My child my carer, my guilt.

There are times when I feel as though life has played a cruel joke on the my son by pairing him with a mum like me. What other reason could there be for giving a child a mother once so vivacious and so full of life, only for that child to then watch as she slowly withers into a shell of her former self?

My longing for a child was dashed quite early on in life after I was told at 13, that due to a congenital deformity of the womb, I would be unable to carry. A few years and two miscarriages later seemed to confirm the fact. And so I settled with the idea that it simply wasn’t meant to be before locking it away and burying it deep within the recesses of my mind. And then life took on a surprising turn. After suffering with pain in the lower left side of my abdomen, I took myself off to A&E where they performed a series of tests. Imagine my surprise when I was told that I was three months pregnant and then my shock that the pain was an indication that it was an ectopic pregnancy. I was told that I would need to go back to the hospital in two days time, where they would remove part of the Fallopian tube along with the fetus. I told them no. The doctor was called in and argued that my baby was “already dead” and that if I left, I would have no one to blame but myself if anything were to happen to me, and so I left. The upshot was that In the end, after having had a scan and a written apology from the hospital, the baby was deemed fine and so my life as a mother begun.

When he was born, my womb-fruit resembled a rat spliced with the gene of a howler monkey, but he was all mine. At 8 months, he would have meltdowns of such epic proportions that I knew that something wasn’t quite right. When he reached 18 months, he begun to see a child psychologist. He was tested as being ‘above high intelligence’ and the meltdowns were thought to be a result of being to young to articulate himself, but I knew better. At the age of three, he could read fluently and even potty trained himself. I spent months placing him on the damned potty with no success, only to one morning hear the soft padded patter of tiny feet going to the toilet, closely followed by the sounds of the it being flushed. This was also along the time he was diagnosed with childhood arthritis.

Still, despite having tantrums where he would need to be restrained for fearing of harming himself and me, (I’d already suffered two concussions) the world was a place of adventures waiting to be discovered. Art galleries, theatres, cinema, museums, picnics in the living room and making bubbles out of household products, we did them all. My favourite was art time where he would sit still and I would paint him…no literally. I would take the brush and paint that little womb-fruit from head to toe whilst he sat there and laughed.
Over the years, I have sat through every school play and every concert. I have attend parent’s evenings and accompanied him on all school trips. I have laid alongside him when his joints were to painful for him to move, hid under covers as we travelled through caves, rolled along floors as we bumped our way down pretend hills and supported his career choice of becoming a bus.

When he was diagnosed with high functioning autism as I suspected, he didn’t care and when asked that should somebody come along, wave a magic wand and make it go away, would he do it? His answer was no.
And then I became ill and life changed yet again.
On the good days, life carried on as before and on the bad, he would make me tea in a small china teapot and carry that and two cups upstairs so we could drink and chat whilst in bed. He was seven.

By the age of nine, there were no longer any good days and he had become my full time carer. He had also at this point, been diagnosed with having Hemolytic Anemia, a condition in which the red blood cells are destroyed before their normal lifespan is over.
Now there were no more Art galleries, theatres or museums, and cinema trips are reserved way ahead of time to allow me sufficient strength to be able to go. I missed his last parent’s evening and all bar one of his award ceremonies and I won’t be able to go with him to look at colleges for September.

He’s fifteenth now and despite his own ailments, he cooks, shops, pulls me to standing when I can’t get up and accompanies me to my hospital and doctors appointments. He never complains, but I can see in his eyes that he is tired. We laugh a lot and have long rambling chats whilst sprawled out on my bed. He has given me life, but I feel as though I’ve stolen his.
At night, I wait until he is asleep and shed tears of guilt that he should be saddled with me as his mum. I am supposed to be the care-giver, not him. That shouldn’t be his role to take.

Last week we were both ill, which meant that I couldn’t get up to care for him. That left me feeling as though I didn’t deserve the title of ‘mother, ‘ and that I had failed him.
And so I lie awake and wonder what all this is doing to him mentally as well as physically. Will he look back on his life in years to come and remember nothing but darkness and illness? Will it impact his future? His relationships?
The guilt is overwhelming, it swallows me whole because no child should have to look after their parent and yet many have no choice. The Young Carers Network that he belongs to, do a great job in supporting children like him, but it’s no substitute to having support from a parent.  On some level, he must resent me and mourn the life that we once had, because I know I do.

