WRITTEN asPAINrations...

Keep on BEing AWARE...of FMS and ME.

2011-05-19T12:58:00.001+01:00

Last week, on the 12th May, which each year is 'International Fibromyalgia and ME/CFS Awareness Day', I posted here in my blog, as 'my May 12th contribution' to raise awareness of the two conditions. However, due to technical difficulties (as you know sometimes happens), the Google Blogger Network went down and all posts that day, apparently globally, were lost. So to not waste my efforts, and after having a particularly painful and stressful week, (as sufferers know, any achievement when living with a chronic illness such as ME or FMS, will occur after much effort and pain) I have decided, with a few minor changes, to post it again. So do please read and ask others to..and whether you are a sufferer, or have a friend or loved one who lives with one or both of the conditions, please continue to raise awareness of these horrible invisible illnesses, and the very important awareness work that occurs, thank you...so here goes...

Are you AWARE?

Are you aware of FIBROMYALGIA and ME/CFS?

Are you aware that May 12th is - 'International Fibromyalgia and ME/CFS Awareness Day?'...

I am, yet although I'm a long time sufferer of Fibromyalgia Syndrome 'and' a Lecturer in Health, with friends, family, and many people I know living with FMS, Chronic Fatigue or both...until a couple of years ago, I was NOT AWARE of this day!

In fact until last year, I was not even aware of the UK National Fibromyalgia Awareness week that falls on the first week in September (this year being the 4th to 11th September 2011)...until a friend and ex-colleague of mine organised a display in the FE College where I was lecturing.

When seeing all the symptoms that I live with on a daily basis, staring down at me from the display, on beautifully written words on pretty coloured card, it hit home hard, I had to face it, I have Fibromyalgia...and I have to fight it!

So...now I am AWARE, and I am aware of the AWARENESS...So let's all get aware, and continue to raise the awareness of FIBROMYALGIA and ME/CFS.

Useful links:-
Fibromyalgia Association UK
Action for ME
Get an ME/Fibro Twibbon

Have a pain free, stress free, happy day.

I'm NOT a WEEd...my bladder is!

2011-05-11T00:06:00.002+01:00

Do you feel irritated?...I do!

I have been feeling a bit irritated over the past few days!!..as I have on many occasions...one reason...my 'IRRITABLE BLADdEr'!! My bladder has felt so weak, I have been back and forth to the lavatory during the day, and it's had me awake in the night too...let's face it!...my weak bladder has been a real 'WEEd'!

Suffering from the painful symptoms of an irritable bladder and associated conditions, as some readers will know, can be quite debilitating, with stinging, burning and smarting sensations that feel somewhat like glass (or a sharp blade) cutting away inside.

Unfortunately, suffering from an irritable bladder (with often no other sign of infection) is just another symptom in the collection of symptoms that make Fibromyalgia a 'Syndrome'. An irritable bladder, otherwise known as 'Interstitial Cystitis' typically shows symptoms in addition to the pain mentioned as; low bladder capacity, bladder spasms; bladder frequency and incontinence...and (sometimes embarrassingly), I have had them all! Please click here for more information on bladder problems in Fibromyalgia and how to treat the symptoms.

I first had problems with my bladder when I was a young child and from the age of six, I spent the following two years in and out of hospital. During that time the doctors puzzled over the reasons behind my constant tears, reluctance to pass urine and complaints of pains in my back and tummy. When testing my urine, sometimes there was infection, sometimes not and the final diagnosis was 'in-conclusive' and put down to my 'personality'. From this experience I was left with a scar on my kidney and myself wondering for a very long time...what was actually wrong with me and my bladder? Only years later, after my FMS diagnosis, was an 'irritable bladder' explanation given.

Of course, due to the physiological design of having a shorter urethra than men, women are more prone to infections of the urinary tract and the possibility of infection always needs to be ruled out...please click here for explanations of urinary tract infections in women. As you know, If you are having unusual or consistent symptoms of pain, burning and feelings of urgency to pass urine, or other types of pelvic pain, you should first go to your doctors to have the possibility of infection ruled out, however if no infection is found, it may be the case...as with myself, that you are suffering from 'interstitial cystitis' otherwise known as 'irritable bladder'...and mine can be very irritable!

