This blog entry will be an aberration from my other entries. I normally avoid covering the emotional toil that plagues chronic illnesses however this entry is devoted to such specifics. These are some of my most common musings- from a mind ravaged by ME/CFS
I often ponder the questions in the existential domain of ‘why here and now?’ Why did I end up with ME/CFS and why did it flourish at this stage in my life? Rather than this question being a catalyst for depressing and macabre answers and rather than this being a rhetorical jibe, I instead hypothesise that ME/CFS may have been my saving grace. If I was not inflicted with this debilitating disease, I may have died in some unfortunate incident such as a real crash (not the ME/CFS type!) By having this illness, I may have averted what could have perhaps been an even grimmer situation.
The unique timeframe that I and other ME/CFS sufferers contracted this disease is particularly quizzical. Out of the eons of human civilisation, to bequeath a disease that can be sufficiently diagnosed however not have any opaque etiology or necessarily effective treatments is statistically freakish. Only a small window within the expanse of time involves human’s being able to diagnose however not treat or fundamentally understand an illness.
I often use a purposeful fallacy to avoid staring enviously at others. This dubious argument I created states that ‘One only experiences the act of craving something when a comparison is made to “the other” who has entity x.’ For instance if everyone in the world could fly besides me then I would envy such flying prowess that is otherwise ubiquitous worldwide. It becomes evident that such envy stems from what everyone else has as opposed to what I have and it is therefore only imposed by the manner in which I view the world. I therefore can pretend that beneath the thin veneer of the population’s healthy exterior lies much permanent pain and anguish. I am therefore not envious of health because it does not exist (although in the real world, I would still dearly love my health back!)
My illness began when I was 17 years old and I am writing this article at the age of 23. I am in the unique situation of not knowing what I am like as a person. The developments that occur between 17 and 23 can be dramatic and living such a restricted life has caused me to be unsure of my real personality (when I am void of illness), my interests and who I fundamentally am as a human being. I don’t consider myself to be aged 23 but rather I tell myself that I am still 17 and my life has merely been placed on pause. When one doesn’t experience exterior trials, thrills, tribulations and ageing peers- does one really metaphorically grow older?
The twisted irony of this illness involves the very instrument needed to research this disease being affected- the brain. This circular quandary is one of the most frustrating elements of this disease and leaves one often feeling helpless. One could cope with a predominantly physically crippling disease or even a solely neurological disease. One could rely on the unaffected bodily function- i.e. mind or body. ME/CFS patients are not so lucky. I would love to passionately pursue some athletic or intellectual endeavour however the nature of this illness prohibits precisely both of these avenues.
The demeaning illness name that literally applies to 7 billion people worldwide in ‘fatigue’ is perhaps the most malicious misnomer in the English language. Such a large portion of the trivialisation of this illness (and perhaps lack of medical inroads into this illness) is a consequence of the literally interpreted nomenclature: ‘chronic fatigue syndrome.’ The condescending and antiquated jibes stemming from the psych lobby are another gloomy face of this illness. Much like the ‘God of the gaps’ theory, I call the psych lobby’s assertions ‘the gaps of the illnesses.’ When one ‘psychosomatic’ illness is proven beyond doubt to be purely biological- there domain narrows… I wait for the day that ME/CFS is removed from their realm.
The politics that is compulsively intermingled with this illness has forced every patient into the advocacy minefield. We must burn both ends of the candle- treatment research and political advocacy to stumble across a solution in the form of a cure. Which end of the candle will vanquish first remains the pertinent question.
Having nebulously defined limits which if one misestimates or fails to preconceive of results in the wicked cruelty of suffering. The punishment in crashing does not fit the crime of misestimating a variable. This process is almost poetically symbolic yet devilishly evil. It is as if ME/CFS patients are being tempted onto an ice arena yet it takes one false step and beneath the mysterious surface, lurking in some unknown plain, the cracks instantaneously emerge and one is devoured by the world.
