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27
Oct

A Life Changed by Chronic Fatigue Syndrome and Multiple Chemical Sensitivity (Photo Diary)

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For those who are not regular visitors to The Environmental Illness Resource, I am a 31 year old male from the UK and was diagnosed with Chronic Fatigue Syndrome (ME/CFS) in March 1991 around the time of my 12th birthday.

Recently my parents moved house and my mum dropped off a box full of old photos of me from my childhood. Looking through them I was struck by how happy I looked as a child. This was clearly the purest type of happiness borne out of freedom from worry and a true zest for life and the excitement of discovering new things every day. Naturally, it's easy and 'normal' to lose these things as we get older, but even more so when a chronic and misunderstood illness such as ME/CFS deprives you of many of the things that most people take for granted.

As I found photos of myself as a young teenager, following my diagnosis of ME/CFS, it was clear what a devastating effect becoming ill had had. I look tired and drained but also as if someone had stolen the magic that life had previously had to offer. At the age of 12 I was being asked to face a challenge so great that most people would find it hard to comprehend, never mind empathise with. It wasn't so much the physical symptoms of my illness I found hard to deal with, it was the loss of freedom to engage in all the sports I loved, spend time with my friends...and believe it or not, attend school every day and study. Despite what a particularly old school psychiatrist with an attitude problem and an apparent lack of a caring bone in his body would tell my parents and I, I loved school for everything it had to offer, the learning, the socialising, the extracurricular activities, the lot. So the worst thing about developing ME/CFS for me was not the symptoms themselves, but the frustration of being strapped into a metaphorical straight jacket. This has remained the case to this day despite having to cope with some pretty horrendous symptoms.

I also found photos of myself after I had developed multiple chemical sensitivity (MCS) in my early twenties and was forced to wear a carbon filter face mask to avoid exposures and the exacerbation of my symptoms. This obviously added a huge amount of extra restriction to my life and I had the sense that the world was closing in on me. As time went by I was losing more and more of my freedoms due to my ill health. It felt like eventually I would be completely enveloped and unable to move at all, as if trapped alive in a coffin.

I digress. It was not my intention to write an autobiography today, I want to let the photos do the talking, so I will leave it there. I will just add that I have now developed a sense of empowerment and self-confidence that I never knew existed within me and I am slowly pushing back against the world and expanding my horizons once again. I am still frustrated by limitations my ill health places on me but I have overcome the MCS and am confident I will continue to get better. Hope and the tenacity to never give up are wonderful things and I pray that all of you on a similar journey to mine can find them.

 

My parents tell me I cried constantly as a baby...until I was mobile...at which point I didn't stop smiling...

A Life Changed by Chronic Fatigue Syndrome and Multiple Chemical Sensitivity (Photo Diary) 

 

...or pulling cheeky faces!

 

"Don't stop me dad!"

 

Swing!

 

Jump!

Hang! 

 

Happy with friends

 

A common site after ME/CFS diagnosis. No more boundless energy...one day of activity followed by one spent sleeping it off.

 

Not happy to be restricted to bed by an invisible force!

 

A few years later and still not looking happy at having to stay home...despite the company of my labrador puppy 'Toby' whom I loved dearly.

 

A typical scene following the development of multiple chemical sensitivity. I had to wear a mask when around family...

  

When around friends...

  

And when outside, even in the fresh air of the countryside.

 

Reward for never giving up...my graduation ceremony at the University of Greenwich, London. I may be pondering the future...or I might just like silly poses for the camera!

 

Enjoying a holiday in Turkey after completing my degree work.

 

 

I feel like this post has been a little self-indulgent but I do hope you got something out of it. My aim was to show those who dismiss ME/CFS and MCS or do not appreciate their seriousness, just how devastating they can be and how they completely change a person's life. I slipped the two most recent photos in at the end to show that despite the devastation these illnesses cause, if you have hope and refuse to give up on yourself (or loved one), life can once again be a positive experience complete with enjoyment and personal achievement.

To a happy and healthy future!

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People in this conversation

  • Hi Sacha,

    As I remember it I was given a diagnosis of ME/CFS quite easily. I had 6 months or so of seeing my GP frequently following a recurrent viral infection that I never fully recovered from. When it was clear I wasn't getting better I had an inpatient stay at hospital for 2/3 days where they did a battery of tests on my heart, muscle function etc etc. When all of these came back normal I was diagnosed with ME/CFS. I was only 11/12 at the time and can't remember the details but I don't remember there being a battle over getting a diagnosis.

    I know many people struggle, for years sometimes, just to get diagnosed. I can only imagine the extra stress and suffering that causes. I hope things work out for you Sacha.

    Take care,

    Maff

    Comment last edited on about 3 years ago by Maff
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