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ME/ Chronic Fatigue Syndrome - From Despair to Contentment

by Helen
(UK)

I've come to realise that I've had ME/ Chronic Fatigue Syndrome since my teens (at least) with each relapse worse than the one previous. I'm in my mid 40's now...

I didn't know about all this until a year ago. I have pretty much spent my whole adult life feeling stressed and worried about my level of illness and it's effect on my career (or lack thereof), constantly blaming myself for being weak.

The lead up to the relapse of ME/ Chronic Fatigue Syndrome is so unbelievable that even I, who lived it, have trouble believing it...

My son and I were evicted from our home in July 2002 (our elderly landlord started blaming us for the deterioration of the property saying I was maliciously causing it). We received no help from our local council and are still in the 'temporary accommodation' that I managed to secure for us (a shared house with 5 guys under 30).

Then social services pursued me for child neglect on the basis that my son is thin (it's just the way he is, he eats like a horse). This went on for a year and then they stopped. As I was working night shift at the time they always arranged meetings for the middle of my 'night' which caused my health to suffer.

I succumbed to a 'stomach infection' in September 2003 (I suspect due to high levels of stress) and went into a relapse again which I haven't come out of.

Shortly after this I discovered that the council had not written to us at the address I supplied and had destroyed all our possessions. Everything.

At this time I was bed bound, exhausted and unable to do anything about it. I went into a spiralling depression and dropped into despair.

The doctors gave me Amitriptyline and told me they didn't deal with social issues, so no help there. In fact they were totally unhelpful from the onset, treating me like a work-shy malingerer, not realising that as a single parent, work is a lifeline for financial and social reasons.



I have no family locally. It's just me and my son. Most of my 'friends' disappeared around this time. If you don't 'look ill' and the doctors imply you aren't, then you find out who your real friends are. It's been a fairly lonely experience.

My new doctor is an angel. The nurse at the surgery works with people with chronic illness, she's helping me with weight loss and improvement of my M.E. / Chronic Fatigue Syndrome symptoms. We're doing really well together.

I've recently come to full acceptance of the illness and its limitations. This means that despite screaming poverty I'm actually mostly happy.

I have nothing and no one to blame.

I don't set goals for the future; if I do decide to do anything, I make it a long term project with open ended goals / achievements. I reward myself with little things for accomplishing what I can.

I have, against all the odds, become my own best friend.

I've found that complete honesty about my illness and the swinging emotional changes I experience has made my relationships with friends that much better. They know that when I say I'm grumpy and bad tempered I mean it and I apologise in advance for being 'off'. I enjoy joking around and gentle teasing but on the off days it's best not to do it.

When all is said and done, it would be nice to have more mobility and brain power but it's not necessary.

ME/ Chronic Fatigue Syndrome forces you to understand who you are.

I am grateful to ME/CFS, for without it I would never have discovered it is possible to be happy with nothing. I had to get ill to 'find myself'. That, I guess, is the best way of putting it.

(Sorry if this is muddled, I am :-D )

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ME/ Chronic Fatigue Syndrome - From Despair to Contentment

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Transformational
by: Anonymous

Dear Helen

The OT worker at the ME clinic was asking us to place ourselves where we thought we might be at some point in the future. The options were all less than where we had been before the illness.

I insisted that I would be at a higher point than before because this condition was transformational; She was not impressed.

I may not recover all my stamina or mental function but I have learnt other skills and I may be more effective because of that. I'm not sure that I'm grateful but I've learnt that there is a way forward. Thanks for sharing. E

A truly humbling insight of living with ME/ Chronic Fatigue Syndrome
by: Sleepydust

Thanks so much for your heart-felt tale, Helen. ME/ Chronic Fatigue Syndrome is harrowing enough without having to go through trials and tribulations such as those you have had to endure.

Your words of hope, acceptance and understand of Self, will, I'm sure, provide light for many who read this.

I, for one, agree with you wholeheartedly. You put it so well when you wrote, 'ME/ Chronic Fatigue Syndrome forces you to understand who you are. I am grateful to ME/CFS, for without it I would never have discovered it is possible to be happy with nothing. I had to get ill to 'find myself'.'

So well put Helen. ME/ Chronic Fatigue Syndrome is a testing journey of illness, hardship, frustration, loneliness, and soul searching for many of us. But just as that Chinese saying goes, that the symbol for crisis is the same as for opportunity, so your words also ring true.

Thanks again

Claire
Sleepydust

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