In addition to 'Interstitial Cystitis' there are other conditions, for example: 'Pudendal Neuralgia' & 'Pelvic Floor Dysfunction' that commonly occur in women and cause pain in the pelvic area, and like many other illnesses, they are invisible to others and quite often go unnoticed. There is a wonderful blog : 'Silent Tears: Chronic Pelvic and Bladder Pain in Women' that aims at raising awareness of bladder and pelvic pain conditions and a great website : 'Pretty with Pelvic Pain', written by the same author, that has a number of informative articles. Whether you suffer from a bladder or pelvic pain condition, as I do, or you are just interested in finding out more about bladder and pelvic conditions, the sites are definitely worth a look!

So do you feel irritated? Are you uncomfortable? In pain? Do you need to pop to the toilet?...I do.

However, because I have a 'weak', 'irritable' bladder it doesn't mean that I'm weak...I'm not a WEEd!!....and neither are you, because living with 'invisible', 'chronic' illness can only make us stronger...can't it?

Have a comfortable, pain free, relaxing day.

DiZzY HeIgHtS

2011-05-05T21:56:00.001+01:00

Do you ever get DIzZy? ((((()))))) Does your world ever sPiN ArOuNd AnD ArOuNd? ((((()))))

Mine does, on a regular basis....and no, I'm not referring to any romantic surges of emotion towards my beloved, with light headed feelings of love toppling me off balance...and I'm not talking about the result of drinking 'one too many' alcoholic beverages...I'm talking about the horrible dizzy spells that sufferers get as a result of living with FiBrOmYaLgIa AnD/Or MeNiErE's DiSeAsE...and I have both!

I was first diagnosed with Meniere's Disease over a decade ago when the ENT Consultant broke the news, this happened after a series of examinations and investigations that included hearing tests and an MRI (Magnetic Resonance) scan. Only a couple of years before I had received the 'IT' (Fibromyalgia) diagnosis, (Oh and let's not forget the IBS diagnosis, 'as if any sufferer can!')...and then being informed that I had yet another condition to deal with, was not what I wanted to hear! I was already putting on a brave face to the world....how on 'earth' (and sometimes with the dizziness, I came back down to it with a 'bang') was I going to deal with this?...True, Meniere's isn't going to kill me, none of the conditions are a 'death sentence', however, all three conditions are:- 'Chronic!...'Invisible' and...'Life Changing'.

Meniere's Disease is a disorder of the inner ear, caused by a build-up of fluid in the 'Labyrinth'..(sounds exciting, but there are no magical characters in there!), leading to four main symptom's:- 'Tinnitus', (ringing & ticking in the ear), 'Vertigo' (mild to severe dizziness), 'Deafness' (short term or permanent), and a feeling of 'fullness in the ear'. I suffer from all of the symptoms mentioned. When telling people that I have the condition, I usually hear, "men who?" or "is it catching?"...If you have never heard of Meniere's Disease or you would like to know more about the condition, please click here to find out about symptoms, treatment and prognosis.

However, as any Fibromyalgia sufferer will know, feeling dizzy is also one of the symptoms that occur as part of the 'Syndrome', and hundreds of thousands of people who are living with FMS are dealing with severe balance problems and dizzy spells on a regular basis. Yes all of our worlds are spinning...but for FMS sufferers (or Meniere's sufferers) the world is sometimes spinning too fast! Please click here for information about balance problems and dizziness in FMS sufferers.

Of course, due to my 'double-dizzy-diagnosis', I do not actually know whether my vertigo and balance problems are due to the Fibromyalgia or the Meniere's Disease?...that confusion alone puts my head in a sPiN!!... and much to my embarrassment, on many occasions, I've actually fallen onto poor unsuspecting individuals... yes I've fallen, onto members of the public, students and even my boss!...I've been accused of being intoxicated, high on an illegal drug or away with the fairies! Usually I just make a joke in an attempt to lighten the situation, however, in reality, it is no laughing matter, severe dizziness 'can be' and 'is' dangerous! So, for those of us who suffer from balance problems and vertigo, we just have to be careful...right?

