Josanne Cassar | Living in constant pain

Many know him as a very talented actor who has taken part in numerous theatrical productions. But a few years ago, everything abruptly changed for Kevin Drake. Here he shares his story about what it means to suffer from M.E./F.M.

M.E. & FM (Myalgic Encephalomyelitis & Fibro Myalgia) ARE NOT and SHOULD NOT be referred to as CFS/Chronic Fatigue Syndrome (a myth which is unfortunately being perpetuated by the media and by a few practitioners who, quite frankly, should update their medical libraries and research efforts.

CFS was, bluntly put, a one-size-fits-all term to cover a multitude of conditions that were either latent diseases in early stages making diagnosis more difficult, or else conditions with a set of similar symptons, more problematic to test and diagnose until recently. Chronic fatigue (in many and varying degrees and forms) is simply ONE of the symtoms of M.E./F.M. Most of the international medical community’s more authoritative specialists now appear to agree that M.E. and F.M are progressive, degenerative neurological conditions and diseases that have a whole plethora of debilitating symptoms, provoking an equally impressive range of secondary and related disorders.

The eventual recovery rate from for this condition is calculated to be around 5% (yes, FIVE per cent…. One in twenty have a chance of getting ‘better’ – whatever ‘better’ may be. The conditions of ME sufferers vary in that while some may actually be able to function as close to normal as possible for a while, a good many others are bed-bound, home-bound, or suffer from a wide range of depleted mobility and energy (physical and mental) problems that progress and spike constantly.

Constant, severe pain is a condition common to all of us. Relapses are equally frequent, brought about, at times, by the least exertion possible. For many of us, the idea of a ‘normal’ life, from actions as simple as bending down to pick up a piece of fluff at will, reading at leisure, driving, to holding down a job, practicising a profession and even being intimate with your significant other (these things everyone takes so much for granted as par for the course) all these require a huge effort to accomplish, when it is at all possible to do so. These chronic difficukties have a direct bearing on family life, basic socializing, one’s love life, profession and, of course, income. Nevertheless, we are still being discriminated against in this country of ours.

The majority of us (those lucky enough to have actually been diagnosed) know that we will never be able to lead a normal life, a life we once knew and took for granted. Many of us have very little to look forward to except for some miraculous medical breakthrough. Reality and statistics paint a very different picture.

Speaking for myself, the future is frightening. Terrifying. If the present is already very hard – severely diminished income, depleted energy, concentration, mobility, increased pain epicentres and intensity, increased anxiety, depression and of course, tonnes of frustration at your progressive inability to cope with daily life and seeing yourself degenerating while-u-wait. It’s not pretty.

Your appetite goes or is replaced by consistent pain-induced nausea, side-effects of medication, metabolism going haywire etc. etc. In under two years I have lost some 50 kilos in weight – without dieting, without trying. The cherry on the icing of the cake, then, is the accumulated cost of meds and treatment – a good number of which are ‘trial-and-error’ drugs that for the most part have little or no significant positive effect but just help to occasionally reduce discomfort. On average I spend some 400 Euros a month on meds and treatment. I’ve had to go on reduced hours at work for obvious reasons – thankfully I was given the opportunity to do so – which means I now earn about half of what I used to. Expenses have sky-rocketed. Added to all the problems, pain, discomfort, anxiety, frustration, fear etc. we now add into the mix the cash-flow crisis.

Do I need to mention the disappearance of any self-esteem, confidence, motivation, enthusiasm, energy, optimism etc. or is it so effing obvious that it goes without saying? The bottom line is that ME/FM sufferers (and I repeat NOT CFS!), bar none, all have the unenviable and uphill task of attempting to retain a modicum of dignity in a life already rent asunder by the hurricane-like havoc that the condition wreaks.

And yet, and YET, the powers that be continue to ignore our situation and plight in what can only be termed an unbelievable manner. In a few weeks we will be marking ME/FM awareness week. I simply ask you who know me, and even those who don’t, to take a couple of minutes of your time to try and understand what our condition REALLY is and, where possible, inform others accordingly. The public’s being unaware of facts and realities is one of the hugest problems we face.

Thanks for your time, your attention and your empathy and solidarity.

14 comments

Ruth DeBono | April 13, 2012 at 7:04 pm | Reply
Dear Josanne,

I too have Fibromyalgia which thankfully has been diagnosed about 8 years ago after a lot of doctors and family members thinking of me as a hypochondriac.I have been changing doctors for more than 25 years each telling me I have nothing wrong it’s just in my mind!!! I finally managed to find a good doctor who is aware of my situation and seriously understands and not only, he gives me my time to explain and complain and re-complain of my ailments, them being exactly like the above except for the increase in weight instead of decrease.

