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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

'You don't choose your family. They are God's gift to you, as you are to them.'


Love heart painted on hands

After sleeping on it, and thinking loads, I thought that my next blog should be about the message chronically ill people want to convey to loved ones:

1) Our grief is ongoing

- There is no known cure, we have this for as long as we live, medicine may suppress the pain, but its temporary, and even then, who knows what the medicine is doing to our bodies.

2) We think we let you down

- We want to be that perfect person for you, we want to be able to do everything you ask of us, but sometimes we just can't we are physically and mentally incapable.

3) Our moods change

- We can't control it, sometimes easily angered/ depressed/ stressed/ panic attacks, the pain takes control and we act out, we don't mean to act the way we do, so please forgive us, the moment will pass.

4) We fear getting worse

- It's is always in the back of our minds, waking up and feeling like you're getting worse, a new symptom has arose and you have no idea why or how to deal with it.

5) It is hard communicating our feelings

- Sometimes all we need is to be left alone, or just a simple hug. We can't always express how we feel as there is no words for it, we don't expect you to know how we feel, but just by being there it means so much.

6)We are confused about our future

- What will the future hold ..? Will my children get this ..? Will I ever find someone who understands what I go through and love me for who I am ..? Will I ever find a job who understand and caters for my needs ..? Or will I ever be able to work, will my pain become to overpowering that I become housebound ..?

7)We worry about you because our need feels like a burden

- We don't want to ever feel like a drag, we want to be included but sometimes we just can't. When your friends and family ask how we are getting on, and you want to say all these glamorous things, like, she's got a job, she's moved house, she is starting a family ... when in fact we are still in bed, morose, not moving as every twitch you feel all this pain wash over you.

8) We are grateful

- We love all that you do, and we notice every little thing you do to help us. My parents will turn on the heater in the car on a cold day, or turn off the heating at home when I get too hot. Its the little things we notice that mean so much, but just you being there, helping when we need it the most, thats what makes us smile.

9) We are hopeful

- We hope that one day we will find a medicine, a routine, just something that helps the pain to the point where we can be ourselves again. I can't explain how talking to people who go through what I go through helps so much already, it takes finding what helps you, but once you do find it, don't stop, carry on, it will help you in the long run, I mean .. we do have this for the rest of our lives.

I have found that caring for my pets helps to take my mind of off things, I know its a weird one, but cleaning out cages, playing with them, feeding them and simply sleeping by the side of them definitely makes me see beyond my pain.

I am lucky enough to have:

1 russian dwarf hamster called Yeti (She's white so it makes sense lol)

Hamster

2 Kittens who are mixed breeds, (Maine coon, Persian and Tabby), called Sid and Esther

Cats

And a 60 litre tank filled with 15 female betta fish, two wood shrimps (Woody and Wilma), 4 dwarf suckers and 3 frogs (two brown and one albino) (named after the three stooges Larry, Curly and Moe) - and all in my room, so it gets pretty hectic but keeps me ontop of things.

Fish tank

I pray that everyone finds something that takes their mind of it all, it definitely makes a difference.

Until next Monday,

Bethany S.

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