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
L-R:
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
L-R
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.
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 www.butyoudontlooksick.com 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:
- 'Fatigue'
symptoms
- Extreme fatigue: "pathophysiological exhaustion" (from the Canadian Criteria)
- Unrefreshing sleep
- Very low energy levels
- Severe malaise (slow
recovery from anything 'energetic')
- 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
- 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
- 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'.
"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
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