Although it can be interpreted as a sadistic tendency, I cherish watching gruelling sporting events such as Le Tour De France. Such vision portrays fellow mortals suffering while scouring mountains that reach into the heavens. Pain is painted on their face and is a timely reminder for me that in the real world, that I am not a part of, suffering is abundant. Having the knowledge that I am not the only individual on this earth to experience constant physiological pain is refreshing. If others can tolerate it- I can too. This aforementioned sporting event is merely a manifestation of self-inflicted pain yet I am reminded that some chronically ill people out there are worse-off than me. I am lucky compared to these sufferers.
I always considered the moral theory of utilitarianism to define happiness (or pleasure) and pain as antonyms. I am now a contradiction of these former thoughts of mine. I am an extremely happy person every hour of the day yet conversely I am also in pain 24/7. ME/CFS has forced me to reconsider a plethora of my former thoughts and it has changed me in more manners than I considered possible.
There is very little for me to occupy my time with however curiously I never fall down the abyss of boredom. Jean-Paul Sartre once said “If you are lonely when you’re alone, you are in bad company.” I am quite fond of my own company and have always been a relatively solemn person. I tend to break each day into segments rather than tackling the day as a holistic entity. This technique has contributed to my days passing swiftly.
Most painters live to paint however I paint to live. When I am not well enough to partake in the few activities that I am restricted to (e.g. TV) I can paint. This is not something that I particularly enjoy yet this is thrust onto me. I paint for the process not the end product. I find the repetitive brush strokes onto canvass soothing. Painting is essentially a management strategy intertwined within this illness for me.
Like every ME/CFS patient, I have been on the receiving end of pejorative comments from family, friends and doctors pertaining to my illness. To avoid negatively dwelling upon such comments for my own sake, I employ ‘Hanlon’s Razor’ to such remarks. This concept is defined as: “Never attribute to malice that which is adequately explained by stupidity.” I paraphrase this statement to read “Never attribute to malice that which is adequately explained by ignorance.” When a prejudice comment is made to me relating to my illness, I mentally explain the antagonist’s behaviour through their ignorance of ME/CFS as opposed to them being malicious.
Accompanying any chronic illness are the inevitable gloomy thoughts that pepper the mind like Maradona homing in on goal. I deflect such thoughts by firstly identifying them as pragmatically useless entities as early as possible. I then change my thought process to focus on an ulterior topic. This process has conditioned my mind, as if it were one of Pavlov’s dogs as I now seldom let negative thoughts infect my soul.
It is not a matter of will I get better from this illness, I only consider the question of ‘when will I reach remission?’
I think you have clearly found who you are, what your personality is, and how you are becoming.
For a 23 year old to be so decisive, incisive and well-read, has taken a strength and passion beyond what I can even contemplate.
You are a light unto the world of patients like you; a Voice that gives us reflection upon reflection and then gazes itself back at us.
I, like you, am in pain 24/7, yet I am happy. I, too, make it through my days without a moment’s boredom. That’s because I am passionately involved in something I believe in: Advocacy, Patient Comfort and Support and Activism.
You give us all those and more.
Do not worry about those formative years…you have come through and surpassed them.
Thanks for sharing this. You say, “I don’t consider myself to be aged 23 but rather I tell myself that I am still 17 and my life has merely been placed on pause.”, but your whole blog speaks of levels of maturity.
I feel it’s aged me in 2 ways – one, it took me from being an extremely healthy, mentally, physically and socially engaged person and more or less quadrupled my age – making me similar to a 95 year old in many ways.
And then, in having to deal with the devastation and deep changes in almost all aspects of inner and outer life this illness brings, I had to grow and mature in order to cope with it all. Funny, my parents and their friends sometimes come to me for empathy and/or advice now on issues they are facing as they age.
The way in which you manage how you live with the disease, & the awareness level and the strategies you have developed indicate growth & maturity to me. Not the same path you would have taken had you not gotten sick. But I don’t see a 17 year old on pause.