In a couple of years, he wants to go way to University and live on campus. And although I am afraid of being alone and what that might entail for the future, I shall give him back his own by encouraging him to go and live his life to the fullest.


Adventures In Laundering.

Taken from a post written for The Mighty

‘I’ve been sitting here for an hour, trying to summon up enough energy to go downstairs and load the washing machine. Before that, I had taken a nap, but now I need a nap to recover from the first nap.
If I were Sleeping Beauty and Prince Charming came along to place a delicate kiss upon my lips, thus waking me from a 100 years of slumber, I would high five his face with my fist and ask why he felt the need to wake me. Will this tiredness never cease?
Okay, I’m gonna go and load the washing…right after I take a nap…’

This was from a  Facebook status that I had posted earlier on in the day. Ten minutes after taking that nap, I eventually begun the process of loading the washing machine…but not before pushing the laptop aside and taking yet another nap. After a bit of self berating which included the words “get your big arse off the bed you fatty boom boom,” I decided to take down and fold the clothes that had been drying on the rack in my room. Yes, I do have an outside washing line, but the upper arm strength needed to reach up and peg bits of materials onto a line, takes athletic skill and great prowess. It also means a walk through a garden so overgrown, I fear that I may be attacked by poisonous Amazonian spiders bigger than my face, set upon by Pygmies, or trip over a well concealed dead body. And so I sat gently on the side of my bed and prepared to fold laundry like a boss. And I did…on my back…with my eyes closed…without said laundry being folded.
Thirty minutes had now elapsed and I awoke surrounded by the pink blossom scent of my child’s underpants. Like an origami amateur, I quickly folded the clothes into shapes that could not be defined, gathered up the dirty laundry and proceeded to head downstairs.

The journey downstairs felt more like a trek across the Gobi dessert, and instead of walking down thirteen steps, I was battling sand storms and sedimentary dunes. Reaching my destination, and by destination, I mean chair, I threw the clothes haphazardly upon it, and then sat on top of the mountain of washables. Twenty minutes idly passed by. Twenty minutes that could have been utilised by doing something more construction or more productive, but instead, I spent the time dreaming about a man watching me from the not so far reaching corners of my attic. And that’s when I spied cheese…lots of cheese. It was everywhere. On the glass table, the DVD shelf, the CD cabinet, the floor and sacrilegiously and almost criminally, on my album covers. It appears that unbeknown to me, the Womb-Fruit had gotten himself a side job as a rat catcher. And so I scrapped, and wiped and rued the day he was born, before assembling the hoover and commencing operation ‘Cheese-Grate’.
Now I really did need a nap. A fire breathing dragon had scorched my back or at least that’s what it felt. The fiery tendrils of flames soon licked along my hips and down my thighs, and my ankles and feet had become so swollen, they begun to meld as one. I had cankles.

This time the nap only lasted for ten minutes, but the pain and swelling in my feet made it virtually impossible to walk. My back still burned and I’m sure I felt a couple of already loose discs, slip further down by spine. But on I pushed to the ultimate goal. The kitchen.
At this point, I may have cried a little, just a sniffle, but my tears were soon abated when I saw where the Battle Of Waterloo had really taken place…my kitchen. It was a battle field. I immediately set about writing the Womb-Fruit’s last will and testimony, because a murder was going to take place once he arrived home from school.
Placing the washing on a nearby table, I cleaned to the best of my ability, which is not saying very much. By now I was hunched over like the Hunchback Of Notre Dame, the pain no longer allowing me to stand upright. I gave up on the dishes though. To do that would mean balancing on one elbow so that I didn’t collapse, whilst attempting to wash the dishes with the other.

Finally, the end was in sight. I grabbed the clothes and wincing as I bent down, placed them inside the washing machine, jiggled with the settings and pushed ‘ON.’
Mission accomplished. It was only when I had reached the confines of my bed, exhausted beyond belief, and after literally crawling up the stairs because of the immense pain, that I realised I had put the clothes on the wrong cycle. “Never mind”, I thought, “I’ll go and reset it in a minute”. At which point, I promptly took a nap.

