Amanda's Poem

Amanda, who suffers with EDS found a way to express her views and feelings about coping with her condition.

Win or lose?

Day after day, you live your life in pain,

Wondering if your old life will ever return again,

Everything was so good, your life and dreams planned out,

Then suddenly it’s all gone, you want to scream and shout,

To survive each day, feels like running a never ending race,

But with each stumble and fall you feel a disgrace,

Pain, sickness, fatigue, your symptoms always on show,

Hospitals, tests and treatment, why can’t they all go,

Every day is a battle; you always seem to lose,

But it’s still your life; you still get to choose,

When everything gets too much, you feel like all is lost,

To maintain your old life comes at a daily cost,

A part of you is strong and brave inside,

Riding out the storm and waiting for the passing tide,

Take a close look, and find love is still around,

When you can take no more, support keeps you on solid ground,

Whether interests, friends, family or faith,

Something is always there to protect and keep you safe,

Life may have changed, hopes and dreams, illness stole them all,

You can still win, knowing there is someone there to catch you if you fall,

When you are done, all seems dark, you can take no more,

You will have gained new things, things better than before,

A daily fight inside and out, but don’t ever lose hope,

In times of suffering laughter, care and joy will help you cope,

You may still lose the battles, not all are possible to win,

But the war is not over, just never give in,

Life is hard, with constant illness and pain,

It is not fair, but keep fighting your efforts are never in vain,

It may be tough but every win comes from a fall,

But persevere and one day, your dreams, you’ll conquer them all,

Step-by-step, inch-by-inch, progress is distant and slow,

When you reach the finish line, the rewards will show,

Examine your life, the happiness and joy still around,

When you look back one day, you’ll be surprised what you found,

The war can be won but it may take a while,

But if you keep fighting the battles you can look back and smile,

At the friends, at the memories, the pain and suffering too,

In the end it made you strong, all that you went through,

Remember the bad times when it felt like the end,

When you got back on track, with help on which you could depend,

The battles will remain, that’s life in your shoes,

But the outcome is yours; it’s your life to choose,

So will you win or lose?

Thank you for sharing Amanda!