Yikes – it’s taken me forever to write this. I will stop now.
Great job.
What an extraordinary post. I understand completely why you wonder if not having the experiences other people have everyday has somehow held you back. But you have clearly found your soul, and it is flourishing. Oscar Wilde said “We are all in the gutter, but some of us are looking at the stars.” Well, that is you. Despite the restrictions in your life, you obviously see much more than most.
Ahh yes..the imponderables of who we are / might have been if it were not for this illness.
I succumbed to symptoms age 10 (almost 41 yrs ago now). Maybe I was lucky that the earlier years were waxing and waning and I could see who I might be if I were lucky enough to throw off the mantle of this dratted incumberance.
I had three tranches of two year stretches where I was maybe, and wonderfully, 80% well,when I could see the ‘real me’. The ‘real me’ is me with bells on..or more accurately without the bells as I know I’m more strident and aggressive and demanding being the ‘ME me’ as I fight to hold on to the little autonomy I still pretend I possess.
But I understand the idea of not aging through our years in the normal way of things: I too feel more 15 or 22 than 50..but I quite like that: my viewpoint on life is much younger and fresher (ironically) than some of my contemporaries,I think (or am I just kidding myself ?), as I feel most at home with the person I was then.
But like you I’m a happy little soul. I like my own company even if my natural inclinations are very gregarious and am usally absorbed enough not to mind it..though my inquisitiveness in everyday life and the world around me lets me down most badly when ‘tired but wired’ & I find I’m bored almost witless by my inability to engage in the way I want to with the things that interest me. Maybe it isn’t boredom per se..maybe it’s frustration….so much to do ..so much time ..and so little energy..life ain’t fair..and I rail against that. I have no intention of giving up..I will be better one day and then look out!
Great post, thank you!
Perfect demonstration, if you ask me, of the one advantage of having ME/CFS since a young age: a superior ability to cope with the disease in a ‘beneficial’ way.
I’ve had ME/CFS since more than 30 years (since age 17), and, yes!, I went through (at least partial) remissions (some of which lasted for some years). Never, even in the worst periods, have I felt bored, or lonely, or did I feel envy towards ‘healthy’ people,…. Looking back now, age 17 was the ‘turning point’ for me. At that moment I had to become another person. I will never know what the ‘healthy me’ would have become. I am the ‘new me’, and I consider myself a treasure-hunter. And I guess, judging from the maturity you’ve reached at age 23, you will dig up many treasures in life too…
I’ve often likened psychologization with belief in a god of the gaps. People say “psychosomatic” and everybody nods their heads as if that explained everything.
Have you had any success in educating the ignorant?
I marked my 20th anniversary with CFS this year. I was diagnosed at age 7. Had I not gotten sick I know exactly where I would be and what I would be doing, but not who I would be. Having a disease like CFS reshapes and remoulds a person day by day and decision by decision. I mourn for what might have been or what I might have had, but never for who I have become. I am priviledged to know a great deal about my ancestors and some of them did amazing and brilliant things. I hope when I die that I can look them in the eye and present my life as an accomplishment worthy of their example. So for now, I help who and where and when I can. My challenge remains that when my life contracts further than it has before due to CFS that I not let my soul become contracted with it, but rather that I push forward and grow.
Hi there,
Thank you for this great post and this wonderful blog. I saw that you’re a 23-yr old patient and was wondering if you’ve heard of our new group for young-adult patients with ME/CFS?
If not please check out our facebook page at http://www.facebook.com/pages/Young-Adult-Patients-with-ME-CFS-Chronic-Lyme-Fibromyalgia-etc/183809648306533
All my best,
joey
The gigantic basket of symptoms hit me back in 2000 and have been slogging through the mud ever since – both with CFS and FIBRO. Trying to distinguish from the two is virtually pointless. As of late (for past two years) i’ve been on Ultram, Lyrica, and a controlled relase, SSRI. These drugs have changed my life. Without them, it’s a sick day for me, and i cannot work, play with my son, or help my wife out with household chores. I had tried all the vitamin supplements and “natural” hogwash that’s out there and nothing worked but pharma. I hate, hate, hate that i have to take these meds, but cannot live without them (especially the first two). The real tragedy is that i am a man and the entire world frowns on my condition (except my physician). Anybody that says this is a woman’s disease is wrong. This has been the most depressing thing I’ve ever had to deal with in my life… thanks for letting me blog here.
