Wednesday, December 31, 2014

My 2014: playing catch up

Well, it's been a while since I blogged - there seems to be so much to say, so much going on, and every time I think I'll write an update, something else uproots that and I don't know where to start and where to stop... So with a little bit of inspiration from Facebook, but with a lot more commentary (everyone knows I talk too much anyway!), I thought perhaps this can catch me up with an overview of this year and let me continue on from there.....

MY 2014


Spent in Pennsylvania with my family, to 'touch base' with my US physios and doctors and to spend some time in the snow, including learning how to survive a polar vortex (layer, layer, layer!) And enjoy my Mum's Burns' supper she hosts for our American friends - always a fun night!



Luckily I missed the ice storm that came the week after I left - it looks pretty............ but no power in a polar vortex with arctic temperatures is no fun!

Unfortunately that awesome combo of a damp Scottish winter + jet-lag + a bad cold seemed to dominate most of February and I didn't do very much at all.  Other strange symptoms seemed to appear and I was worried I was having a Lyme relapse.  On top of that, my shoulder pain seemed to be at a constant high level, at times spiking above that, rendering me virtually immobile.  It was not good - it would wake me up, spasming in the middle of the night, wondering how on earth I could deal with it.  But I did.  I survived - this year feels like it has been about survival!

Damn right!


It turned out that I actually didn't have that jet-lag + bad cold combo, but that I had mould poisoning.  The room I was renting - and had spent almost 24/7 in for a month - had mould growing on the walls, and on my furniture. 

How could I miss this?  I saw the wall when I moved my chair to reach something that had fallen - the chair had been angled across the coldest corner of the room with a long throw over it.  However the mould had spread across the entire wall and even onto a dress IN the built-in-wardrobes.  As if I needed more stress and health issues to deal with.  After three doctors and a microbiologist friend looked at my photographs (and my blue mouth and yellow throat) and told me to "get out"; March was spent searching for my own place to rent, and staying with some wonderful friends who saved me!

For some very, very special people 

The first question was: should I go back to my parents?  My health had deteriorated, admittedly (now I'll say it) I was struggling; I wasn't getting adequate treatment for my shoulder (although I was on a couple of waiting lists at that point), and I was going to have to move anyway….  I (perhaps stubbornly) didn't want to 'run away' from the first problem I encountered, so I found a place quite quickly through a chance encounter with an old friend and decided to give it a go.

Around this time (the exact day I got the lease), I received letter telling me Scotland's 'expert' in brachial plexus issues was refusing to see me:

I had hoped to go home and spread awareness about my injury - most common among police dog handlers and in road traffic accidents.  Unfortunately I did not encounter any intellectual curiosity, only 'experts' who were not interested in new things (this is just one example).

Yes, it made me angry (and a little crazy at the time - refused help without even being seen! A new surgery just dismissed when it might help others); it made me really disappointed in the system we are supposed to be proud of; the NHS that I defend to American friends when they talk about 'socialized medicine'; despite the fact I feel it has let me down repeatedly - and really disappointed for other people who may have the same injury I had.

Getting it fixed; having my surgery - it was purely by chance, just because of where my parents are living just now and just because we happen to have a good friend who is a highly esteemed doctor, with many contacts and a hugely compassionate personality.
I was lucky, that was all.

One total breakdown; one potential treatment avenue no longer available, and one 6-month lease signed.....


April I spent treating mould toxicity, slowly improving,;and moving into my own wee flat, enjoying some interior decorating on a budget!

*pics of flat to follow - it's late!*


May came with a sense of renewed optimism - finally, an appointment with the Pain Clinic, and some rare Scottish sunshine.

The River Clyde - with blue skies and sunshine!

The pain clinic doctor (an anaesthetist - Dr J) was wonderful - easily the best specialist I have seen at home in relation to my shoulder, a truly caring and compassionate doctor (isn't that supposed to come with the job?!  How sad that it often does not.).  However, Dr J's specialty is pain management - not anything that can 'fix' me; and as he works for an underfunded NHS pain service, my next appointment is April 2015.  Not exactly helpful for me - or, I'm sure, for anyone else trying to address their pain issues.  And I'm sure it's not ideal for Dr J either.  The outcome was to start a new drug (which I'd been avoiding for about 18 months due to its side effect profile - but I needed something to offer some relief, so I decided to try it); and home visits by a lovely occupational therapist. 