I've been advised over the years (by often well-meaning people) that with respect to my health, I'm trying to do too much, I need to stop being so ambitious, calm down, listen to my body...stop looking at the world from DiZzY HeIgHts!...Am I looking at the world from too high a perpective?.. Yes I get dizzy, I lose my balance, and suffer all the other pain and symptoms, but why should the horrible conditions stop me (or you) having aspirations?

If I'm looking at the world from DiZzY HeIgHtS, then I like it from up here...Yes I have 'invisible' illnesses, but they don't have me (or you)...and from up here I can shout about them...and so can you! So let's get shouting about Fibromyalgia, Meniere's, Irritable Bowel and other 'invisible illnesses', even if it makes us more DiZzY...we can handle, can't we?

Have a relaxing, pain free, vertigo free day.

SLEEP DeprivatiON

2011-04-28T21:42:00.002+01:00

Are you feeling tired right now?....I am, because once again, last night, I have lain awake for over two and a half hours, after waking from my much needed sleep.

In an attempt to get back to my wonderful slumber.....I tossed and turned, rolled and stretched, I kicked the quilt off, pulled it back on, removed pillows, replaced pillows...I opened the door, shut the door (to block out the light from the landing)....I went downstairs to have some warm milk, back up the stairs and in a final attempt to get back to sleep, I put the pillow over my head (nearly suffocating myself!)....then the birds outside started to sing!!...Oh how I wish I could 'SLEEP ON'...sleep on, right through the night......until the blessed morning!!

SLEEP DeprivatiON....as many readers will know, is a common occurrence for Fibromyalgia sufferers. Studies into the links between sleep disturbance and FMS, using EEG recordings of alpha waves, have shown that many individuals with the syndrome actually have a sleep disorder called 'Alpha EEG Anomaly', where deep sleep is lost through abnormal bursts of activity (showing up in the EEG readings as rapid 'alpha' brain waves in place of slower 'delta' brain waves) and thus waking when we should be in a lovely deep sleep, resulting in rising in the morning.......feeling as if we haven't slept at all, with pain, stiffness, fibro fog, slurred speach and the 'Big F' (fatigue)!

I have not personally had the pleasure of having an Electroencephalograph (EEG) machine attached to my brain, however I am quite certain that if I were to have my 'alpha' and 'delta' waves monitored and recorded, the annoying 'alpha' would be showing up during my sleep cycle where the darling 'delta' should be!

Please click the attachment here for more information on FMS and sleep disorders:- http://www.fibromyalgia-symptoms.org/fibromyalgia_sleep_disorders.html

As you will have read, 'Alpha EEG Anomaly' is not the only sleep disorder that individuals with FMS may have, many sufferers live with multiple sleep disorders, for example, 'Insomnia', 'Sleep Apnea', 'Jerky Legs' (and arms) and 'Upper Airway Resistance Syndrome', to name a few. Of course any single sleep disorder can have an enormous impact on a sufferers life, affecting all physical, intellectual, emotional and social aspects. You will see by clicking on the further link below, that sleep disorders are generally catagorised into the following four groups:-

1. Problems with falling and staying asleep
2. Problems with staying awake
3. Problems with sticking to a regular sleep pattern
4. Unusual behavoirs during sleep

Click here:- http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001803/

Like many FMS and other 'invisible illness' sufferers, I generally have problems with:-
1.Falling and staying asleep
2. Staying awake.

There has been many an occasion when I have had a terrible night sleeping and found it very hard to keep awake at work the following day. This often happened when I sat down at my computer after returning from a teaching session...which can be quite embarrassing in the middle of a busy college team room (jokes about being out on the tiles all night or partying hard were a common occurrence). If only once in a while the jokes were true, but alas...FMS likes to rule.

I asked at the beginning of this post, are you tired? If like me you have a chronic illness and/or a sleep disorder (diagnosed or not), then, like me...you most probably are. It is a common assumption that regular restorative sleep is the key to better health, and I believe this to be true... if we can manage our sleep disorders, that is half that battle dealt with in the very long war against our invisible and chronic illnesses...because illness cannot win, can it?

