Does It Really Matter Who Speaks Out About Chronic Illness?

Some people can be such bloody misery guts. It’s disheartening that those who suffer with chronic conditions/pain, can sometimes be so lacking in empathy for those in a similar position.
So Lady Gaga has recently come forward to talk about her fight with Fibromyalgia, whilst Selena Gomez, who suffers from Lupus, has admitted that she received a kidney donation from her bestie as a result of organ failure. Each of these stories have hit the headlines around the globe bringing with it much needed attention and awareness to conditions which are often poorly understood or in the case of fibro, much maligned. And yet, the comments section of many articles are littered with such vitriolic and spiteful comments.

Some believe that it’s counterproductive for celebrities to speak out because it shows them struggling yet still able to function. Some say that they aren’t suffering enough. Others believe that it’s nothing to come forward about and others still, think that they are exploiting their illnesses for publicity. Oh, and apparently, “it’s okay for them to be ill with all their riches”. Seriously, when did wealth make it okay to be chronically ill? Yes, they may be able to afford medication and urgent treatment which are unavailable to the rest of us mere mortals, but that doesn’t mean that because of their statuses, they are more likely to be cured, because there is no cure. All we can do is to find ways and techniques on how to manage and live with these conditions. After all, chronic illness doesn’t discriminate between race, gender, age, or the rich and poor.

In the case of Lady Gaga, I do understand the whole debate that people will undoubtedly compare the fact that she is still able to perform, (although she has recently cancelled a few performances) to the way in which others live their lives, and there will be the usual unhelpful remarks of “well if she can do it, then why can’t you?” As well as “Well it can’t possibly be that bad then.” But surely by opening up a dialogue on such subjects can there be any kind of awareness as to how it affects everyone differently. Only through awareness can we stop people’s immediate reaction of “oh, don’t people usually die from that” when they hear about Lupus, or “my friend had that Fibromywhatchamycallit but was cured after she danced naked by the light of the moon, whilst eating the umbilical cord of a baby Unicorn, and chanting to the moon goddess Tsukuyomi-no-Mikoto.

It’s unfortunate that the plight of the little people go unheard whilst it only takes one celebrity to bring focus to the whole thing, but at least it’s out there. The only way to bring about awareness and to educate people is to have an honest and frank discussion. Does it really matter who it comes from if it gets it out in the spotlight?

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A Poem By Rebecca Ford

It’s been a while since I last graced these pages with my effervescent presence(note the hint of sarcasm there?) but it’s not for the lack of trying…okay, it is. It seems somehow counterproductive to have a blog about chronic illness, only to be waylaid by those same conditions I sought to write about.
Chronic fatigue is proving to be an absolute killer in terms of summoning up enough energy to produce anything coherent. It’s appears to be on a murderous rampage, attacking my brain cells and bludgeoning them into state of unconsciousness. And on that happy note…

I came across this untitled poem in one of the support groups that I frequent and the authour generously gave her permission for me to publish it. For me and others in that group, she summed up perfectly the pain and frustrations of having to deal with an illness that doesn’t just affect the body, but also as an impact on the mind and they way in which one thinks, feels and sees themselves.

I wonder how much longer I can go?
My brain is crowded, stuffy, and slow.
Needles prick me all through the day,
walking, or moving, all over… even when I just lay.
Words come out jumbled and backwards and sometimes, not at all.
Making me feel embarrassed and ever so small.

Aches and pains I can’t explain,
like shots to my heart, and even to my brain.
Sleepless nights and long painful days.
Still I beg, plead and I pray.
Will I ever not want to just sleep?
Will I ever be able to mop and sweep?

Will I be able to run and play…
no not now, not today.
Again I wake up feeling like hell…
I get made up, and pretend all is well.
Off to work I go,
in excruciating pain, and moving slow.

I put a smile on my face,
as I mentally prepare to join the working race.
I must be as quick and as happy as most,
but my body hurts and is stiff as a post.
I smile, nod and I wave,
to all those having such a wonderful day.

I work all day until I can’t move,
drive home crying, and crawl into bed to watch the news.
Waiting for a cure, or a new study,
Maybe someone can tell me why my brain is so muddy?
Why can’t I think straight,
or why OH WHY is living in pain my fate?

What did I do wrong, what did I say?
but still my questions go unanswered another day.
I barely get by everyday…
and wonder when all this pain will go away.
I will continue to hold to my faith ever so tight,
all through the day and into the night.

I’m not ready to give up, I want to fight,
but feeling like this, just isn’t right.
I hope my family and friends know…
my heart is strong, but my body just won’t go.
I can’t suck it up, or push it away,
the aches and pains are here to stay.

Medicines and creams I have tried…
why won’t anyone believe me when I cry?
To you I may seem overweight and lazy,
to you I might seem weak and crazy.
Well sometimes I too see that in the mirror,
with each day passing my fears get bigger and bigger.