She was also  a genuinely caring person, passionate about her job, and I enjoyed her visits and found some of her advice helpful but to be honest, it would be most helpful to someone at the beginning of a major recovery - after 3 years, you really have no choice but to work out how to adapt things yourself.  Of course, when do you know you are going to end up in  rehab with no end point except in major traumatic incidents like car accidents, or failed parachutes…

…We ate at a restaurant this summer and the server noticed my neck brace & sling & pillow and asked me what I had done.  Turns out he had also injured his shoulder a few years earlier………. When his f#%$^&g parachute didn't function properly (not for the entire jump, but from a considerable height) - and there he is serving tables.  Seriously universe?!   Was I a psychotic serial killer in a past life?!


June was dominated by the now-definitely-hated drug pregabalin (Lyrica).  I agreed to "give it time" and to "let the body get used to it".  I got to week 6 before I properly blacked out for about 7 hours - luckily I was next to my bed when I did so, but when I 'woke up' and went through to the kitchen, I had dropped things and broken things.  I cannot remember another day that same week - at all.  I know I didn't go anywhere, 'clues' suggest I pretty much just slept - luckily.  And that was bye-bye Lyrica.  I will note that while I would not have kept taking the drug after it had such terrifying effects, I also did not feel any pain relief from it - deciding that was not an option for me was a no-brainer.

The next thing that happened in June was really the deciding factor in me coming back to the US to stay with my parents for a while - and even more of a necessity, my physios and doctors here.  I saw the 'top' orthopaedic specialist in our area regarding my shoulder (I'll call him Mr X* ).  Initially I actually saw a different consultant, who worked under Mr X.  He glanced through my notes, asked me to do a few movements and very quickly decided Mr X would want to examine me himself.  That's perhaps the weirdest bit of this little story, for me.

He arranged an appointment with Mr X for the following week.  I had been told wonderful things about him and went to the appointment feeling less nervous than I had previously about appointments at home.  I had a new, fantastic, GP; Dr J at the pain clinic had been wonderful, as had the OT.  I went to this appointment on my own - for the first time in a long time.

Perhaps that was my first mistake... who knows?  Mr X was not interested in my history, my surgery or in helping me improve.  He didn't ask me any questions specifically about what happened; why/ where my pain was; how I would rate my pain; why I was still seeking treatment……… It's one of those appointments I look back over and I wonder how it turned out that way. Could I/ should I have tried to take more control?  (I had been advised to just answer the doctor's questions - my dad's physio friend who was treating me told me that there was "just too much information in [my] head……. It's too much, even for a doctor, to take in at once" - so I went with that).   As a result, he glanced over my file, seemed to think he was supposed to assess my surgery, which I tried to tell him was not the issue now - it worked - but he assessed me that way anyway, yanked my arm about my head - painfully……. Also, it doesn't go above my head, so I don't know what that did - and I can't even move it that far myself.  His ultimate conclusion was this:

"Reassured and discharged."
My US Doctor of Physiotherapy (with 20+ pages of publications on his C.V.) read this letter and asked:
 "Did this guy even examine you?"

(I can swim, by the way.  And I told him this.  And no offence to any water aerobics enthusiasts, but I think I would prefer other things to enhance my social life!  At least for another few decades!)

And there I was again, questioning my own sanity; my own instincts, and my own body.  If two 'top' doctors were just going to dismiss me, was I doing the right thing?  How could I possibly try any harder?  I was not coping - physically, not at all; and of course that has an emotional and psychological toll as well.  Ultimately trying to be there, to fight alone was not good for me in every way.

Rothman Institute, Philadelphia:
"Mission: To provide our community with high quality, compassionate... care.... the results of which will exceed expectations

 "Every effort will be made to keep your appointment to the minimum.  Your cooperation is appreciated.

On top of that, the only medical person who had been of any help at home - my wonderful physio, a family friend - was retiring.  And even he honestly admitted he didn't know what to do with me - my physios here are not sure either, but they have a team, they are collaborating with each other, and they are talking to other surgeons, doctors and physios treating other patients with the same issues - that makes a big difference.

