Thursday, May 15, 2014

But you don't look sick....

    This week is a big week in awareness campaigns.   May 12th was Chronic Fatigue Syndrome awareness day.  I intended to blog on the day, but I've not been having the best week health-wise, so here it is today….. Better late than never!

    Before I was diagnosed with Lyme disease, I was 'diagnosed' with 'Post-Viral Fatigue  Syndrome' which after 6 months, becomes 'Chronic Fatigue Syndrome' (also known as CFS/ ME - myalgic encephalomyelitis).  In the US it is known as CFIDS (chronic fatigue immune deficiency syndrome).  If I've learned anything on my rollercoaster health 'adventure' it is this: when doctors and researchers can't agree on a name for something, you really don't want to have it.  Nobody really likes any of the names (for simplicity, I'm going to use 'CFS' in this post - but I will agree - I don't like any of the names either).  The US one at least lends a degree of gravity to the condition, something not really communicated with 'Chronic Fatigue Syndrome' - unfortunately that focuses entirely on the word 'fatigue' and leads to people saying things like, "everyone gets tired" (adding 'syndrome' is really important - it differentiates between a recognised medical condition: chronic fatigue syndrome, and a very general symptom, common across many illnesses: chronic fatigue).  

    Eventually, hearing "I'm so tired" (and then watching the person go to work/ the gym/ the pub…..) makes you want to punch anyone who says they are tired, because, really, tired is not the right word (and we do know this is not really anyone's fault!).  Yes, everyone does get tired.  But 'normal' people can go to bed, sleep, and wake up the next morning feeling refreshed.  If they have a busy week, a few late nights - they can still do that at the weekend - they can always catch up on their sleep.

    Anyone with medical fatigue simply can't do that.  So the word fatigue, equated with tired, just doesn't cut it. There should be another word for it - personally I quite like:  'a-vampire-sucked-all-the-energy-out-of-my-body-instead-of-my-blood-and-now-I-am-one-of-the-walking-dead'  (if the Germans can come up with one word for that, it would be great, everyone else could adopt it - they're great at lumping lots of words together and creating new giant words in a way no other language can.)

    One of the main problems with CFS'is that you can't obviously see the symptoms (more details below). It falls in the realm of the 'invisible illness' .  You can't see that the person looks sick - not unless you look really closely.  Always look into someone's eyes - it's amazing what you can see.   

    Everyone knows you can wake up from a bad night's sleep/ horrid hangover, look at your big baggy eyes in the mirror and slap on some concealer and a mask of make-up (ok, guys, you know this, perhaps you just don't do it….).  That works in CFS too.  The mornings I used to wake up feeling my absolute worst were the ones the full mask of make-up was slapped on (that still applies - Lyme/ CFS = same symptoms; hence the frequency of misdiagnosis).  Inevitably, then come the "you're looking better today" comments. Unfortunately this kind of makes you want to punch people too…. It's not really logical, and most people have genuinely nice intentions and are trying to be kind; but knowing what you looked like when YOU looked in the mirror, combined with a pervasive lack of understanding of 'invisible illnesses',  can make the simplest comment feel like an accusation - even when you logically know the person didn't mean it (although sometimes there are people who DO mean it…. They deserve to be punched.  Luckily for them, we simply don't have the energy!).

    While thinking about all of that, I looked back over some old photographs.  I hated getting my photo taken when I was severely ill.  It wasn't a vanity thing (everything wasn't splashed all over facebook then anyway, it wasn't like many people were going to see it; but even if it had been, that wasn't the point….), I simply didn't want to look like that.  I didn't look like ME anymore.  The few photos that do exist were taken on those days with some bronzer and mascara and made me look a lot better than I did when I looked in the mirror naked-faced.  Knowing that actually makes this even worse:

    Top Row: 2005 ~ Bottom Row: 2004

    Top row: photos taken in 2005, the year I got ill

     1. Dinner at my Uncle's. I vividly remember that night - when we got home, my Dad half-carried me upstairs & I went to bed with my clothes on: I didn't even have the energy to put on PJs
    2 & 3. July 2005 - 6/7 months after I'd been ill; in both of these I am make-up-ed & dressed up for dinner - note the fancy earrings in attempt to look 'normal'

    Quite honestly, putting these photos side-by-side for comparison is something I've not done before and even although I know I hate photos of myself from that time, looking at them this way really reminds me why….. I don't really have the words to describe all the feelings and emotions this brings back.