Hi cfssufferer, you might be interested in writing a letter to the editors of The Lancet on the recently released £5m PACE GET/CBT study.
Free to read if you register: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960096-2/fulltext
Information on the study is here:
http://www.biomedcentral.com/1471-2377/7/6
http://www.pacetrial.org/trialinfo.html
Note that the secondary measures which includes the only objective measure (number of hours worked) were not published at all. This is a bit suspicious.
As per http://www.lancet.com/lancet-information-for-authors/article-types-manuscript-requirements (see the correspondence section), the letter must be <250 words and 5 references or less.
This is a brilliant and inspirational piece.
I am reminded much of Jacques Derrida’s book (in English) “The Other is every Bit the Other”.
It seems to be only this recognition of “the other” and that “the other” is absolutely “the other”, that allows us to give complete respect to the other’s world – a respect that rests in complete non-judgement.
You’re only 23?! Wow, you’re knowledgable! I assumed you were much older!
You are wise beyond your years, I think we all are. Being immobilised makes you a watcher of life, and I think it makes us all deeper thinkers as a result.
In all the 18 years I’ve had ME (since I was 19), I have never envied healthier people. In fact, I pity them. Because they have never suffered debilitation, they have much less thought or consideration for others. They can’t empathise.
Several of my acquaintances still consider me lazy, but when we actually talk about it, i find that mentioning nystagmus normally throws most people who think that “yuppie flu” is psychosomatic. Why would I invent visually imperceptible eye muscle spasms that affect my balance and depth perception?!
Keep up the good work. I’m so glad I found your blog. It’s reassuring to know that someone “gets it”!
As an aside, if anyone wants cheering up, I take cruises and have a blog eleswhere on wordpress. Cruises are brilliant for ME sufferers, I recommend them highly. You can do as little or as much as you feel able, no stairs or hills, and you only have to unpack once, whilst still waking up in a different country each day. Feel free to travel with me via http://www.cruisetheoceanswithemma.com.
Be well.
This is genius. Prose of the highest order. You sing my heart and for that I thank you.
I currently gain much satisfaction from the decidedly New Age view that we are souls evolving ever onward and upward. So if we are here to learn lessons what better teacher than CFS? Simple, yet pleasing none the less.
The illness has been my fiercest foe and wisest master. A paradox. But that’s where all the fun seems to happen 🙂
Joe
Hello.
How are you? I loved this piece as well. Thank you. I have to tell you that very recently I wrote a piece for my book on these very similiar subjects. I talk about the phases and stages of illness, of ages of onset and how they differ, and of how I feel my life paused at 30 (I am now 51).
In my mind, when I wake up out of this, I will still be 30 and carry on where I left off. (I look very young for my age as do many of my friends with ME) However, everyone around me has aged over 20 years. What the heck?Almost like the inside of the body is so busy, it is forgetting to age the outside.
Many of us have grown so much so fast in the invisible world, that it is equal to that of a lifetime; but the normal everyday physical world achievements and development is slowed dramatically, even stopped. How strange, right?
But the point is that it is growth – maybe the most important growth of all – the spirit.
So many similiar observations we have, and for you to have them at your age is beautiful. If you were to read my piece, one of us would think the other plaguerised I think. This may be one of the pieces to include in my book on behalf of your age group, as my version is older. They would complement each other.
Promise, when my book ever comes out, please know that I did not copy the ideas in this article (he,he), but it does demonstrate the similar processess and awarenesses this particular illness raises for the people living with it.
Thanks again.