The worst in my opinion is that we look ok from the outside. People keep complimenting me for how good I look while I am crying inside with pain and depression. I try to hide my ailments everyday not because I am ashamed but because no one is willing to understand or simply by ignorance on the matter. The one thing that frustrates me the most is that the people who should really care about me are at times at a stall as to what to do with my complaints. They try to tell me “It will be ok”! but what do they know? They simply try to make it better but how??? As soon as I tend to explain or moan out of sudden pain people seem to become afflicted and move away.

In my opinion the higher ranks should be aware of our situations and physical needs. We still have to work as in the above article financial needs make it impossible for both parents not to work. I have to work full time and when I arrive home I don’t have the energy to continue with my house chores. I had to stop doing the one thing I loved most teaching martial arts and do voluntary work. Thankfully my husband helps me a lot but the guilty feeling of not being able to help around the house makes it the more distressful. Once I asked a parliamentary member what would they intend to do about fibromyalgia but obviously I got no answer!!!

We should all make a front and do something about the matter. As a note in my opinion even family members should be made aware of how to help the patient, it would certainly ease the worry and struggle of us sufferers trying to live a normal life.

regards,

Ruth DeBono.
Philip Pace | April 14, 2012 at 10:49 am | Reply
Dear Josanne,
I met Kevin some months ago in Valletta and though we only talked for a few minutes, I always like the way that he talks as he has a positive attitude and shows interest in what other people do and talking to him is a refreshing experience.
I can understand what he wrote about as I was directly involved with something different to what Kevin is suffering from.
I lost father in 1984 and also my brother Godwin in 2005, both from Parkinson disease complications. The frustration that I saw and felt from both cannot be described.
All I can say to Kevin is keep your chin up.
To the powers that he referred to, they should be ashamed as they are failing to keep up with the times as new information and knowledge on the diseases, ailments etc are being made known to all but are not hidden for the benefit of a few as it was in other times. They simply cannot disregard or overule something important such as this so that they simply fulfill any financial target that is set upon them.
I am of the opinion that if someone close to them would be diagnosed with the same condition they would do something in the right direction.
Kevin be strong!
You have my support.
Michelle Urpani | April 14, 2012 at 1:44 pm | Reply
Dear Josanne,
I too am a suffer of F.M. I’ve been diagnosed about 6 years ago but my pains started about 15 years ago with terrible headaches and neck pains. No one could tell me what I had…blood test were all ok but they couldn’t understand from where the pain was coming as I was “normal”. So i was put on anti-depressants which made me even worse as I could not be myself with such strong drugs (D.H.C.) plus I had a 5 year old to take care of solo as I’m separated. All I could do was lie down and sleep most of the time just to not feel bad for myself and not to think about life. Waking up from my sleeping was even worse as you feel even more exhausted. Today I still have my pains which I have never got rid of. I try to get through them by going for walks which have made me feel better. the worst part is even though the people around you know that you have F.M. they just don’t understand you when you just don’t feel like anyone. They think it’s a kind of selfishness. They don’t understand that we cannot be forced to do what anybody tells us. Whether we can or not is entirely up to us because they do not know what we are experiencing deep down. We’re “good” one day and “terrible” the next. Mood swings are a nightmare and to think that some people even tell you that you are exaggerating stuff is sad. Stress is my killer and nightmare and I live in such a life. Why? Believe me I don’t know…just wish the word never existed. trying to please everyone, having to do things you just don’t like for the sake of other people…these are the things that make me tense and so all hell breaks loose.
I feel now that my sight is getting worse and my tremors are getting worse but at the moment my pain is there and knowing that summer is here soon I feel better. I just hate winter and cold weather especially in Malta as it is so humid and I can’t were heavy clothes as I feel like I’m in a strait jacket. I love the sun and the heat and it makes me feel much better.
Anyways I think I’ve said enough about this silent illness. I wish that all people who tell me “yes, I understand!!” really know what they’re saying because believe me some of them don’t.
I wish you all the luck I can give you and I will always keep you in my prayers. It was nice chatting with someone who really knows what my kind of pain feels like.
Good Bless you friend.
juliette | April 14, 2012 at 2:21 pm | Reply
Hi, I don;t have ME?FM but I have had glandular fever twice so I can really relate. I get nerve pain but mine’s in connection with arthritic changes, and see a physiotherapist (physical therapist) for it. The prescribed exercises really help. I just wanted to mention it because I think “allied health” therapies are a bit overlooked sometimes. Just because there’s no cure doesn’t mean there’s no hope :) Stay strong, ppl.
CJM | April 14, 2012 at 4:15 pm | Reply
Hi all … i too am an FM patient … it took years to be diagnosed for what it is during which needless to say countless doctors merely said that the pain is all in my mind. i can therefore understand what you so desperately want to say and the anger and frustration and extreme depressive moods because yes it is hell living with this invisible condition/disease call it whatever you like. One thing I have however refused to do is to take the meds which at the end are on a trial and error basis and not really specific for FM. The only way i know how to fight FM is with my mind. Sometimes its close to impossible to get out of bed in the morning but i try and try and try until i do it. The down side of this is that the immense effort to do these tiny little things during the day will frequently use up all my energy and after a day at work I come home to my precious son who I simply have to dedicate at least 2 hours a day to. This generally wipes me out and by the time he falls asleep I am literally wiped out. The result is that my personal life with my partner is what suffers most, something he does not understand which is also understandable since it is impossible to understand what FM is without experiencing it first hand.