Adding those three things together and factoring in my overall health going rapidly downhill, I 'decided' to come back over here for a while.  It was more a choice of survival, but, that's what I chose: listening to my body - survival.

Trust yourself.

*not his real initials


I arrived just before the weekend of the World Cup Final (how dates are remembered in my house - football/soccer) and although my parents knew I wasn't doing well at home, I don't think they were expecting me to arrive in quite as much of a mess as I did.  July was spent mostly sleeping, eating - I was feeling hungry again, after a long time of eating very little, and soaking up the last rays of the sun……when I managed to get out of bed in time.  

Summer flowers bring...........Hummingbirds!
(My mum's photo)

I also made appointments with my specialist physio, M, and with Angelo, my regular physio, and my doctor - both of whom were in agreement that I had gone downhill and that the 'treatment' I received at home was not good.  Project: 'Recover Lost Time' began


Project: 'Recover Lost Time' was AGONY!  Cue nearly passing out at physio again while I let my physios torture me.  My pain felt like it was going off the charts, I wasn't sleeping because of it and while my physios seemed to get some increased movement - I couldn't do it on my own.

In between the torture, we had a wonderful guest :-) and managed a trip to the Jersey Shore, which was just so calming and peaceful being able to lie in bed and listen to the waves crash against the sand.  Insomnia even let me catch some beautiful sunrises!


The most exciting thing in September was Mum turning 60!

Something to celebrate!

Otherwise my life continued to be as exciting as physio & doctor appointments can be.


Project: 'Recover Lost Time: let's push to the limit' produced some……. Results? Answers?  Not exactly sure, but it seemed to provide some evidence that suggests my nerve problems are not my only problems, but that my scapular dyskinesis may be caused by something 'mechanical' as well.  I'm still betting on the frozen scapula - and after several weeks of working continuously with it, my physios do tend to agree, but what to do…….?

Strange swellings and shoulder/ scapula shapes

Yeah, really, what to do?  I'm a medical mystery.


Well, it's not exactly a giant leap, but compared to where I was several months ago, with no clue and no plan, my shoulder seems to at least have a 'pl __' now.  Uncertain though it may be.

Then, almost at the end of the month I did this:


Me + socks + wooden floor.  And yeah, it was funny at first - well, not really for me, but that idiotic optimism persisted somewhere……… "yeah, this is my 'good' arm……."

Gotta keep smiling.....................

So……. Up-to-date
(in fewer than 100 pages - amazing!)

December saw my sister & brother-in-law visit for the first time as a married couple.  Wasn't really any different to any other time they'd been, but I think they had a good time!

I saw the surgeon my physio had recommended.  Dr G.  He has done a couple of Dr Kibler's surgeries now, he's in Philadelphia - for a while it looked like a trip back to Kentucky might have been in the immediate future, so that's good.  He has agreed (and yes, agreed is the right word!) to "clear out the junk" from my shoulder.  This is apparently a technical term.  All the clunking and grinding and popping and crunching noises seem to be getting worse by the day.  This is really blocking movement and creating a lot of tightness in my shoulder capsule, which is not good.  It leads to inflammation, which leads to further compression of my nerves which leads to a numb neck/ face/ear/arm, and more pain in my scapula and down into my back and side.  The tightness is also causing some pretty horrific spasming which is pulling my ribs out of position, so I seem to have sporadically dislocating (well, subluxating really, if I'm not being dramatic) ribs which my physio can audibly click back into place - most of the time………. A couple of weeks ago, he tried 8 times to get one rib back in (at my insistence).  It did not want to go.  So it didn't.  Ouch.

More recently I've been doing this really weird thing………. Sleeping!  Clearly not at the right times, since it is 4am right now, but I have been finding it so difficult to stay awake.  Let's really paint the picture  -  on xmas morning, my mum woke me up by physically removing my earplug! There have been other occasions where she has literally taken a cup of undrunk tea out of my hands and I do not stir.  It's kind of freaky.  Then last week, Angelo was doing some work on my neck as usual and I was pointing out the nice big lumps that form where my muscles spasm and pull and he did a little manipulation and 'POP' - apparently I had three twisted cervical vertebrae.  I think they've gone again because I've been a bit dozy for a couple of days again.