Wishing you a happy, pain free, inspiring day...and a restful night...sleep on!

LOOse Woman

2011-04-21T22:23:00.001+01:00

Are you a LOOse woman or man?...

Do you sometimes have the sudden need to undo your clothing? Do you start running in a certain direction when you have the 'urge' maybe two, three or four times a day?

Unfortunately for some, living with Fibromyalgia does NOT turn a sufferer into a raving nymphomaniac......the kind of 'loose' that I am talking about is far from attractive, sexy or a turn on...to the contrary...the kind of 'loose' that I am talking about can also involve 'stuck', 'bloat', 'gas' and 'growl', 'noise' and 'pain'!!.....

Yes, I am talking about the dreaded 'IRRITABLE BOWEL Syndrome' (IBS)...and it STINKS!

Having an 'Irritable Bowel' is a common occurence for individuals with Fibromyalgia, however as many of you will know, IBS is a 'Syndrome' in itself, that can have a profound effect on the lives of sufferers on a daily basis. If you suffer from an irritable bowel, you will know how disabling (and upsetting) it can be at times. The range of symptoms, from constipation and bloating, to stomach cramps and diarrhoea can be very distressing......I know.

Please see the useful link below for information on IBS and the four different parts of the gut that are involved in producing the different symptoms that occur:-

http://www.netdoctor.co.uk/diseases/facts/irritablecolon.html

IBS has had me 'on the run' for years, and my symptoms have involved all four sections of my gut, however over the last few years my symptoms have suggested that most of my problems are revolving around my Oesophagus and Large Bowel (or intestine). I was originally diagnosed with the condition after blood tests and a Colonoscopy, which failed to show up anything significant in the results, and like FMS, the diagnosis was made only after doctors had ruled out other diseases such as Crohn's Disease & Ulcerative Colitis.

However I do wonder, whether my IBS is not a stand-alone condition (as it was diagnosed) but it is in fact, just another set of symptoms, in the collection of symptoms that I have with the FMS, ...and I'm sure that many of you who have been diagnosed with both conditions, wonder that too...do you?

IBS is quite often referred to as having a co-morbidity with Fibromyalgia....I just refer to them as horrid partners in crime!! Please see the link here for the relationships between IBS and FMS. http://nfra.net/fibromyalgia-IBS.htm

I asked if you are a LOOse woman or man? Are you?...

Now you know that I can be a LOOse woman at times (or bloated or stuck)...and it's nothing to be embarrassed about...is it? If it is, why should we be embarrassed? If we can put up with so much in our lives....we can deal with IBS...right?

Have a pain free, relaxing, comfortable day.

IN PaIN

2011-04-18T14:07:00.001+01:00

Are you in PaIN today? I am.......I am always IN PaIN in one way or another and the PaIN is always IN Me!

To look at me, as anyone who lives with an 'invisible' illness will know, you might think that I look totally fine...you might even say that I look good, or well, or nice, that's a normal thing (and a nice thing) for a person with Fibromyalgia to hear and accept, we are accustomed to it, aren't we?

But should we be accustomed to it? Or do we 'really' want to look sick so that others will notice and take action? Give us sympathy? Or empathy? Surely if we 'look' sick, we wouldn't feel so alone in our suffering? So isolated? But who wants to 'look' sick?........not me!

That is the price a person living with an 'invisible illness' has to pay, it is a catch twenty two situation....sometimes if the pain is particularly overwhelming or the fatigue has taken over, people may say 'you're not looking yourself today' or 'you look different, is everything OK?'...then you may think....'Wow, someone has noticed'!!!........But do we actually want people to notice at all? It's a tough one, isn't it?.....

Of course, as we all know there are many different kinds of pain, physical, emotional, spiritual, ......yesterday my left thigh was 'getting it'.......what my poor leg had done wrong I don't know?......however the naughty 'PaIN Goblin' was jumping up and down on my leg and poking it with a sharp stick....horrible little creature! That horrible Goblin was also jumping on my head and my back..and in the evening it attacked my right foot!!! How I despise that little creature! Once again, through frustration and feeling utterly fatigued at having to endure this attack, (when all I wanted to do was enjoy a nice Sunday with my husband and youngest), I ended up in tears. I wonder where that Goblin comes from? I wish it would just return and LEAVE ME ALONE!!!!

