How To: Live With CFS/ME. The story so far.

The First Time, 17-20 years old.
A little more than 11 years ago I was dizzy very often, I couldn’t really concentrate on my schoolwork and I had headaches. I was being checked by a neurologist, but so far nothing could be found to explain these things. After a few months I got sick. It felt like a regular flue, tired, muscle aches, the works. After a week I was still sick. After two weeks I was still sick. After a month I was still sick. And I never really felt better till about two years later.

That’s how it started for me. What followed was lot’s of trips to the doctor and the hospital. It started with going back to the neurologist for an emergency CT-scan, to make sure I didn’t have a brain tumour or severe infection in my brain. Luckily this was not the case.
My brain, my heart, my nerves, my vestibular, basically my whole body was checked. All was working fine and dandy according to the tests. But walking from the couch to the toilet was still feeling like walking the marathon to me. Meanwhile I was also seeing a psychologist to help me deal with some things from the past, as well as helping me deal with being so sick all the time.
Somewhere in this process of having my body and mind checked out I was given the diagnoses ‘Chronic Fatigue’. Which was at that time an even more vague term than it is now.

I was 17, still in the Dutch equivalent of high school, and I was sick every day and going from doctor to doctor all the time. Not only did I go back a year at school, I also went back a level. (I went from vwo5 to havo4, so all you dutchies understand) Making school life easy-peasy from an academic level, but not so much from a personal level.
High school sucks for most people, but being the ‘weird sick girl who is never in class’ did not make things any easier my last two years of High School. But hey, I was putting safety pins in my pants, painting my hair and wearing brightly coloured striped socks in combat boots. I wás a weird little sick kid. Thankfully my friends loved me for it. And most of my teachers helped me the best way they could so I could pass my exams.

A lot of this period of my life is a a blur. One of the downsides of CFS is that your brain also stops working like it did before. Your body and mind are just too tired to process and remember everything. This is one of the many reasons why I take as many photos of life as I do.

After a year of having everything checked I noticed I got more dizzy while breathing heavily. Which led to having my breathing and lungs checked.
Chronic Hyperventilation was the answer. All I needed was breathing and relaxing therapy. Hurra, finally we had something to work with and all my problems would be solved, yay!

Or so I thought.

The Second Time. 21-23 years old.
After being diagnosed with chronic hyperventilation I forgot my CFS diagnose. I focused on solving my psychological issues while improving my breathing and reducing my stress levels. I finished my high school and started college to become a teacher. Life was good.

Until my second year of college. I was 21 and having more and more trouble doing all my schoolwork and going to my internships. I was feeling sick more and more.
I had to quit my studies for a period of time. Again, most of this is a blur. But I remember being completely overwhelmed by everything. I couldn’t focus on anything I was doing, I was feeling dizzy, I had headaches, I couldn’t think clearly. My mind seemed to be in a fog and my life felt completely out of my control.

I figured it was all the stress from combining my studies, having a job and trying to live the social student life. I quit working and got student loans. I tried to cut back on my social life a little. I gave myself more time for my studies. My breathing seemed normal, but still I went to get some extra breathing and relaxation therapy. And I figured going to a new psychologist wouldn’t hurt me. This change of pace and lifestyle seemed to do the trick.

The word CFS was never mentioned in this period. I had chronic hyperventilation, and that seemed to cause all my problems. Or so I thought.

The Third Time 27 years old-present.
There I was. Living in my own home in Amsterdam, being a teacher, having two cats, a wonderful boyfriend who lived in Sweden, great friends to go to gigs and festivals with, seeing the world. I was living the dream life I thought was impossible for me ten years ago. I was happy.
I proved everybody that doubted me wrong, I was able to combine my hyperventilation with my part-time job as a teacher, and still have a relatively normal social life as well. I felt like I had it all.

And I started feeling more and more sick. In all honesty, I think I’ve been feeling sick for about two years now, before finally acknowledging it a year ago. But life was so good, I didn’t have time to be sick. The thought of going back into that black sick shithole scared the shit out of me. So I ignored it, and pushed my body to the edge each and every day. Till I crashed.