    Bottom row: photos taken in 2004, the previous year

    1. Trampoline club xmas night out in Dec 2004 - ONE month before I got ill
    2. My graduation, July 2004
    3. My birthday, March 2004

    The solution, of course, is not to wear any make-up and just look like crap - maybe then people will see.  But there's a lot of weight to that.  Why do we wear make-up anyway?  

    The recent 'selfie' campaign for cancer awareness (which, as successful as it was, was NOT an awareness campaign - it was a fundraising campaign:  everyone is aware of cancer; this doesn't mean it was a bad thing - it was a great fundraising campaign, very successful; but it wasn't awareness) proved that our outward appearance is deeply connected with how we want to project ourselves.  We can control the way others see us.  But posting a picture of yourself without make-up isn't a brave thing - it's nothing like dealing with the insecurities and psychological issues that serious illnesses cause - they take away control in every way; but the fact it went viral and WAS so successful DOES show how much we want to be in control of how others see us.

     For me, I hated looking in the mirror and feeling like a stranger was staring back at me.  On the days I had the energy to go out, I had make up on - usually applied while propped up in bed, and slapped on in about 5 minutes - simply a mask: concealer hiding the dark circles round my eyes and the horrible acne that appeared; mascara making my eyes look open; and some bronzer/ blusher so I didn't actually look like the walking dead (the comparisons above show exactly how well that all worked...)  The cancer-selfie campaign didn't show people looking like that - not like any seriously ill patient - it just showed women with no make-up on.  But it raised a great amount of money - by tapping into the female psyche in a big way.  Unfortunately I think it missed the opportunity to really explain why it was a big deal, or could be a big deal - why it is a big deal for people suffering from serious illnesses.

    Am I equating CFS with cancer?  Yup.  That's how serious it can be.  I know that's a controversial thing to say, but it is not a new thing, and it is not a revolutionary idea.  I say it in the hope that it will genuinely make people aware of how difficult it can be to deal with CFS.  The very fact it is an 'invisible illness' makes it even more complex.  The Canadian guidelines (highly regarded for CFS 'diagnosis') for diagnosing CFS equate the level of suffering with that of a cancer patient undergoing chemotherapy, or an HIV patient (see page 3 of the linked document).  The level of pain, disability and general quality of life is comparable.  I also know this because I have people close to me who have experienced cancer, and when we discuss our illnesses, we absolutely 'get' each other, while always acknowledging our experiences have been different, we all have learned similar lessons and developed similar views on life - all shaped by our experiences.  Terminal cancer is an entirely different issue, although I have read somewhere that those in 'the 25% group' - ME/CFS patients whose quality of life is rated at 25%, or lower, of 'normal' - can be compared to those suffering terminal cancer.  All of these people are usually housebound or bedbound, confined to a wheelchair if they are even able to leave the house; and are completely unable to look after themselves.
    This specifically is about depression - the point is the same:
    invisible illnesses can impact lives - can destroy lives - as much as very visible serious illnesses.

    Personally, I'm going out on a limb here and saying this because someone very close to me said it to me.  And afterwards she said "I can say that, because I've had cancer."

    She gave me permission to post her 'selfie' on my blog - and for me it was ONE of the most inspirational selfies I saw as part of that campaign (I saw a few which genuinely moved me. If you are reading this, you know who you are <3 ).  This is a genuinely brave photo,  shared from an incredibly difficult time in her life (the photo is about 5 years old now - I am very happy to have her here for her incredible compassion, understanding, and advice; but even moreso just to have her here - and most importantly, for some other special people in my life to have her in theirs).

    My inspirational cousin


    The best analogy, and the best known analogy, is featured on the website and is written by Christine Miserandino.  It's called The Spoon Theory and you can read it here: The Spoon Theory  It's a great analogy for all kinds of chronic illness where energy levels are severely affected, and can be extremely helpful in helping friends and family and even co-workers understand a little bit better.