On a separate note, I will be glad to participate in any way I can in the FM awareness week. If you can, please keep me posted.
Beatrice Gatt | April 14, 2012 at 8:03 pm | Reply
I was diagnosed with ME 19yrs ago and that only because I had a very understanding GP. Believe me, getting a diagnosis in itself is a major hurdle for most ME patients. Over the years I have gone from periods of being bed-bound for months on end, to periods of remission. Unfortunately, the latter have mostly been short-lived and generally the disease is degenerative. I have faced scepticism and even ridicule from certain sectors of the medical profession, been misunderstood at times, by both family and friends. There is a lot that can be done to relieve the suffering of ME patients and it is time that the authorities stepped in. Education of the medical profession for starters, would help!
Claire | April 16, 2012 at 10:50 pm | Reply
Hi, although not like Kevin, I too suffer from a condition which causes constant pain. It’s vulvodynia, something nobody speaks about. I’ve had it for almost 4 years now and there is no treatment and no cure for it. I don’t feel like a normal woman anymore since I’ve had it. Hang on Kevin.
pamela muscat | April 16, 2012 at 11:43 pm | Reply
Wow Kevin..had no idea! hang in there! I pray that you will be able to handle your pain day by day without letting it erode at your nerves, that your financial situation will somehow resolve itself ( how can we support you?) and that your frame of mind will be strong once again!!! don’t let this debilitating illness take away your awesome sense of humour and your amazing wit! I know that it is easier said than done…but never stop trying!!! Use your talents to raise awareness as you are doing…you never know…oh and congrats on your new relationship!!:)) Please let us know how we can help/support you!xxx
Joanne Vassallo | April 18, 2012 at 2:51 pm | Reply
Hello everyone who knows what this world is all about!!!

I have read with great interest after being forwarded with this site from a friend on FB. First and foremost i sympathize with Mr Drake and admire him for his great courage to come out in the open and talk about his debilitating conditions.

I was diagnosed with severe Fibromyalgia since 2008. I am 44 years old. Apparently just like some of you above, have visited thousands of doctors etc to find out what was wrong with me. Eventually after many medical examinations the word FIBROMYALGIA introduced itself to me by name. i had no idea what it was or that it existed before.

Since suffering most full conditions of FM, my life turned around from day to night. Ive been given anti depressants and whatever possible to help me get through. Some increased the pain, whilst others did help me get better. i try not to believe that i have it, yet my body comes to a halt at times and i just cannot hide it. With brain fogg and huge muscle and tissue pain which FM is named after i have to struggle to work every day and to try to keep as normal as possible. Some of those around me whom i so looked upon at my most difficult times have either disappeared or have change their attitude with me and treat me as an invalid useless person. At work it is difficult too because most people think i am inventing excuses which is by far not the case. Some tell me to get a life cause all this that i say i am feeling is all in the brain.

Please do keep me informed if you intend creating further awareness with regards to these conditions. I would like to be involved maybe we may help eachother. My number is 9946 0446. Thanks and regards

Josanne | April 18, 2012 at 3:12 pm | Reply
Thank you Joanne and to all those who have posted their personal stories here. I never imagined that so many people suffered from this condition and I admire all of you for speaking out. Please note that there are two support groups on Facebook, namely Fibromyalgia Facebook group in Malta and ME Sufferers Malta and I suggest you join them so that you can get in touch with fellow sufferers who can understand what you are going through.