Last year I started feeling very short of breath, and none of my breathing exercises and therapy experience seemed to help. The shortness of breath got worse and worse. But my doctor kept telling me it was a virus and I just had to rest to get over it.
When I woke up one morning almost unable to breathe and being in severe pain I called my job crying that I wouldn’t be able to come and I called my doctor straight after. Still he said it was a virus. I should just not work for a week and take more rest.
After two more weeks of this I demanded to go to the lung doctor in the hospital. He reluctantly gave me the information, but reminded me that he thought the doctor would not be able to find anything.
About two months later I was diagnosed with asthma. I had been having a severe asthma attack for about a month. And I needed loads of medication to help me breathe.
Needless to say. I now have a different doctor.

Asthma. Dear lord, this seemed the answer to everything. My hyperventilation was never caused by stress and emotional issues, it had been asthma all along!
For a while it felt like I was on top of the world, I would be cured of my hyperventilation, and that would mean I would eventually be able to have a fully normal life again. It was this tiny glimpse of hope that I clung unto for dear life.

My breathing improved, I finally felt like I could breathe fully again, and I was able to go back to work. Everything seemed to be going well.

But my breathing never became normal, my hyperventilation never left me. And I was feeling dead tired and sick more and more.
In September, after the school holidays, I started working my normal hours again. In the middle of October I stopped working again. I was too sick. I was too tired. I was too out of touch with myself and my body to think. I was empty.

And I’ve been feeling more or less the same since then.

But.

I’m back at work three mornings each week. I’m getting therapy to help cope with this third setback, and to finally accept the fact that I have a chronic illness. I’m getting surgery to help me breathe. I’m listening to my body rather than my mind. I’m doing everything I can do find the limits to my body, while still taking enough time to recover from it. I’m climbing back out of this shithole.

Future.
I have absolutely no idea what my future will look like. My job as a teacher is very stressful and tiring, not the best job to combine with CFS. But I can’t imagine doing anything else. I’m getting help to figure things out, from my job, from my doctor, from my friends and family. I’ve never felt more accepted and more myself than I do right now.
Being sick all the time sucks immensely, but I can’t change that. The only thing I can change is how I deal with it. And I think I’m dealing with it pretty well during this third, and hopefully final, big setback.
In between, and even during, the periods I’ve talked about above. I’ve always lived my life to the fullest, and enjoyed every moment of it. And I continue to do that each and every day.

I’m Annika, this was my story, and I’ll get my happy ending to it one day soon.

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13 thoughts on “How To: Live With CFS/ME. The story so far.

  1. Hoi Annika
    A little comment off a old aunty, ons nichtje Ineke had to stop her study because she was ill, I don’t know precies what her illness was, but I think she was very tired. do you want me to check what was the matter???
    Groetjes and your story is a eyeopener bye bye

    1. Hey tante Elly! Als je het voor me na zou willen vragen heel graag! Het was alleen tijdens d’r studie, niet daarna?! Bedankt voor je reactie! Liefs ❤

  2. ❤ wat ben je toch sterk en positief ondanks alles! Dat dit alweer je derde setback was dat wist ik niet! Wat verdomd zwaar! Maar je gaat er weer uit komen, want als iemand dat verdiend ben jij het wel! ❤

    1. Ja, ervaring leert wel dat ik er weer uit klim, hihi. Alleen nog even leren om in de toekomst niet weer zo’n grote terugslag te krijgen!

      1. Maar ik denk dat de ervaring er ook juist voor kan zorgen dat je te lang doorloopt. Dat terugslagen erger kunnen worden. In ieder geval, ik zelf loop vaak te lang door omdat ik denk ‘nee niet nu, ik wil eerst nog even dat doen’ Ik blijf het zo moeilijk vinden om de leuke dingen af te zeggen! Maarja..
        Het komt allemaal goed schatje 😉

      2. Ja, maar precies dat proces had ik voor deze derde terugslag, doorgaan, doorgaan, doorgaan, niet toegeven aan de vermoeidheid en ziekte. Maar nu zit ik er erger doorheen dan ooit tevoren, dus hier heb ik ook wel weer van geleerd, hihi 😉

  3. I admire your strength Annika. You were and you are still a great girl. Continue to fight and you will win in one way or another.
    Your former LL daddy.

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