COMING TO TERMS WITH CFS/ME

Trying to trace back to when I first became sick has not been easy.  Chronic Fatigue Syndrome / M.E 

(myalgic encephalomyelitis) / Post Viral Syndrome, whatever you want to call it, is such a gradual debilitation that it's almost impossible to pin-point the exact time you became ill with this chronic, untreatable disease.  

As a kid, I was constantly poorly with viral/bacterial throat infections and on two separate occasions as a teen and then again as an adult, I was told I had Glandular Fever (Epstein Barr, Mono) which is a usual trigger for CFS.

Things noticeably became different during the pregnancy of my second child, 6 years ago.  I didn't feel well, but I wasn't feeling sick either.  I put it down to pregnancy but I knew something was different.

Shortly after my son was born, I was back and forwards to the Doctor with my symptoms.

"I'm not getting better!"

"It's depression"

But it wasn't depression... It couldn't be depression because I was so blissfully in love with my new baby and completed family, there was no room for anything else.  I tried their medications for a year or so and I gradually felt worse.  My husband would come home from work and I'd be curled up on the sofa, unable to describe what was wrong with my body because EVERYTHING felt wrong and yet I couldn't put my finger on it either.

Another trip to the doctor revealed I had Hypothyroidism.  Great!  They can treat my thyroid and I'll be back to my cheerful, busy, outgoing self.  Wrong.  They refused treatment preferring to see if my thyroid would right it's self on it's own.  And it did not.

After more trips going backwards and forwards to the doctors, I discovered a lump in my neck the size of a golf ball.  You can imagine I was horrified, expecting the worse given my indescribable symptoms that had gone on for so long.  The doctors discovered I have super high thyroid anti-bodies, but my TSH had gone back to normal.  I had auto-immune thyroiditis.  And they still refused to treat me.

By now, I was feeling very much depressed.  I had a swollen neck that made my lymph nodes swell so big I felt like I permanently had tonsillitis, my family were struggling to get any life out of me and my friends thought I was blowing them off all the time because I was always so poorly and couldn't make it out of my bed.

I started having headaches that would last 2 or 3 days and turn into full blown migraines and every now and then I'd experience weeks of unrelenting dizziness and nausea.

Along with all my ailments, my teeth began rotting at a super fast pace, I was loosing my hair and my skin was becoming dry.  I'd became deficient in iron and folate but treating that wasn't working.  My body wasn't getting what it was suppose to and I knew it was because of my thyroid.

Each time I begged for my doctors to treat my thyroid they sent me home with prozac and I honest to god thought I was going mad.  My mum and husband couldn't understand why a doctor would dismiss any illness and deemed me a hypochondriac and suddenly the world was a very lonely place to be.

In my early 20's and bedridden, I began to zone out.  There was no hope in being taken seriously and I could see no light at the end of the tunnel.  And for almost a year, I remained in this numbing-zombie-like state of mind.  I have no memory of birthdays or Christmas that year.  I don't remember doing anything but sleeping and staring into space.

One doctor decided I had M.E/CFS but that was ridiculous.  Nobody believed M.E was even real and I put it down to a lazy half-ass attempt at getting me out of the GP's office.

"There's no treatment.  You just have to rest."

Tell that to my children.  And I dismissed the diagnosis as rubbish.

On one particular day, I woke up and everything felt different.  The fog that had clouded my mind had evaporated.  I felt light and full of life.  And I was so thankful to feel better after so much time.

 Feeling better than I had in ages, I soon set up my photography business and for a good few months I was doing really well.  I stayed in good health with only the odd migraine here and there, I performed well in my work and everybody was so happy to see me back as myself instead of the always-ill-and-sorry-for-herself mother monster I'd became.

But soon I started to crash.  I became increasingly overwhelmed by my clients and my work load and could feel my body falling back into it's bed-ridden state.  I quietly begged that it was normal exhaustion.  I was running a business, raising two children and hubby worked a lot!  But it wasn't normal and my symptoms came back with a vengeance. 

