!) and find a bottle. Smash the bottle against a wall and then use the jagged edges to go for the jugular.”
Such a gentle and docile woman my mum was back then.

She certainly is a unique and formidable woman, my mother. She raised four kids single-handedly and when my step-father came alone, she raised six kids single-handedly.  (men!)
She worked hard cleaning offices in the early hours of the morning so that she would always be there when we arrived home from school. And when I suffered from the dreaded swine flu that put me where I am now, she looked after the womb-fruit whilst I recovered.
She has been there through all our ups and downs and dotes on her 13 grand-kids and one great grandchild.
She also has liver failure and is soon to go on dialysis after refusing her own children’s offers to become transplant donors. Her reason for refusing mine? “What? With all your illnesses?! I’d be dead before they sew me back up!” She always did have a way with words.
She was devastated that I was diagnosed with osteoarthritis before she was. But now the two of us can hardly walk straight as we laugh about being two ‘old biddies’ hobbling down the road together. (woman doesn’t know that she has to practically carry my arse tomorrow when we go food shopping)

She rules with a ‘tough love’ but laughs like a deranged lunatic. And she will never read this tribute to her, or know just how much I love and appreciate her…you know, on account of the fact that she’s not allowed near a computer, remember?

I’m Not A Bad Person…Am I?

I’m a bad person.
I don’t mean to be.
It’s not like I would steal candy from a baby…okay, there was that one time that I snatched a box of raisins from my 15 month old niece. Also they weren’t really candy and the little git had it coming. (that’ll teach her to pee on my £9.99 pair of suede ballet pumps)
And I’m not the type of person who laughs whenever anyone trips over some invisible object on the pavement. (well not to their face)
I love children (as long as they’re hog-tied to one spot) and respect old people. (as long as they don’t touch me) So I’m not really a bad person. In fact, if you look up the words ‘sympathy’ and empathy in a dictionary, you’ll find a picture of me underneath waving both sympathetically and emphatically. So I’m not quite sure why I reacted so negatively to a positive posting on a Fibromyalgia forum.

It wasn’t a twee comment, nor a notation of insincerity. It was a genuine heartfelt mention of all the things the poster felt gratitude for since being diagnosed a year earlier. But like a pigeon spying a gleaming, newly washed car, or a bald man’s head, I pooped all over it.
It wasn’t that I was jealous, just resentful. Yeah I know, that is an awful thing to admit. But at least I’m owning my pettiness.
Still, it was all rather perplexing, because I don’t do jealousy, or envy, not even a little bit. But as I read her warm and earnest words, I couldn’t help but begrudge her zeal for life.
She wrote about how thankful she was that she was still able to work, and I thought about the fact that I had to give up my dream job. A job that I had trained three long years to achieve.

She listed how lucky she was to have the love and support of friends and families and I thought back to how for years after, my friends and family thought that I was faking my illness. That on any given day, the only person to see the pain and struggle that I go through, is my son, and that it is him and him alone, that on my worst days, carries the burden (not that he sees it as such) of having to care for the one person who should be caring for him.
I snorted derisively as she shared how she was still able to do all the things that she loved and remembered with a lump in my throat, the daily walks that the womb-fruit and I would take. Our ‘us time’ where we talked about everything and anything, or how my bed sheets would be stained with the art that we created because we were to lazy to sit at a table because we thought it stifled our creativity.
And as she composed the fact that she would rather adapt to her illness then give up the things she loved, I spitefully notioned that that was all well and good. That she was only in the early stages and that things were set to get much much worse.
And that’s when I stopped.

Because Fibromyalgia is a great deceiver. It lets you believe that all the things you love to do will continue. That the worse days can be overcome and that over time, the pain will lessen. It gives you a sense of well being one day and the feeling that all is right in the world and then it takes it away the next. And finally, it will slowly eat away at you, your confidence, your independence, your sense of how you fit into this world and the very essence that makes you who you are.
Why would I wish any of that on anyone?
After a couple of days, I went back and re-read her words. Her positivity, her strength, her determination to adapt and not let her condition defeat her and I was filled with an overwhelming feeling of respect and admiration. That’s when I realised why I had been so damning of this random stranger. It was because I wanted to feel as she did. I wanted her fighting spirit and her will to never give up. I wanted her drive to succeed and to not let anything stand in her way. But most of all, I wanted her sense of self-belief.

So I’m not such a bad person after all. I just got lost in the mire of my own illness and one that was of my own making. And although there will be days where I will doubtingly slip into the wallow that is my pity party for one, like the person who typed that comment, I need to adapt and be thankful for the things and the people that I do have.

My Immune System Is A Twat

I think that because there are only around 2 people reading this blog, it’s quite safe for me to use such a strong word, because my immune system really is a bit of a twat.  Even as I type, there is a war raging. A war of such epic proportions that it is quite epic in it’s proportions…which is quite epic. You see, all four of my autoimmune diseases have decided to kick in at the same time and it’s made for one hell of a battleground.
The main culprit in all of this, is the immune system itself.
This is my immune system…

Say hello immune system…

As you can see, my immune system is not very sociable or particularly pleasant.
Now you see these cute little fellas?