Why I Hate My Consultant-Part Two


Continued from Why I Hate My Consultant. Part One

Flicking quickly through my records with just a casual glance, Mr C then nonchalantly asked about my medical history, even though they were right there in front of him. At this point, I was beginning to feel slightly peeved with his throw away ‘I’d rather be working at some posh clinic then here with the plebeians of society’ manner, but still I listed them off one by one and watched, as I always do with those in the medical profession, which one of my ailments he would group together as one, (Fibromyalgia and CFS) and which ones he would ignored altogether. (ME and Lupus, which by the way, he said I didn’t have, but was which was later confirmed when another consultant sent me for a full body scan. Sour grapes anyone?)

After jotting down a few notes, (probably he’s golfing scores) Mr C leaned back in his chair and with a grin not unlike a predatory shark, asked, “so what seems to be the problem then?” I’m not sure how long I looked at the man, but by the smirk slowly fading from his face, I’m guessing it was quite a long time. Maybe if he had taken the time to read any one of the thousands of pages in my medical file, he might have actually known what I was there for. After all, he is the specialist. So I rattled off the usual complaints, and told him about the recent pain in my bones. He in reply, rattled off the usual “it probably due to Fibro”, because he thinks EVERYTHING is related to Fibro and then pretty much told me that my concerns were rubbish and that I didn’t know what I was talking about. And then he ended his sentence with, “but I’ve told you all this before.”
Now picture a bull and a man waving a red flag. I was that bull and pretty soon, I was taking him down a trip down memory lane.

“Er, no you didn’t. In fact, you haven’t told me anything about my condition apart from the fact that it all relates to Fibro. You poke and prod, write a few notes and then tell me you’ll see me in 6 months time.” Of course he took umbrage at such an accusation so I reminded him of how my original diagnosis had happened. How he had tested me for the 18 tender points, and at the end of it said, “Oh yes, you have Fibromyalgia.” I’d never heard of that condition until that day, but that didn’t stop him from throwing a rather flimsy leaflet at me and saying, and I quote, “go and look it up.” I finished by telling him that everything I knew, I researched myself. That if he bothered to look at my files, he would know that not all my ailments derived from Fibro and that each one was not one and the same. I also told him that he needed to learn some bedside manner, (I may have swore at this point) listen to his patients instead of dismissing them and to not be so blooding patronising. Finally, I assured him that I would be going back to my doctor to ask whether I could be referred to someone who knew what they were talking about. And with that, I walked out…well hobbled rather slowly, which kind of spoiled my dramatic exit.

By the time I saw my doctor that afternoon, Mr Consultant had already faxed him a letter to say that I had been rude and uncooperative and that he no longer wanted to see me. And that’s when good ole Doc let me in on a little secret. Apparently, Mr C’s colleagues saw him in pretty much the same way that I did.
Now I’m ballsy enough to speak my mind and to say when I’m not happy with something, but many people aren’t. The stories I’ve heard and read about those who don’t feel able to stand up to their consultants, beggars belief. Some have been told that they’re worrying about nothing, others that it’s all in their heads and others still, have been treated as though their sole reason for seeking medical attention is just to get drugs. People have written about feeling small, or like they don’t matter and some have left their appointments in tears because their concerns had been dismissed, or they were denied much needed pain killers.
Just because these men and women hold a medical certificate, that does not give them the right to treat their patients as second class citizens. They may know the mechanics of what is going on in our bodies, but they have no idea how it feels or how it impacts upon our daily lives. Who are they to decide that they know better than us, or about what each of us is going through?
We may have come a long way when it comes to the field of medical science, but some doctors still have a lot to learn about how to treat people with kindness and respect and to most of all listen and take them seriously.

My Greenwich Angel

I have never spent so much time asleep as I have this week. In fact most of today was spent being rendered unconscious by the mother of all migraines. I’ve not had such a bad attack in quite a few years, so this one was a reminder of just how debilitating they can be.
It seems that each morning as one set of symptoms subsides, I’m hit by yet another. Of course with that much pain, the only escape is through sleep. Unfortunately, sleep doesn’t come with that much pain. It’s a futile cycle.
The only solace I could find to counteract the hammering in my head, was through thought. So I thought back to my first migraine attack.