Unfortunately, I have known the PaIN Goblin a very long time.....the horrible creature has made me cry and caused me no end of emotional and physical suffering for years, you see........ I was first diagnosed with Fibromyalgia over 15 years ago....

I was told that I was 'suffering' with the symptoms of FMS at a time when doctors had not long 'given' the collection of symptoms a 'name'.....what was my reaction?.....DENIAL!!! Denial that the condition existed, believing that I had just been 'fobbed off'.....which then, over the following years, lead to more PaIN.... IN Me! I tried to ignore the dreaded Goblin!

However, now I do not, and will not, deny to myself that I have this illness, I have accepted 'IT', to make myself as well as I possibly can be, and to raise awareness of the syndrome and to hopefully help other sufferers, of both FMS and other hidden illnesses.

Whether you are experiencing any kind of emotional or physical pain or both?.....never deny that the pain is 'real', and that it needs accepting, only then can you help yourself to be as well as you possibly CAN be.

Are you IN PaIN? Is the PaIN IN you? It is in me too, and we are the best people to make ourselves better..aren't we?

Have a happy, relaxing and pain free day..

DePRESSion

2011-04-14T19:01:00.005+01:00

Do you ever get DePRESSed? ...I Do!!

As sufferers of FibroMYalgia will know, DePRESSion is one symptom of the syndrome that comes to visit us sometimes! Another un-welcome guest! It comes into your world, pUShing you down (and around), evoking feelings of being somewhat pressed, squashed, sat on, (maybe even spat on! ), leaving you feeling insignificant…a failure…smALL.

"'You are probably just depressed, we all get depressed now and then" I have often heard well meaning people say (So you are telling me to just buck my ideas up right? WTF?!! *Voice in my head*)........for anyone with FM, suffering from a multitude of symptoms on a daily basis that includes: widespread pain, stiffness, fatigue, cognitive dysfunction, irritable bowel, irritable bladder, etc., etc.....it CAN be, and IS very DePRESSing!

Please click the link here for information on FMS and Depression:- http://www.cks.nhs.uk/patient_information_leaflet/Fibromyalgia

However, as many of you will know, FMS is not the only 'invisible illness' where Depression is an additional unwelcome visitor, many people living with such conditions as Myalgic Encephalomyelitis (ME) otherwise known as Chronic Fatigue Syndrome (CFS), Diabetes, Menieres Disease (which I also live with), Heart Disease, Arthritis and Chemical Sensitivity amongst many others, suffer from depression as a result of living with their illnesses.

Of course, Depression itself is an illness that affects millions of people, and is often quoted as 'hidden'. Different forms of Depression, for example, Reactive Depression, Bipolar Disorder, Seasonal Affective Disorder, and Post Natal Depression, including other mental health illnesses, such as Borderline Personality Disorder, Obsessive Compulsive Disorder & Eating Disorders etc, are all conditions that people live with and may go unnoticed.

Please see this useful link here:- http://www.mind.org.uk/help/diagnoses_and_conditions

You (or I) should never feel ashamed of suffering from depression, or any other mental health illness, life is stressful and can be very painful....and we human beings are sensitive creatures, aren't we?

Do you ever get DePRESSed? Of course you do...I do too.

Have a relaxing, pain free and stress free day.

Fatigue....with a big F!

2011-04-11T17:22:00.001+01:00

I've often wondered if I suffer from Chronic Fatigue Syndrome in addition to Fibromyalgia or whether they may in fact be one and the same illness? One of the symptoms that I have on a regular basis that some of you may be able to relate to is; overwhelming, debilitating, indiscriminate, and impromptu, FATIGUE...the 'Big F'!..... I loathe the F'ing 'Big F'!

"We all get tired and fatigued at times", I have often been told.... however, what IS the difference between normal fatigue and the 'big F' fatigue that I am talking about?