These are healthy cells. Immune System doesn’t like healthy cells and seeks to attack them at every given opportunity.

Very unsavoury behaviour I think you’ll all agree, and I’m not talking about the peanuts. So what exactly is going on inside my body?

That’s right. A whole lot of dirty looks and blame. But being the bully that he is, Immune System does not work alone. Oh no, he brings his other friends to wreck havoc upon my frail and fragile form…What? I am frail and fragile and not as my womb-fruit surmises, ‘built like a female trucker whose gene has been spliced with that of a sumo wrestler…on steroids’. Look at the carnage now taking place within my inner workings.

And that’s not all folks. We have a veritable host of other occurrences happening. So let us meet the rest of this motley crew. First up we have the gut wrenching Mr Nausea.

Now don’t tell anyone this, but I think that Mr Nausea has a crush on my toilet, because so far, it has introduced me to Ms Toilet four times…hold on…wait just one second…

5 mins later…

It has introduced me to Ms Toilet five times today alone. I must admit though, that toilet doesn’t seem so enamoured with Mr Nausea…or the contents of my bottom half, which is a pity really, because the contents of my bottom half sure as hell loves Ms Toilet.
This rather aggressive fella, is WORLD OF PAIN.

Alrighty then, moving on. Can you guess who this is?

Now it seems that Colon has acquired a new friend called Viral Gastroenteritis. V. G as he likes to be known, is slowly draining away my life’s energy, along with all of my bodily fluids. At this precise moment in time, it is impinging itself within my innards whilst simultaneously feasting away at my intestines.

And that’s not all, although I’m too tired to introduce you to my other bodily cohorts. But rest assured that they will be dropping by to say hello soon. You can be sure of that.

Your Tired versus My Chronic Fatigue (how do I describe what CFS feels like?)

Over the years, my friends and families have stopped asking me how I am. This is because every single time, the answer will invariably be “tired.”
I mean why lie about it? There is no getting away from the fact that I look tired. The bags under my eyes have bags. I walk like a woman who has been condemned to the gallows and I’m just waiting for someone to ask my sixty-seven year old mother if I’m HER mum.
Of course if you’re a stranger, or the girl at the check out and you ask me how I am, I will answer with the obligatory “I’m fine,” when what I really want to say is, “Are you sitting comfortably? Then I will begin. It all begun in the summer of…” before giving them a long history of my pain and suffering (anyone for a steamy hot cup of over-dramatic?) in great detail. But I don’t.

The thing is, if you tell someone that you’re tired, the probability that they will answer with “me too” is 3/9 versus the probability that they will answer with “Oh you poor thing” which is 2/9. If that is the case, then the probability of “me to” will be far greater than the probability of”you poor thing”, with “me too” being the more likely outcome…not really, I just made that shit up.
But the answer “me too” is sometimes a hard one to take and makes one feel extremely stabby. It’s not that I have the monopoly on tiredness, but unless the other person is also suffering from chronic fatigue, it’s difficult for me to equate the two.

So how do I go about describing to them how my fatigue is different from their tiredness when I can hardly describe it to myself? How do I make them see that it isn’t just a fancy name for being extremely tired, that switching on the laptop, picking up the phone or simply just reading, is an exhausting experience? And anyone who has Fibro can tell you just how draining taking a shower is.
It seems a strange thing calling tiredness debilitating, but that’s what chronic fatigue is. It makes you weak and unable to do the most menial of tasks. Even that last paragraph took more than 45 minutes to write because I had to rest a couple of time in between typing. It clouds your mind and weighs you down so that you can’t put one foot in front of the other or raise your arms. Sometimes it feels so oppressive that it appears as though your whole body is sinking into the ground. Everything that you do, feels like you’re doing it whilst wading in a few inches of mud or as though you’re forever swimming against the tide.

I could ask them to imagine having the flu 24 hours, 7 days a week, 365 days a year, although for some, it comes and goes. Or telling them that even if I did manage t get 10 hours of slumber, the chances are that I would feel even worse than I did before I went to sleep. And what about the muscle pain, the sore throats, the headaches, the swelling and stiff joints, the chronic cough and nausea etc? What about the psychology symptoms as well as the physical? What about the impact that it has on friendships and relationships? How do I explain all that to someone who just thinks that I’m tired?
The fact of the matter is that I don’t. It’s so much easier just to say I’m fine, and so I do. Like many people with a chronic illness, we paint on our smiles and let the world think that all is sunshine and lollipop, and all the while, we continue to suffer silently.
I’m not trying to demean those who say they are tired. Whether you’re stressed, over-worked, pregnant, or running around after a handful of womb-fruits, tiredness can have a detrimental effect on anyone. I’m just fed up with people assuming that ‘my tiredness’ is an over-exaggeration, or something that can be easily remedied by getting a good night’s rest. But wouldn’t it be great if it could?

18 brilliant descriptions on what Chronic Fatigue feels like.