I was 11 and it was during a school trip to Greenwich. I remember rolling down hills with my classmates and hopping from one side of the Meridian line to the other, fascinated by how with just one leap, I could be in the western hemisphere one moment and then the eastern hemisphere with the next youthful bound. After that, it was all a bit hazy, because from out of nowhere, somebody appeared to be beating me repeatedly across the cranium with a heavy object. My vision too, had become obscured by a large blob making it impossible to see and I started to panic. We had only been at Greenwich for an hour, so rather than postpone the rest of the trip, I was carried to a nearby Nunnery and left in the care of the ladies of poverty, chastity, and obedience. I will never forget the elderly nun who took me in her arms and sat with me whilst I cried and snotted all down her freshly clean habit.

I honestly thought that I was dying. That I had some kind of a brain tumour. It hurt to open my eyes or to even blink. Every swallow and every gulp took their toil and although the act of crying hurt the most, I couldn’t stop out of fear and pain. And still, she sat for hours, stroking my hair and rocking back and forth whilst whispering softly spoken words of comfort, which I sadly can no longer recall. At one point, I was aware that I was making a mess of her habit but that she didn’t seem to care, and that made me nestle further down in-between her breasts to hide from the monster gnawing away at my brain. It must have been 5 hours before my teacher came and carried me onto the coach, but I don’t remember it. I’d slept whilst in the arms of an Angel and for a further 3 days afterwards.
It has always irked me that I never got the chance to say goodbye or a thank you, or that I never knew her name. I would have liked to have ventured back one day just to tell her how safe and nurtured she made me feel that summer. That every time I had a migraine thereafter, I always thought of lying in her arms and falling asleep. And that’s just what I did today. In remembering my Angel, I was finally able to escape the pain and to slumber once more.
Some people will never know the impact that they have had, on the lives of others.

I Think The Government Is Trying To Kill Me.

Can you imagine how much people like me cost the government in free prescriptions and hospital treatments each year? I mean the amount must be huge, hence it makes sense why they would want to kill me off.
No, this isn’t the mad rantings of a conspiracy theorist on how the powers that be have devised a convoluted plan to knock off the weak, the poor and the disenfranchised. (though it wouldn’t surprise me if they did) But what else explains the reasons that doctors and consultants throw a truckload of meds my way, (which are no use an don’t work) whilst limiting the drugs needed to keep me alive?
The discrepancy in the way they hand out these meds makes no sense either. For example, I have to take 125 mg of a particular drug which comes in two forms. One pack contains 100 mg and 2 blister packs, the other 25 mg, again containing 2 blister packs. But where I’m given 4 boxes of the 100 mg, I only receive 1 box of the 25 mg. This means that whenever the time to review my meds comes around, I’m always invariably short. No problem if I have a repeat prescription, but if I can’t go out and collect the bloody thing, then what?

Right now, every single joint in my body is in pain. My bones are sore and my face and jaw ache and feel tight. There are sharp shooting pains in my chest, abdomen, side and back, while my head is pounding and my sight fading. And all this is further compounded by the worst case of nausea I have EVER experienced. (and that includes the hellish morning sickness that comes with being pregnant)
I have however, noticed a kind of pattern to all this. First the head will pound, then the face and jaw will tighten. The sharp pains will then kick in followed by the extreme nausea and all I can do is lie there and not move, because to move would mean emptying the contents of my stomach everywhere. (as I soon found out) I can’t eat and the only thing that keeps the vomiting at bay is sipping ginger beer. Essentially, my body is shutting down and the lack of that 125 mg is the reason why. It’s a drug that I need to take for the rest of my live and I’ve been warned about what would happen if I don’t, which is what in effect, is happening now.

So when will I be receiving my next batch of medication? Well that will be on Thursday. But the pharmacy closes half day on Thursdays and I can’t even walk the 4 steps to the bathroom let alone take a 30 minute trip to the chemist. So in all probability, it will probably be Friday after the womb-fruit is able to collect it after school. And will they double up this med so that this problem never arises again in the future? Hell no! There’s more likelihood of a Zombie apocalypse or an alien invasion happening. So yeah, Imma stick to my unapproved assumption that the government is trying to kill me off in the meantime.