I did manage to wake up and enjoy xmas day; but my favourite gift was given to my by my sister on xmas eve.  NEVER did I think I would say a trashy, tacky, xmas jumper would be my favourite thing, but she managed to find the PERFECT one. It really made me smile! I think I'm just going to wear it all the time anyway!  (Although I have told her if I break my leg this year, it's totally on her!)

And in other December news, my now-not-so-funny sprained wrist had an elbow and wrist MRI yesterday.  I have yet again taught myself that you cannot teach yourself how to read MRIs online, even by watching medical school powerpoint courses, so I'll just need to wait until the doctor calls with my results.

And he'll probably talk to my mum, because when Dr G said he would do my surgery, I wanted the first available date -

December 31st… surgery TODAY…. Watch this space.

Oh, and Happy Hogmanay!

Saturday, July 26, 2014

Empty Red Shoes: Increasing Awareness of Lyme & Invisible Illnesses

In memory of Australian Lyme patient, Theda Myint, the Worldwide Lyme Borreliosis Association (more info can be read via the link) held the second international 'Red Shoe Day' on 25th July 2014 (spanning multiple dates to accommodate global time differences)*.  Their goal is to create an annual day of remembrance for people who have lost their lives to Lyme Disease and other invisible illnesses.  The Facebook page created for the event listed almost 1000 people as 'attending' and invited people from all around the world to post photographs of them wearing red shoes to the page - of which there are now hundreds.

*Edit: 2014 was not the second international red shoe day, but the second time red shoes were worn to commemorate Theda - her friends decided to wear red shoes to celebrate her life on the day they said goodbye to her.  This year is the first year it went global.  

Reading Theda's story - and all stories about those who have lost their battle with Lyme disease - evokes an overwhelming emotional reaction in me.  I don't think there is a single time I have read about a stranger, someone I never knew, who has suffered and died from Lyme Disease, or CFS/ME (Theda's original diagnosis, and also mine) and not cried.  There is never a time when I haven't thought: that could have been me.  Because it could have been. 

And: that should have been prevented.  Because it could have been.

This reaction is why most people with any kind of invisible illness want to increase awareness and foster understanding as much as we want (a) cure(s).  Many people are unaware that Lyme Disease, for example, can be fatal.  Raising awareness means more people can get early treatment, fewer people will die from an infection that CAN (in most cases) be easily treated in its early stages.  And stories like Theda's will disappear.

If it had been me, I would be very proud of my family and friends if they started a worldwide movement to support others.  Her friends chose red shoes (not 'Lyme' green ones) because they were her favourite colour of shoe.  They also feel red shoes can be all-encompassing, representing all invisible illnesses.

I wore my own red shoes on Friday and hopefully next year anyone reading this will wear red shoes too.

(Actually, lacking in red shoes, I got creative this year)

I want to share a beautifully poignant photograph posted to the Red Shoe Day Facebook page.  It perfectly illustrates exactly what Red Shoe Day is about.

I wrote about it here on the GoLymeGreen blog: Empty Red Shoes :

Photograph by Marianne Verheyen

While this is not a painting, it is most definitely a work of art, and I feel this quote is both sad and beautiful, like the photograph.  They seem to go perfectly together, as well as reflecting life lived with chronic illness.

I never paint dreams or nightmares, I paint my own reality

~ Frida Kahlo

Saturday, May 17, 2014

Lyme Awareness Protests


This weekend will see awareness protests around the world with the aim of increasing awareness of Lyme disease and gaining proper treatment for patients and updated information, based on current research for doctors, other health professionals, and patients.

Details, pictures, and media coverage from all the protests can be found on the Worldwide Lyme Protest facebook page.

In the UK, Friday saw a Lyme awareness protest in Manchester; Saturday will see a protest outside the Department of Health in London.

See the Lyme Disease UK facebook page for coverage of both events.

If you're in London and looking for something to do tomorrow - join in the protest; take the place of someone who wishes to be there but is too ill to attend because treatment is not available....

If you can't do that, show your support by supporting the GoLymeGreen campaign - wear green, turn your profiles pictures green and share awareness about Lyme!

Your help could save someone's life.

Be the change you wish to see in the world

~ Gandhi

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