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Living With Chronic Fatigue Syndrome By Jodie

by Jodie Best
(St. Agnes, Cornwall, UK)

I was diagnosed with Chronic Fatigue Syndrome last year. I am a drummer in a local rock band and I teach 3 students. I live with my fiancée, Luke, and Shih-Tzu, Arthur.

This is a long post but I hope it will help you...

Growing Up...
When I was growing up I was always catching colds, flu, and other viral infections, especially when I started going to secondary school. I was always tired and my family used to take the 'Mickey' out of me for this.

I’ve had a Saturday job from when I was 14 years old. After a full day I would come home and go to bed more or less straight away, which my family found funny! I just thought that this was the way I was.

I went to college and met my fiancée, Luke. However, he went away for a while and I got very sick during this time. I had a urine infection, which when treated, should go within 2 to 3 days. However, I had this for 7 weeks. I was in a lot of pain with this and suffered with depression because my partner was away.

When Luke returned, I started to pick up. But I had a constant struggle with my doctor who didn't know why I had been ill for so long.

Getting A Diagnosis
I still wasn't right after my infection finally cleared. I felt out of breath a lot and when the doctor tested me by making me blow into a device, he said I wasn't trying hard enough! I then developed severe back ache and a bloated belly. The doctor told me I had Irritable Bowel Syndrome and there was nothing I could do. Very helpful.

Soon after this, my fiancée and I moved to another town and I got a new doctor. We went travelling for 3 months, which was hard for me. I got very stressed and was worrying all the time. In fact, I was a nightmare to be with!

When we got back, I was on a downward spiral. I was in the process of looking for work and Luke was out on his full time job. I got very anxious, depressed, scared to leave the house, slept all the time, ill on and off, and was having a nervous breakdown.

After many trips to the doctor, I was told I had hypothyroidism and was given tablets. I didn't get much better. In fact I got worse...

All summer, I was unable to get out of bed, constantly tired, mood swings, out of breath and struggling to get up hills and stairs. I thought I was going mad. There were days I wanted to kill myself.

I tried a new doctor who sent me to the hospital. There I was diagnosed with Chronic Fatigue Syndrome. Apparently I had had it at least 5 years!

I was relieved that there was a name for what was wrong with me. I could finally come out of hiding and tell my family and friends. I never wanted them to know I was this ill.



Then I started getting panic attacks, which was very scary. I was put on medication and after a few months was able to cope with more.

Misunderstood
People aren’t aware of this illness and you just have to put up with it. I have great support in Luke but my family and friends don't really understand. They are telling me things like:

Instead of lying down, why don’t you make yourself do something?

Do you really think you should not work?


These kind of comments are not very nice and don’t make it any easier.

And Now...
I had to give up work but now am teaching students 3 hours a week and playing in my band. I have tried to keep working as much as I can but recently had to give up my morning cleaning job as I couldn’t cope with it. I am struggling to walk on some days, with terrible leg ache and pain, but hope to see a physio soon.

I recommend having a dog like I do! My dog, Arthur, lifts my spirits each and every day. He gives me something to get out of bed for and makes me laugh with his antics. I don’t know what I would do without him. He never judges me nor upsets me like people can do. He has been God’s gift to me throughout this ordeal.

The Way I See It...
This illness has been an eye-opener for me. I have found God, learnt to be more positive through it, and hope I have become a better person.

It is very hard to get through each day knowing your friends are working, making money, socializing and you are at home trying to get through the day with a smile on your face. But I have just had to think, that was the way life was intended for me. This is who I am and I have to make the most of it. It could be worse.

It may get better for me or I may have it the rest of my life. The fact is, you just don’t know, so you have to get on with your life. We may not have much money because of it, but I have learnt that you can’t take your health for granted. Without it, you are nothing.

Life is a gift and you have to make the most of it.

To all of you reading this
To all of you reading this, I hope that my story has helped you. Reading others’ stories has definitely helped me. I felt very alone before finding this web site.

Never give up on yourself. Don’t let the illness win. Just do what you can each day. You will be able to see through it all.

Thank you.

Comments for
Living With Chronic Fatigue Syndrome By Jodie

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Comming from a fellow musician
by: henry

Hey Jodie,

Just thought I'd say thank you. It's nice to know I'm not the only one out there. I've got both Chronic Fatigue Syndrome and Fibromyalgia and have found music as my passion and inspiration, although its difficult to cope sometimes as I have it in all my joints and muscles, so sometimes I cant even open a bottle.

Anyways, was awesome reading about what you went through, I went through a lot of the same, and it's good to see your still positive and carrying on as best as you can.

All the best for the future,

Henry

Your Chronic Fatigue Syndrome Story
by: Sleepydust

Thanks so much for telling us about your life before and after your Chronic Fatigue Syndrome diagnosis. I agree - we must make the most of our lives and focus on the positives. There's a silver lining to every cloud.

All the best Jodie. I wish you a speedy recovery!

Claire
Sleepydust

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