Why I Hate My Consultant. Part One

Today I had to fill out a form. At the part where it asked for my medical history, I wrote the following:
Chronic Fatigue Syndrome
Myofascial Pain Syndrome
Degenerative Disc Disease
ME (I refuse to combine CFS with ME)
Allergic Rhinitis
I didn’t even bother writing down the illnesses within those illnesses, which would have equalled The Britannica Encyclopedia in size, just  handed the completed form back to the receptionist who read it and then gave me a look.
I had seen that look a thousand times over the course of each diagnosis. It was a look that said, “you’re kidding me right? There’s no way you have all of these.” In other words, she was calling me out to be either a liar, or  at very the least, a hypochondriac. I glared back at her and watched as she perused the list once more. That’s when her resting bitch-face, which had been firmly at repose, suddenly became animated and arranged itself into a full on venomous she-devil face as she tartly asked, “Isn’t chronic fatigue and ME the same thing?” Obviously as well as working the desk, she also had a certification as a medical practitioner.

“No”, I replied, although it took every ounce of my being not to tagged “bitch” at the end of that one simple word. Then I continued, “there are very acute differences in both conditions. It’s only those who don’t do their research who lump them together because of their similarities. It’s a lazy diagnosis, but you can place them together if it makes your job easier.” And then the bitch “Hmph” me! She actually closed her mouth in order to produce a sound that denoted a “fuck you!” I almost told her that if she didn’t like her job, then she should go back to her original occupation as a woman of the night, but instead settle with a remark that she needed to go back to training in order to learn how to deal with patients in a polite manner. This time she remained quiet and I went and took a seat awaiting my appointment.

Fast forward and my name is finally called. On entering the room, I try very hard to stifle my disappointed groan, because this particular consultant and I have had words on more than a few occasions. He’s the type that thinks because he has risen through the ranks to become a specialist, he now holds superiority over all human life. I note the equal look of disappointment on his face as he realises who his first patient is, and match my genuine smile at that, to his own wolf-like grimace.
As we both make idle conversion, neither one of us caring about the other’s answers, I take a chair and wait patiently for the battle to begin. It doesn’t take long.

I may be overreacting but…


Every time I see the picture above posted on social media, it stirs up something in me not unlike a pot of boiling rage. It’s quite a strong message but It doesn’t tell me anything about the daily struggle the poster is going through, nor does it tell me what they’re feeling. It doesn’t impart upon the reader any information except to say, “take pity on me” and even though I’m a great supporter of the ‘pity party for one scenario,’ (It’s a skill I’ve mastered well) I don’t need a picture to do the job for me.
I’m not saying that every picture has to detail someone’s daily struggle or must contain vital information about their condition, but I feel as though the words used could garner a negative reaction.

For me however, it’s an image that’s both blaming and condescending. In life I flit between wanting to be acknowledged and not accused of “faking it,” but I also want to be treated much the same as anyone else. Yet the line ‘I hurt at places you couldn’t imagine’ separates me from others, creating a ‘them and us’ status. it’s defeating and patronising, especially the part which reads, ‘beyond your comprehension.’ Okay, so it may be true that the pain that I and others feel is beyond most people’s comprehension, but that’s because most people haven’t experienced it. Everything can be beyond someone’s comprehension if they haven’t been through it themselves, but that particular line feels like the finger of blame being pointed at those who do not have a chronic illness.

And do I really need people to know how strong I am so that they can say “well done you for doing what so many other people with chronic illnesses do every day?” If the person who wrote that really was strong, would they need to advertise that fact?
In saying that, many people find solace in those words. It says what they think, which is that those who don’t have it, don’t get it and I understand that completely. But here’s the thing, many people who don’t know our story already view us as whiny, self-obsessed complainers with a fake illness that’s all in our heads, and posts like this do not help with that stereotyping. It could have so easily been written as

‘I hurt at places which cannot be imagined, at a level beyond comprehension. If this pain could be felt by anyone for just one day, then they’d realise how strong they really are’.

There is no divide in that statement, no finger pointing or self pity because both the person posting and the reader, are encompassed within those few words. Most of us want understanding and compassion, not a sense of ‘woe is me’, which is what this sadly portrays.