The Problem With Fibro…

The problem with Fibromyalgia, is that it is a PR nightmare. Often seen as a trendy disease because “everyone has it”, it is often derided on TV programs, films and in newspaper articles, mediums which also portray those who are affected by it as something as a joke. This is made more so by the fact that there are no outward visible signs of the disease or that there aren’t any definitive blood tests, at least in the UK. (although there is a FM/A test in the US which costs just under 1k) Instead, diagnosis is made by a process of elimination as well the 18 Tender Point Test, the results which few ascertain, can be easily fabricated. Some class it as a modern day pandemic, a hypochondriac’s dream. And because many of its symptoms are often linked to other ailments such as lupus and arthritis, Fibro isn’t really seen as an illness at all, but rather a myriad of symptoms of something yet to be diagnosed.

Fibro’s PR isn’t made any better by the fact that half the medical profession doesn’t believe in it’s existence or insist that it is all in the mind. Something that a few sessions of CBT therapy will sort out. To talk about it is to risk ridicule and disbelief and thus the bad press is set to continue. Some even believe that to talk about it is to enable it. But to talk about it is not the same as enabling it. Talking about it does not continue the illness. As one woman told me, her family demanded that she not speak about her illness as she was “making it real.” But it is real and to talk about it is to bring about awareness and understanding of something that is a genuine and disabling condition to those who live with and suffer through it daily.

There is another problem which backs up the negative attention that Fibromyalgia garners, and that is the disunity among some Fibro groups. Instead of binding together under a common cause, arguments centre around whether it’s an auto-immune illness or not. Whether it is brought on by trauma, illness, injury, is hereditary or congenital, and there’s huge debate on what to call it. Is it a disorder, a disease, a condition, or just classified as widespread pain? Some of these discussion tend to become quite heated with people being cited as “not really having the disease” or being accused of faking it because they dare to have a differing opinion. So how then can those who know nothing about the condition make sense of it when there is so much discord going on within it’s own community?

When Lady Gaga made the announcement that she too suffered from Fibro, she was lauded by some as a possible saviour, a much needed advocate. Someone that the world would listen to and take seriously. She would be the one to put Fibromyalgia on the map. But soon, even she was drowning under a river of scorn as people proclaimed that it’s was okay for her to be ill because she had the money to afford the best medical treatment. How then could she speak out on behalf of the rest of us?

Until we stand together and cease to belittle one another, I fear that Fibromyalgia will never be taken seriously by the public at large and that the majority of us will continue to suffer with the indignity of being seen as “fakers.” We need to stand up and be counted, to come forward and to tell our stories. But above all, we need others to believe that this is real, that we are valid and so is our illness.

talking fibro


The Flu Who Stole Christmas.

Chronic illness is often likened to suffering from the flu 24 hours a day. So imagine having multiple chronic illnesses, plus the actual flu thrown on top, along with a dose of environmental allergies and a flare of TMJ.
Week 3 and I’m having to sleep with my head at an incline. This is to stop my inner organs from shooting out of my mouth and hitting the TV opposite whenever I am beset by a series of dry hacking coughs…which is often. Still, sleeping upright like an animated corpse, does seem to work. I now average a bout of violent coughing at maybe 3 bouts every 10 minutes, whereas if I were to lie down like a normal human being, a bout of OH MY GOD, THERE’S A DEMON SCRAPPING AWAY AT MY THROAT AND ANOTHER ABOUT TO BURST FORTH FROM MY RIBS, cough, usually occurs every few seconds.


I did try to sleep in the prone position last night but was suddenly seized by a coughing fit so violent, that I thought my lungs were about to exit via my arse! I don’t think there’s ever been a time where my ribs have hurt both horizontally and vertically, or where my boobs have come together in such a calamitous collision as to cause a small tidal wave off the coast of Scotland whenever said coughing fit is underway.
Then there’s the mouth, an alimentary canal which is so dry, ancient Egyptians are still constructing Pyramids in my larynx. But don’t worry, the near constant postnasal drip of mucous, is providing a counterbalance to the arid conditions.


And let’s not talk about the gunk that is currently clogging up my ears, (I fear it may be alien in nature) or the mountains of tissues breeding new life forms and hoarded under my pillow. Like Golem getting all protective about his ring, those crumpled pieces of snot papers have also become “MY PRECIOUSES!” For some reason, I derive some form of comfort from having them around…also, I can’t be bothered to get up and deposit them in the bin. But the worst thing has got to be the sinus infection. Every area of my face from my eyes and cheeks to my teeth and jaw, hurts and there have, I admit, been moments where I have contemplated ripping my face off in order to rub some numbing cream onto the infected sinews, muscles and tissues.


Oh and I almost forgot the little men with pickaxes hammering a tunnel to my head by way of my nasal cavities, or the fact that every sodding thing I eat or drink, have taken up issue with their current place of abode, (my stomach) and are continually choosing to evict themselves via either my backdoor belly button or my face-hole…or both…at the same time. So yep, to say this Christmas has been memorable, would be an understatement in the extreme. Next stop, allergy season. I can’t wait!

My Son, My Strength.

Couldn’t sleep last night so spent the early hours of the morning talking to the Womb-Fruit who also couldn’t sleep. Amid our usual talk of stuff and nonsense, he admitted that sometimes, when he hears me crying, he often thinks about me and my “situation.” I asked what he thought about and he answered “you before and you now…but the thought doesn’t last for long.” That kinda ripped at my heart a little.
I can’t imagine how a kid with Aspergers, can even begin to process how his once able and fun-loving mum could turn into…well, me, or how his life, which had once been that of a carefree child, was now one where he was responsible for the well-being of the woman who gave him that life in the first place.

As usual, guilt reared it’s ugly head and I wanted to apologise for being the parent that I was. In my darkest days, I feel an overwhelming sense of regret that he was ever saddled with a mum like me, because in my eyes, he deserves so much more than I can ever give him. Instead, I asked why the thoughts were so fleeting. Was it because the memories of life before were too painful, or was it a case of there’s nothing that can be done to change things so why keep thinking about it? He replied that it was both.
The thing is we’ve never really spoken about when I became ill and how life has changed significantly for the both of us, so this morning was a first. I told him that my tears had nothing to do with him, that just every now and then, the reality of what life has become suddenly hits.

We then talked about all the things that we used to do and the things that we wish we could still do, and lamented the things that we would never do. But where I have a dwindling hope that things will one day change, he was full of optimism that it could yet still happen. I had to tell him how proud I was of him and that I was glad that he had found new friends at college and was finally getting out more and living the life of a young adult. I hated the need he had to stay by my side in case anything happened, although he always protested that it was something that he wanted to do.
He’s out tomorrow with friends and again over the weekend with his dad, but not before assuring me that he will cook enough food for the two days to ensure that I won’t have to do anything. How can I not be proud of such a thoughtful and caring young man? A 16 year old who since the age of 7 when he took on the role of carer, has been my saviour, my strength and my reason to continue to carry on. In that respect, I count myself one of the luckiest women alive.

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?

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


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.