 I never noticed the weight gain at the time but I'd gone from a UK 8 to a UK 14 in a matter of months but I was too ill to even eat so it didn't make any sense.

I became so weak, I dislocated my knee barely moving.  This was the icing on the cake.  Talk about pain!  I've never felt anything like it!  I don't know wether the stress of this was what set me back so far but from here on, I was worse than I could imagine.  I couldn't do anything without exhausting myself.  

So many of my clients were left hanging, waiting for their images, appointments cancelled.  I had abuse on my Facebook page but what could I tell them?  I wasn't critically ill, I didn't have a name for what was wrong with me.  So I'd tell them I was experiencing ill health and some were wonderfully patient, but many weren't and I was nervous every time the phone rang, or I got an email on my phone or someone knocked at the door.  

"What the hell is wrong with you? You're always ill! Pull yourself together."

"I can't!"

Finally on the mend, after weeks in a leg immobiliser, I dislocated my knee again.  And again.  And again.  To this day I have complete muscle waste in my left thigh.

After another 6 month period of 'comatose mum/wife/friend' I picked up again and for some reason decided it was a good idea to move to Norwich for my husband's career.  

Moving to the city was so exciting.  It was just what I needed.  I was starting to feel tons better again and began to recognise my limits, but my thyroid was growing by the day and I was becoming quite concerned that nobody was treating it.

In January of 2012, I crashed worse than ever before.  I woke up at 2am, and the world was upside down.  The dizziness was so completely awful, I thought I was having a stroke.  I couldn't move, talk, walk even breathe without hyperventilating.  I'd never hyperventilated before.  The first time, my Mum was staying with us and called an ambulance.  I thought I was dying.

After being checked over and the paramedics stabilising me, I was left to deal with it.  I hyperventilated 2/3 times a day, every single day for weeks on end.  Each attack lasted for around 30 minutes and by the time I had recovered, It started all over again.  Doctors were stumped and eventually I was told I needed psychotherapy.  Completely disheartened, I kind of gave up trying to fix it and gave in to the absolute fatigue my body was experiencing.

I did some research of my own and it seemed I may be suffering with Gluten Ataxia, a complication of my auto-immune thyroid disease where digesting gluten sends mixed messages to the cerebral part of the brain.  It made perfect sense and I cut out gluten completely.  Within a couple of months I felt lot's better.  Not completely well, but the hyperventilating lessened and I could talk again without slurring.

My mum visited one weekend with a load of printed pages.

"I think you have M.E."

"Nope. It's my thyroid, or something! M.E isn't even real."

But I read through the pages anyway and she'd told me her friend's experience with the syndrome and it all rang so true.  I wasn't ready though to accept that because it can't be treated and it can only be diagnosed after EVERYTHING else has been ruled out.

Unfortunately, the stress of everything impacted big time on my marriage and my husband and I separated for 6 months.

I moved back to my home town with the kids and learned how to cope with my illness.  And I coped brilliantly.  I listened to my body and stopped putting so much pressure on myself.  When I felt ready, I started the photography business again and I took it nice and slowly.

Thankfully, my husband and I picked up where we left off (and we're happier than we've ever been).  The stress of his new job, the move and my chronic illness had became too much.  He'd experienced his own problems and I'd not been able to support him in the way he needed.  For both of us, there had been too much pressure and stress and we both needed some time out to get back on our feet again.

After researching and talking with other M.E sufferers, I think it's safe to say I've accepted my diagnosis at last.

I'm still ill every single day.  There isn't a day I wake up and feel great.  I've perfected the art of making it seem that i'm fine on the outside but I quickly shut down when I can't cope socially.  I'm not like you see on the outside at all.  I don't blow you off because I'm lazy or I dislike you.  I'm not able to make plans in advance because I don't know if I'm going to be able to commit.  And I'm sick of letting people down.

When you see me smiling and laughing, inside, I'm actually struggling.  Noise? I have severe sensory overload.  I can't cope with noise at all.  I hate being in town, I hate being on the school playground and I hate the pubs because the sound physically hurts me.