'Normal Fatigue', occurs in normal healthy individuals as a response to mental or physical activity, for example; after a period of over exertion such as exercise, or after eating a heavy meal, or lack of sleep or after a period of stress, such as after taking exams. Recovery from normal fatigue comes after a period of rest, and a healthy diet. However 'normal fatigue' can turn to 'Abnormal Fatigue' if a person is put through a prolonged period of physical or emotional exertion or stress, such as working ridiculously long hours for many months, whilst trying to meet tight deadlines or suffering from prolonged abuse. There are also many illnesses, such as: Addison's Disease, Anorexia, Diabetis & Thyroid problems to name but a few, that present with symptoms that include abnormal fatigue.

'Big F' fatigue is 'Abnormal Fatigue' and is the kind of fatigue that I suffer from, however... mine apparently, is part of my Fibromyalgia Syndrome..or is it? Do I have Chronic Fatigue Syndrome and not have FM at all? I was diagnosed with FM over 15 years ago now and have been living with 'IT' and dealing with 'IT' for all of that time....like an unwanted guest..that I know so well.

But......what is the difference between Fibromyalgia and Chronic Fatigue Syndrome you may be asking?

From what research findings have told us so far...not a lot....enough to make a distinction, however there are so many similarities that many doctors will class it as one and the same. Please click on the link below to the Fibromyalgia Association UK, to read up on the distinctions between the two conditions, which are both equally debilitating as anyone who suffers from either (or both) of the conditions will know:-

http://www.ukfibromyalgia.com/what-is-fm.html

Although more prevalent in women, Fibromyalgia and Chronic Fatigue Syndrome can affect any individual of any age or background. A young woman, Michelle Klein, who was diagnosed with CFS when she was just 16 years of age, has decided to write a book about her experiences living with the condition, information from which can be found here:- http://www.facebook.com/cfsmonster

The sad thing is that there are millions of people all over the world who have been diagnosed with FM and/or CFS, from all ages and all backgrounds, and for the millions of people who do suffer, there still exists discrimination and ignorance......... and with that, comes more pain.

So do I have FM or actually CFS? Or are they just one and the same? Many medical experts are still baffled, however what I do know is that I have the 'Big F' come visit me on a regular basis, in fact, 'Big F' is here now, so I'm off.....

Have a happy, pain free and stress free day.

WRITTEN asPAINrations.....is this where it begins?

2011-04-07T14:53:00.003+01:00

So where do I begin? Where do any of us begin when there is so much to say and yet we 'feel' too much to think, talk or simply function?

Today to be honest I'm feeling a little numb...some may say dumb!....my Fibromyalgia has hit me like a hammer the last couple of days, it has beat me up, thrown a fishing net over me and told me I'm a blithering idiot, (actually that was me when I looked in the mirror).

So why did you tell yourself that you are a blithering idiot, you may ask? To answer.....I decided to 'tweet' last night like a good little twitterer on twitter...'Living with Fibromyalgia is like being in an abusive relationship', because.... for any of you that have the condition, you will know that it can leave you feeling pretty useless at times, down-trodden, restricted and unlovable. FM can affect your whole being. Over the last couple of days I have felt so fatigued, in pain, tearful, sensitive and angry that once again, 'IT' is here.

I call Fibromyalgia 'IT' because to me it's a thing that is annoying, 'IT' gets in my way, stops me being who I want to be. 'IT' stops me feeling perfect, womanly, sexy, lovable, worthy, 'IT' stops me being 'me'!..... Or does it? Yes, I have Fibromyalgia, 'get over it' (voice in my head)...but it doesn't have me!

So, with that, Iv'e decided to write a book.....'WRITTEN asPAINrations - a story of pain and determination whilst living with invisible illness'.....it's a semi-autobiographical novel, about a woman (like me) living with the condition and other invisible, chronic illnesses...and how, despite 'IT' being a part of her life, 'IT' is 'NOT' going to own her life!

My hope is that the book will inspire others who live with invisible or 'hidden' illnesses or other kinds of pain, whether it be physical or emotional or both...to fight, carry on and pursue their dreams, whether it be in writing or something else.

I asked in todays post title 'WRITTEN asPAINrations - is this where it begins?'....well, I believe it is......do you?

Have a happy, pain free, inspiring day.