    And an awesome visual of The Spoon Theory - found on Pinterest:

    One of the most difficult things about a CFS diagnosis is that it is non-specific.  It is an umbrella term for a group of symptoms - many CFS sufferers are eventually diagnosed with something else - that comes as a great relief.  It is becoming more common to eventually get a diagnosis of Lyme disease, or similar 'hidden' infections - ones caused by micoorganisms that do not show up on basic blood tests and have the ability to 'hide' from the immune system. Those who eventually find an answer are the lucky ones - treatment is then possible.

    There are many symptoms documented as being experienced by CFS sufferers.  These can include:

  1. 'Fatigue' symptoms
    • Extreme fatigue: "pathophysiological exhaustion" (from the Canadian Criteria)
    • Unrefreshing sleep
    • Very low energy levels
    • Severe malaise (slow recovery from anything 'energetic')

  2. General physical symptoms
    • severe headaches & migraines
    • Nausea & sickness/ vomiting
    • Muscle pain, bone and joint pain;  'heavy' legs
    • Swollen lymph nodes & swollen glands
    • sore throat, constant flu-like feeling

  3. Neurological symptoms
    • 'Brain fog' (difficulty thinking)
    • Problems with word retrieval
    • Symptoms of dyslexia
    • Forgetting  what you are talking about right in the middle of a sentence/ conversation
    • Problems with mental arithmetic (which were not present before)
    • Problems concentrating or focusing on mental tasks
    • Psychiatric symptoms, e.g. depression, anxiety, OCD

  4. Severe symptoms
    • Cardio: racing heart; increased heart beat; palpitations
    • Interminable pain, e.g. skin hypersensitivity so bad that even a bed sheet brushing across skin can be painful
    • Inability to eat, requiring a feeding tube
    • Death: CFS has been documented as cause of death

    How does it feel?

    Imagine waking up with the worst hangover you can think of, full-blown 'flu, and then having to running a marathon.  Living with CFS is like that every day.  The aches and pains that (genuine) 'flu causes are constant; the 'hangover' feeling - the hit-on-the-head-with-a baseball-bat-can't-think-can't concentrate-don't-like-light-or-noise-want-to-pull-the-covers-over-your-head-rest-your-head-on-the-softest-pillow-that-exists-and-curl-up-in-the-foetal-position-in-pure-silence-all-day - that's about how it feels……..

    But then you have to get up and run the metaphorical marathon.  That is simply daily living.  Everyone who suffers from CFS runs a different marathon every day.  Some people slip more gradually into full-blown CFS following another illness, or a severely stressful life event (which can also affect the immune system), or a traumatic event - such as a car crash, also documented as having caused the onset of CFS.  Others do as I did, the illness doesn't come on gradually, it hits them like a bullet train.  All sense of normality is blasted away and simply trying to survive each day becomes the 'marathon'.

    When I got ill in 2005, I was halfway through my MSc, planned to continue to the PhD programme (I had a scholarship for both) and I literally bounced everywhere.  Then I was hit by that metaphorical bullet train.  I went from being a healthy, active, fit, energetic, bouncy person to feeling like the walking dead. 

    All the energy I had was spent on finishing my MSc - I had none left for anything else.  Friendships slipped away, my social life disappeared - and, of course, gym memberships were cancelled.  CFS (in my case, caused by Lyme disease) snatched away my life as I knew it in an instant.  

    For my full story click on "My Lyme Story" at the top of the page. 

    Getting my Lyme diagnosis was actually wonderful. (Getting it 4 years earlier would have been better.... But at least I had something - I had hope.)  Having a 'real' disease - something I could say, "I have Lyme disease" and explain it if asked…. "It's a bacterial infection caused by the bacterium Borrelia Burgdorferi…." was so different to saying I had CFS.   Nobody really knows about it, it's hard to explain and it's hard to understand - I certainly couldn't have understood it before I felt it.  I like to think I would have been empathetic, but I know now I wouldn't really have 'got' it. 

    Unfortunately I have a friend experiencing this just now and she has said virtually the same to me.  My friend has always been a great friend to me, and I HATE seeing her go through this, because I hate that when we have conversations now, she is not just being empathetic (as she always was), she really 'gets it' and I really wish she didn't.