There is no cure for this thing,
there’s no way to feel normal or sane.
All I can do is get by,
again I tell you, it’s very real, no lie.
You say I look fine, and just like everybody else…
have you felt knives jabbing at you, is that good health?

Do you feel the fatigue of a sloth,
do you wonder around aimlessly like a blind moth?
Does every touch, slap and squeeze make you cringe?
Do you lay in bed all day on a binge?
Do you get anxious and can’t sleep?
Do you question your own beliefs?

What would you do if you could barely walk?
Or have people staring at you strangely when you talk?
Would you be able to just “shake it off”?
Well if you could you are better than I,
because even though I appear normal, every night I cry.
For a life I once had,
for happiness and strength and not to feel so sad.
I’m in a living nightmare although you see,
a smiling, working person, acting as normal as can be.

Rebecca Ford

She Said Whaaaaa?

Being in pain 24 hours a day ages you. I think it’s to do with all the facial contortions of oohing and ahhing and ARRRRRRGHing as the daily pain gradually grinds you down.
A couple of years ago, people used to shave years off my age, now they add on decades. Like yesterday for example, when an elderly woman asked me if my thirty-nine year old friend was my ‘other daughter’…my other daughter being the Womb-Fruit who was not best pleased at being mistaken for a female.
I know I look tired and worn, but I was mortally offended, although not as offended as the Womb-Fruit at his assumed gender. Plus it would mean that if my friend was my daughter, I’d had to have given birth to her soon after I was born!

But that was not all. The old biatch woman then proceeded to ask what was the matter with my leg, that being the foremost question people usually ask when they spy my walking stick. Before I could answer, she followed that up with another question, “was it arthritis?” Rather then go through the list of my myriad of conditions, I replied “yes, osteoarthritis. It’s everywhere from my neck and spine, to my toes and fingers”, to which the She-Devil responded, “oh, so you’re not too bad then.”

Whaaaaaa??? Was my first overriding thought and then I considered that maybe she hadn’t heard me. So I explained that eventually I would need to have both hip and knee replacements and this is when Satan’s Mother piped up with “well, you’re still not too bad.
It was time for me to leave.

This morning, sleep proved to be an elusive son-of-a-bitch as I struggled with breathing difficulties, and so I did what most people do when slumber evades them…I ate chocolate. But of course chocolate at 4 am plus IBS, equals a not very happy tummy. And as the old saying goes,’a moment on the hips means a lifetime of agonising pain, a trip to the loo and a blocked toilet’…er…I pretty sure that’s how it goes…

And that’s when my thoughts turned to the old woman from a day ago. (not while I was on the toilet I may add) I constantly complain that when people see my walking stick, they wrongly assume what could be wrong with me. Or the assumptions that are made when I’m the youngest person in the rheumatology department, which is chiefly that I’m too young to have arthritis and so therefore, it must be something else.
I had made the opposite assumption with the elderly woman. I assumed that because she was old, she automatically knew what arthritis was and what it felt like.
Shame on me, because she probably had no clue what I was talking about.

So apologies elderly lady wherever you may be, although I take back half that apology for thinking I was old enough to be my own mother.

If I Knew Then, What I Know Now About Chronic Fatigue Syndrome

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I can still vividly recall the exact moment when I first heard the term Chronic Fatigue. It was throughout the period I was training to become a therapist and during one of our regular morning check ins, a member of the group suddenly announced that she had recently been diagnosed with the condition. B  was usually defined in our class as a bit of an attention seeker. Whenever the question ‘how are you’ arise, the usual response would be a quick summary before moving on to the next person. With B however, that simple question would be met with a rundown of her entire life’s history, at least that’s how it felt and so very soon, people stopped asking. B talked often about herself, usually to complain about how tired she was feeling. She would detail her aches and pains and bemoan the fact that she could only average a couple of hours sleep per night, But because she seemed so was perfectly turned out in the way she presented herself and because she was so effervescent and full of life, she was simply cast as being overly dramatic. There was nothing wrong with her as far as the group were concerned. How could there be? She didn’t look ill. She was simply tired. So what? Weren’t we all? So when she came into tutorials one day, her usual bright and cheerful demeanour extinguished and explained about her condition, everyone just rolled their eyes, myself included, and ignored her ‘ramblings’ about how exhausted she was. Even our tutors “hummed” in a kind of “yeah, whatever way and for the next two years, B never mentioned it again. Not once had anyone even thought to ask her exactly what chronic fatigue was.

On her wedding day, to which we were all invited, B was the life and soul of the party, and once back at college, she retained her usual cheery character. Now it’s only in hindsight that I can look back and wonder about the amount of energy it must have taken for her to get up each day and put on the mask of normalcy? How none of us could have possibly guessed just how exhausted she must have felt on her special day or the pain that she must have endured. And now that I think about it, and I mean really think about it, I now realise that all her talking wasn’t just ceaseless babble gained at seeking attention. It made sense that in a room full of soon to be therapists where the most personal of topics were openly discussed, that it would be the ideal outlet to vent one’s frustration. A safe place to express how she was feeling. After all, what better group of people could there be, who would be more empathetic to what she was going through? Sadly it seems, not us in our ignorance.