Sometimes I can't talk properly.  My speech slurs and you may think I'm weird.  So it's best just to avoid you and wait for it to pass.  Sometimes I just can't talk without exhausting myself.  Sometimes, having a catch up with a cup of tea will send me into 3 days of such severe exhaustion, I can't even move.

When you see me in my pyjamas, I'm not gross or lazy.  I'm unable to wear my clothes because my skin is burning and itchy and I can't stand to have anything on my body.

When you are waiting for me to reply to your text or email, It's not because I can't be bothered.  I'm likely to have a bag of frozen peas on my head, in a dark room, crying from the agony of a migraine.  Or I can't think straight!  Or I haven't got the energy to even lift my phone.

When you suffer with an invisible illness, you sometimes have to remind people around you that you're sick.  It's easy to forget when you see that person has been well on the outside for a few days.  So when I harp on about my ailments, it's just because I'm so self conscious that you may have forgotten or assumed I'm 'over it' and start expecting too much from me.  

I'm still waiting for the results of an MRI in order for my neurologist to treat my migraines which have became the worse part of my condition.  I can't push through them no matter how hard I try.  

I've lost a considerable amount of weight since last year.  I'm now a size 6 and still loosing weight.  The stomach aches I suffer as a result are unreal.  I can feel my body eating its own fat and I'm stupidly weak because of it.  But on a whole, I'm doing the best I've ever done managing my illness.  And I'm trying to be open about it because the awareness for CFS/M.E is poor and even though it became a recognised disease a few years ago and some doctors still don't understand it.  There is yet to be a cure and professionals refer to the condition as auto-immune brain damage.

Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms (see box on this page).

Sometimes the term 'myalgic encephalopathy' is used. Encephalopathy means a condition that affects brain function.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

Who is affected

It is estimated that around 250,000 people in the UK have CFS.

Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15. 

How it affects quality of life

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows: 

• Mild: you are able to care for yourself, but may need days off work to rest. 
• Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon.
• Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating.

The main symptom of CFS is persistent physical and mental fatigue (exhaustion). This does not go away with sleep or rest and limits your usual activities.

Most people with CFS describe this fatigue as overwhelming, and a different type of tiredness from what they have experienced before.

Exercising can make symptoms worse. This is called post-exertional malaise, or 'payback'. The effect of this is sometimes delayed – for example, if you were to play a game of sport, the resulting fatigue may not develop for a few hours afterwards, or even the next day.

People with severe CFS are unable to do any activities themselves or can only carry out simple daily tasks, such as brushing their teeth. They are sometimes confined to their bed and are often unable to leave their house. 

The symptoms of chronic fatigue syndrome (CFS) vary from person to person and there are often periods when they are better or worse.

There may be times when your symptoms improve and you'll be able to do many normal, everyday activities. However, at other times your symptoms may flare up and get worse, affecting your daily life.

muscular pain, joint pain and severe headaches

poor short-term memory and concentration, and difficulty organising thoughts and finding the right words ('brain fog')

painful lymph nodes (small glands of the immune system)

stomach pain and other problems similar to irritable bowel syndrome, such as bloating,constipation, diarrhoea and nausea

sore throat 

sleeping problems, such as insomnia and feeling that sleep is not refreshing

sensitivity or intolerance to light, loud noise, alcohol and certain foods

psychological difficulties, such as depression, irritability and panic attacks

less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature

You can read more here about the impact CFS/M.E has on suffers. I hope that I'm not defined by my illness but part of dealing with it involves accepting it and through doing that, I can make bigger steps in trying to over-come it.



>>> UPDATE <<<

09.06.13


I received the results of my MRI before the weekend.  Was surprised to find out that I have arthritis at the very top of my spine.  I will be seeing my consultant soon to see what action I can take in regards to this after another panel of blood work which has been issued by my neurologist.

May I also say that it's been wonderful to see the response I've had from those of you who have read my story.  So many of you have contacted me privately with so much information and advice in regards to my thyroid disease.  I truly appreciate the time you've taken to help me.  Thank you x