Wednesday, 18 February 2015

Chronic Illness Tag

This was supposed to be a 30 day instagram//facebook challenge where you do it every day but because I am useless and can't keep up with doing something everyday I took longer and did it as a blog instead.

Day 1.  
Introduce yourself. What illnesses do you have? How long have you had them? 
Ello, I'm Tasha and I have been diagnosed with M.E. (Myalgic Encephalomyelitis), Hypermobility, Orthastatic Intolerance, Arthralgia, Lacto-Intolerance, Asthma, Depression, Anxiety, Dissociative Disorder, Skin sensitivity and allergies along with Intermittent paralysis of my legs and pretty bad cognitive issues (have days when can't read or write, find it hard to remember words or say the wrong words when I don't mean to).
I have had these illnesses ranging from childhood to the most recent diagnosis which was 5 years ago.

Day 2.  
How have these illnesses affected your life?
I can't even begin to describe how they have changed my life. I have missed out on the most important teenage years and my education, lost so many friends and become unable to cope in social situations as well as being in pain 24/7.

Day 3.  
How did you get a diagnosis?
After having viral meningitis I never got better and had a severe case of Scarlet Fever and any and every illness going around. I had two CT scans and after many tests they finally diagnosed me as having ME/CFS.

Day 4.  
How have your friends and family reacted to it?
My family have been extremely supportive along with a handful of friends who have stood by me. I couldn't ask for better people in my life - my mum especially has been absolutely amazing, she is my rock and best friend and I love her.

Day 5.  
How does being chronically ill make you feel?
Like shit haha

Day 6.  
If you could have told yourself something when you first remember these symptoms arising  what would you have said?
Be kind to yourself.

Day 7.
What was the biggest realisation you have had?
There is a difference between living and being alive.

Day 8.
Where do you see yourself in 5 years time?
I can't say because I just don't know and don't want to set my expectations too high and then be horribly disappointed.

Day 9.
Have you ever tried any alternative therapies? If so, what? Did they work?
I get stuck into my art, it is a form of therapy to me since I use it to distract me from my pain and I get lost in it.
Also, if you consider an osteopath to be an alternative therapy I regularly have treatment with my local osteopath who does lymph drainage massage. I can't live without it now, it helps relieve the pain a little.

Day 10.
What little things make your life easier?
World of Warcraft, ipad instead of laptop because it's lighter, beanbag trays and bed table, dairy free chocolate, my ugly little granny shower stool.

Day 11.
Why do you believe you have this illness? Bad luck, a higher power or something else?
It's just bad luck.. If it is a 'higher power' whatever it is can fuck off.

Day 12.
Briefly explain to a healthy person what it is like to live with this illness.
There is no brief way to explain this. it is so complicated and affects absolutely everything in my life that it just is too much to explain.

Day 13.
Has your physical illness had any effect on your mental health? Explain.
Is that a joke? Of course it has, how can you be in constant pain and not become angry/depressed?

Day 14.
Give 5 things you are grateful for.
My bed, my PC, my ipad, my boyfriend, my family & friends.

Day 15.
What would you say to people newly diagnosed with this illness?
Fuck off physiotherapy, don't do GET, look after yourself, focus on getting yourself better and nothing else, education can wait, medical professionals don't always know best. If you feel poorly rest, please don't try to push through it.

Day 16.
What is your favourite inspirational quote?
 The three I love aren't exactly inspirational but hey ho
"Not all those who wander are lost"

Cobain once wrote "Art that has long lasting value cannot be appreciated by majorities , only the same small percent will value arts patience as they have always have. This is good."

"I have met many minds able to store and translate a pregnantly large amount of information, yet they haven't an ounce of talent for wisdom or the appreciation of passion."

Day 17.
How would things be different if you weren't ill?
That's impossible to answer, how am I suppose know or even be able to guess?

Day 18.
Do you think you have become a better person through being ill? Explain.
I couldn't answer this so I asked my mama and she said "You have grown wise beyond your years, show empathy towards others, are nurturing, caring and compassionate. You appreciate the smallest gestures of kindness towards you and give so much love back in return. This illness has taken so much away from you but it has made you a wiser, more appreciative person who makes the most of what you can do when you can do it."

Day 19.
How do you feel about the future?
The future scares the shit out of me.

Day 20.
Have you met anyone with the same illness? Did it help?
Not really met anyone else as such with M.E. as it affects everyone differently and it may or may not come with other illness associated with it. I had OT group with other people with ME but they were all affected differently and we didn't speak to each other.
My sister has M.E. and became ill 2 years before me, which does help me to have her around to talk to.

Day 21.
What networks or websites have you used for support or information about your illness?
I have looked at information forwarded from Invest in ME website and The Young ME Sufferers Trust, my mum is active on many support websites and is focused on fund raising towards biomedical research & raising awareness, so I get information indirectly from her.

Day 22.
How do you feel you have been treated by the medical system? Explain.
I feel very let down as I had to go to a private doctor to get any help and we pay for the osteopath since the hospital doesn't understand what we need. Everything that helps we seem to have to pay for. The hospital only seems interested in GET and what can save them money. I don't feel listened to, cared for or supported by the medical system. If I was listened to and given treatment to help my symptoms I don't think I would be ill anymore, or atleast in less pain.

Day 23.
What do you say to yourself when you need a pep talk?
I don't say anything to myself, I go to my boyfriend or my mum because I'm a depressing fuck.

Day 24.
How have you managed to juggle your social life through your illness?
Is this question also a joke? My social life depends on my health, but I do go out once in a blue moon.

Day 25.
Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn't have pursued if you hadn't become ill.
I can't specifically answer this question but since being ill I have focussed on the arts and use art as a therapy.

Day 26.
What impact has this had on your friends, family, partner, parents etc?
How am I supposed to answer that? I don't know, they haven't told me.

Day 27.
What's the most helpful advice you have had?
"Listen to your body, stop before you get tired and rest."

Day 28.
Name 5 things you have achieved despite your illness.
Discovered love of art and using different mediums.
Managing to maintain a successful relationship with my boyfriend despite the many challenges.
Managed to reach max level on World of Warcraft.
My hair always looks uber brilliant hashtag swag
Eyebrows on fleeeeeeek

Day 29.
What has helped you cope with the stress of this lifestyle?
Medication ;)

Day 30.
And finally - starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.
This is such a hard question for someone with a chronic illness, most of the time every single little part of you is affected but basically every part of my body hurts, every part of my body is affected, my joints, my muscles, my gut, my skin, my eyes, sensitivity to touch, smell, sounds, taste and sensitivity to light. Also, there is the numbingly terrible fatigue.

I now tag anyone with a chronic illness to do this, including Jet & Tara.

1 comment:

  1. Brilliant blog honey, I know how hard this was for you to do and how much effort it took. xx