Day six!!!
If I could tell something to my past self it would be...
"Go to the doctor, speak up, let them hear you and please acquire some US currency 'cause this economy is going to hell"
I am glad i am here guys
Day 6 - what would I have said when I noticed the symptoms arising...
It's hard to imagine really as I was a very young child when my health deteriorated. I've been under close medical supervision since then so even little symptoms or conditions get picked up quickly.
But if something was to happen now I'd say you know your body better than anyone. When there is something small and niggly that you feel just isn't right then get it checked out. If you don't feel you were listened to that doctor, don't be afraid to ask for a second opinion. Times will feel tough but look at the little details. There are amazing moments amongst the darkness. There will be bad times but some really good days too. You will find your true friends along the way, some of these might be unexpected and maybe your closest family aren't blood relations.
Hold on to hope as medical science is forever making new discoveries.
Day 7!!
I don't know. I don't have an ah-ha! Moment. I would say there's a sum of little day to day moments that made me realize the disconnected I was with what really mattered in life. Moments that made me realize I took too much for granted and that I misses a bunch of opportunities to grow as a human being... Its been quite a humbling realization.
Day 1 :
hi, I got beat up badly about 3 years ago. The broken bones, cuts and bruises all healed but my pain receptors never did. Mayalgic Encephalopathy, p.o.t.s, chronic fatigue and fibromyalgia all stemmed from the situation and I've been chronically ill for 3 years now. I've also recently found out that I have a dangerous heart condition.
Day 7: What is the biggest realisation you have had?
Life is short. We are very mortal beings. You sometimes take things for granted but then realise that at the click of your fingers it could all be taken away from you.
Have fun when you can. Rest when you can't.
Set small goals for each day / week / month / year but don't be hard on yourself if you can't get there. Be proud that you tried.
Tell your family / friends that you love them. They want to see you happy, they want to understand your illness and they want to help out where they can. Don't be afraid to ask for help. Keep talking. Bottling things up doesn't help. Go to counselling or support groups. It all gives you a sense of you are not alone. There are others in similar situations to yourself that can give you advice and you will joke and laugh with them too as they will have the same wicked sense of humour!
Be kind to yourself. You have been through a lot. Have that treat you really fancy. Buy those shoes even if you might only wear them once. Don't be afraid to say no to social events, if they are true friends they will understand and will ask you again for the next gathering. Remember your original dreams and pare it down until you find a way to still achieve this despite your illness. Wanted to be a doctor but your health prevents you getting a degree? Go volunteer at an old people's home. Wanted to be a commercial pilot but can't pass the medical? At least book a pleasure flight over your house to see the world from that perspective. There are ways and means to fulfill your dreams. I wanted to be a veterinary nurse. I missed too much school with my health to even be accepted on the training. I am going to go volunteer at a dog rescue centre. I still get to help animals just it will be a couple hours a week instead of full time. You just have to be imaginative!
Day 8...
This one is kind of a tough question because I try not to think of the future because it makes me anxious and panicky but I hope to be alive and not to lose another limb on the road.
Day 10: What little things make your life easier?
-People (including doctors) who listen
-People being patient with me
-Being able to be patient with myself
-Rest days
-Little accommodations and thoughtful things people do to help
-Reminders that pushing yourself isn't always the answer
-My mother's efforts to help me out
-My partner's support and understanding through it all
Day 9.
This is an easy one. I haven't tried anything alternative so far the meds are working and will work (hopefully)
Day 2: How has my illness affected my life
Oh it has affected my life in so many ways, mostly bad but some good. It is very upsetting to be chronically ill and disabled at such a young age, I can't do things I used to be able to, many friends have left me because they don't understand, I'm in a wheelchair, I am always feeling ill and I have to have loads of operations. They are some of the bad things.
But if I really think about it, there are some good things too. I empathise with people, my priorities are different to others my age who's priorities are to get drunk and be popular. I don't do school, so I have more time to get better at my music and art. Even though there are good parts to being sick, I still wish I could be physically able again :(