Kevin J Drake | April 19, 2012 at 4:06 pm | Reply
Hi all. Thanks very much Josanne for the ‘plug’ – As you can see it’s had a very unexpected but very welcome effect. We’re so used to whispers falling on deaf ears that it’s a bit of a culture shock!. As Josanne pointed out, there are two dedicated sufferers’ groups on FB and through them, you can make contact with others, receive news on developments, and basically add a few decibels to the voice we’re trying to find out there. today’s been a particularly awful day and it’s taken me almost 30 minutes to concentrate and get the energy to write this little note of thanks. But… It goes with the territory. I’ve posted this 4 minute ME Awareness clip for ME Awareness 2012 on my FB page… Please feel free to share as much as possible. Any appeals etc. through the social media particularly would be great if you can find it in you to do so. Hope your goods days outnumber the bad, hope we can start to claw back some dignity from a condition, situation, public unawareness, and a discriminatory attitude that leaves you with precious little dignity at all! Shalom to you all. Kev
Kevin J Drake | April 19, 2012 at 4:10 pm | Reply
http://www.youtube.com/watch?v=ZgAa-l-N1Eg
Paulene Attard | August 11, 2012 at 11:01 am | Reply
Dear Josanne, I can relate with Kevin and all other FM sufferers out there. I was diagnosed with Fibromyalgia four years ago but looking back I can say that in all probabilities I have plagued with FM since a young age because I always remember myself complaining of various aches and pains in my body and severe headaches, join aches, tummy aches and other ailments. About five years ago, my neck and upper body pain intensified and trying to convince myself that I was getting older and it was arthritic pain, I tried to get on with it. BUT the condition got the worst of me and I became extremely emotional and the pain became unbearable. I was diagnosed and immediately went all out to cure myself taking all sort of medications and doing every single alternative therapy available including expensive treatments abroad. Now I know better, I have to live with this condition and really and truly there is no cure. Perhaps, some changes in diet and lifestyle, reducing stress and surrounding yourself with things that make you happy, help aleviate the pain. I have good days and bad days. On the good days I have the pain alright, but I can just bear it. On bad days, I can hardly move, my body sends me pain signals all the time, from every part of my body. My neck, shoulders, back, head, stomach, tummy, hips, knees, hands, feet, you name it!! Oh, I forgot to mention, the lack of concentration, brain fog, difficulty keeping your balance, intolerances to lots of foods, Irritable Bowel Syndrom, and this is no exageration. Going to sleep is horrible because I know that I will not rest and feel refreshed in the morning, I dread the lack of energy and the heavy legs that I feel every day, it is like carrying weights round your ankles. Most of my nights are interruped by sudden surges of pain and nightmares….and waking up in the morning is even worse cause the way I try and explain to everybody is that I feel as if I have been run over ten times over by a truck. And this is putting it mildly. The first hour of the day is the worst for me but I try and be positive and get on with my day trying not to miss work and trying to keep enjoying the things I did before I was diagnosed. On good days, I lead a ‘normal’ life, but I feel that I have been deprived and I do get sad and angry YES. I yearn to start travelling long haul again but spending more than 3 hours sitting on an aircraft seat is pure misery. So, I turn to my art (www.mosaicsbypaulene.com) and my beloved cats (www.maltamainecoons.com ) and I treat myself to many messages and physiotherapy and gentle aquaerobics and get on with it. The hardest thing is explaining to people why social events are no longer yearned and why the party girl now seems to only want to stay in. I have put on loads of weight ( did I forget to mention that this is another lovely side effect on some FM sufferers ? )…..I presume people think I have become lazy and fat. But, far from it, I train everyday, ofcourse I cannot always do a full circuit but I do some sort of training every day be it stationary bike, or walking, swimming, pilates etc, It is painful but I do it, yet the weight won’t budge. It does not help that I am also menopausal. What can I say? Please please please, do not be judgemental when you meet people with M.E. and FM, believe me unless you are going through it yourself you can never ever imagine how painful and depressive this life changing condition is. To those who suffer like myself, please surround yourself with people / things that make you happy……..find a pleasant distraction to fill up the ‘painful’ days since it is very easy to succumb to the pain and stay in bed all day! I know! AND BE POSITIVE. Paulene

Josanne | August 14, 2012 at 9:07 am | Reply
Hi Pauline, how nice to hear from you after all these years, although I’m sorry it had to be in these circumstances. I am so sorry you are going through this but your message I’m sure has helped a lot of people who are suffering as well. Take care and stay positive