Today, whenever I talk to someone with a condition that I know nothing about, I ask them to explain. I don’t want to be that person that says “Hmm, I understand,” whilst all the while nodding my head even though I don’t have a clue what they’re talking about. It’s an unconscious form of dismissal and one that I’ve become accustomed to over the years.The way that I treated B, is now the way that others treat me. They will always ask “how are you?” And I will watch as they plant smiles upon their faces and their eyes slowly glaze over at my answer. If I could go back in time, I would humbly apologise to B. I would give her a gentle hug and and ask her to tell me about her illness. I would listen without judgement and although I may not have understood what she was going through, I would try my utmost to empathise with her situation.
I regret my ignorance that day and wish vehemently that I had been more supportive. In a world where Chronic Fatigue is still not seen as a viable illness by some, It’s hard to explain how taking a shower can wipe you out for the rest of the day, or that the more sleep you get, the more tired you become. It’s difficult to put into words the dread you feel at going out because you know that a simple task such as shopping, will bring on a flare and leave you feeling like a wreak for the rest of the week. Chronic Fatigue isn’t about being tired, it’s a feeling of being way past exhaustion, a feeling of depletion. The other day, my body decided to stage a coup as it held my bladder hostage. I urgently needed to go to the toilet and I did…3 hours later. My son asked slightly annoyed why I always waited until the last minute to use the bathroom and I tried to explain that just the thought of getting up to do so, left me bone-tired. I often think about B and how she’s coping. I just wish that I could talk to her and tell her that I understand and how truly sorry I am.

 

Offering A Seat To The Invisble

I have recently discovered that my walking stick has magical abilities, for it offers the power of invisibility.
This is especially true when travelling on a tightly packed bus, where suddenly, I am no longer apparent by those already seated as the view outside the window becomes the focal point of interests. They may see a flicker of a metal frame, the hint of a weary woman, but then the grey buildings soon become great architectural designs that need their full attention and the busy roads become a place of deep contemplation as I vanish from view.
Sometimes a few kindly gents will see through it’s magical capabilities and offer me their seat instead, but like sightings of the much fated multicoloured Unicorn, these occurrences are few and far between.

Occasionally the spell of invisibility wears off and I am once again seen, but on an already crowded public transport, eye contact is made only briefly before then being averted, whilst heads are quickly bowed.

I remember vividly the time a woman got on the bus. I watched the veins in the back of her hand bulge from the pressure she was putting on her crutches in order to support her frame, something that happens to me way too often. Passengers watched as she scanned around for an empty seat, but whenever she caught someone’s eye, POP! She she would vanish. People promptly became enamoured with their phones, or felt a strong compulsion to talk to the stranger next to them, or to once again, gaze wistfully outside the window at their gloomy surroundings. I asked if she was okay and she told me of her disability and how much pain she was in. We swapped stories about our conditions and that’s when I noticed that not only were we invisible, but that all the passengers had developed magical powers of their own. The power of selective hearing.

But this doesn’t just happen to those of us with walking aids, it can happen to anyone with an illness that doesn’t present itself in an obvious manner. Take my friend L who looks like the ‘perfect picture of health’. Sitting at the front of the bus on seats which are labelled for the elderly or those with a disability, she was set upon by a man who told her that she needed to get up and offer someone else her seat as she ‘didn’t look ill.’ Of course he didn’t know of her brain tumour or the various operations that she underwent. He hadn’t a clue as to all the other health problems that left her deeply depressed and rendered her bed ridden, but by the end of the journey, he soon did and left the bus looking rather sheepish.
That assumption is something that most of us face on a daily basis. The fact that illness is something that needs to be evident in order for it to quantify as being real.

Last year, after much research and feedback from passengers, Transport For London unveiled that they would be introducing badges for people with an invisible illness or disability. The blue badges simply reads, ‘Please offer me a seat.” The problem is, our invisible conditions make us just that, invisible. If people can see a walking stick, or a struggling person and still turn away, are they really going to suddenly take notice of a blue badge? My walking stick marks me out as being different and in a world where physical illness is still seen as a stigma to some, do I want to compound that difference by wearing a blue badge?

A few weeks ago, I travelled across London for a medical appointment. The journey took over an hour, most of which was spent standing. By the time I got to the hospital, I could no longer walk and my spine felt as though it was on the verge of collapse. No one on that bus would give me any kind of eye contact. I could even sense the unease of those that I stood close to as they stared out the window rather than look my way. Old fashioned values no longer prevail. The rules no longer apply when it comes to offering up your seat to the elderly, pregnant women or the disabled, and in a way I completely understand that. people pay a lot of money to use our public transport system so why give up their seat? Well I can think of four reasons. Kindness, compassion, empathy and just plain old good manners.

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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.