    Many people who get a CFS 'diagnosis' spend years simply trying to survive before they are diagnosed with something treatable.   Recent research has shown that bacteria - of different types - can lie dormant in the body for significant periods of time; and that they can 'talk' to each other: send out a signal that lets their attack-buddies know they have a big enough army to take on a weakened immune system (ok, that's clearly a simplification, but it's essentially how it works). 

    Research has shown people with CFS who test positive for multiple infections are 'more ill' than people who have only one or two infections  - that's pretty logical, AND microbiologists have scientifically proven it, so evidence-based medicine should be happy…..  Except current treatment for CFS is stuck in the 20th Century.  Cognitive Behaviour Therapy (CBT) is the 'gold standard' (excuse me while I break something) in CFS treatment in the UK.  I read some of my friend's 'booklet' she was given……. Actually, let's start with that - it's over 100 pages long.  Right off, whoever wrote that has NO IDEA about CFS.  I didn't read a book for nearly two years because I simply couldn't concentrate and my head was too sore. (And to put THAT into perspective, in 2004 when I finished my undergrad degree, I read TEN books the week after I finished - I was SO excited to have the time to read fiction again.)  But in the grasp of full-blown CFS, would I HELL have managed to read 100 pages of anything.

    I tried to read my friend's booklet…. I read the first few chapters….  I really really wanted to read more, but the more I read, the more I really really really really really wanted to HURT the person who wrote it.  From memory, as I don't have it to hand, it contained little gems like:

    "If you think tired, you will be tired"

    Yes.  Seriously.  Now….. That doesn't even apply to a healthy person.  Or to anything else.  Great, let's all "think thin" or "think f***ing winning lottery numbers" - anyone tried it?  Think it works?!  I can't really go on - it was ALL like that.  NOT helpful, and it certainly didn't 'get it'.  

    The Canadian document states:

    "A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based
    on the premise that the patient’s impairments are learned due to wrong thinking and
    “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the
    interaction of cognition, behaviour, and emotional processes. The patient merely has to change
    their thinking and their symptoms will be gone…

     "Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients’ symptoms, blame them for their illness, and withhold medical treatment…..

    "...their studies fail to cure or improve physiological impairments such as OI, sore throat,
    IBS, etc. Dr. A. Komaroff, a Harvard based world authority, stated that the evidence of
    biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms
    that are only imagined or amplified because of underlying psychiatric distress. It is time to put
    that hypothesis to rest”...

    "...Some physicians, who are cognizant of the biological pathophysiology
    of ME/CFS, teach patients coping skills… We urge such doctors to use the
    term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and
    “Cognitive Retraining Therapy”."

    (See pp 10-11)

    The Canadian document was published in the Journal of Chronic Fatigue Syndrome in 2003. yet clearly treatment in this country needs to be better.  Advancing general understanding and also changing medical approaches for CFS is urgently needed….. come on, - PLEASE!! - join us in the twenty-first century; read new research - try actually healing people….. Not expecting people to 'accept their limitations' - and certainly not trying to cure a physical illness, often linked with infections, by psychological treatments*. 

    CFS is a very real, very physical condition and awareness, understanding and compassion is SO very important to someone suffering from CFS.

     There are many people - including many researchers - who believe 'CFS' is an umbrella term for a group of symptoms, not a diagnosis.  There are also many people - telling their stories online, on forums, personal blogs, and even through some media outlets  -  who HAVE persisted, believing they would find a reason for their illness, or a doctor who could help them - and succeeded.  Most of these people speak out because they want to help others achieve the same - the internet has provided these people (myself included) with a voice to add to this movement; this effort to increase awareness - awareness of the effects of CFS and also awareness of potential causes and possible solutions.  Having experienced the horror of CFS, we want to help other people avoid it, and by spreading awareness and helping further understanding, hopefully - soon - that effort will be worth it.

    *disclaimer - I do believe CBT and similar approaches can be a very helpful addition to treatment when appropriate - coping with an illness, or trauma of any kind can be difficult and there are psychological techniques that are extremely helpful; in fact in most cases I'd go as far as to say the UK is years behind the US in this regard, except, apparently, when it's not really helpful.

    “Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.”

      ~ Emily Dickinson

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