So parents, relatives, carers, sufferers and anyone else, I'd like you to answer me some questions:
1. What does M.E. feel like?
Not just a list of symptoms, but an honest description.
2. How does M.E. affect your life?
This could be giving up education or a career perhaps.
3. How does M.E. affect your relationships?
Do you socialise, have you lost family or friends?
4. What is the worst part of having M.E. for you?
Maybe a particular symptom or a big lifestyle change you've had to make.
5. How can someone else help you?
What things can people do to make this horrific illness a little easier for you?
There are no right or wrong answers and I think 5 questions is plenty for you to be going on with and you can write as much or as little as you want, but I'd really appreciate responses to this!
(if you don't want to comment on this post feel free to email me at daleymaid@gmail.com)
Thank you in advance,
Alice
xxxx
© Alice Daley 2013
What does ME feel like?
ReplyDeleteA roller-coaster ride with slow motion parts. Boredom and sadness interspersed with highspeed drama. Most of the time I have no speed control.Or control of anything at all, including my brain, my pain, my plans.
How does ME affect my life?
In absolutely every way. Sex, marriage, entertainment, sport, leisure, vacations, holidays, family dinners, dates, hobbies, even reading the paper, personal hygien, food, sleep, mood, temper, shielding me from the sun/lights, noice, watching the TV on low or mute. Not being able to work or study, giving up life dreems. Giving up on ever having children. Grieving this, and other broken dreams, even of washing my hair. But still trying, and often succeeding in finding happiness in small things.
How does ME affect my relationships?
I rely on my husband to keep me alive, quite litterally. That changes things between us. It is hard for me to feel like I'm contributing to our relationship, and I struggle with issues of a self-esteem rooted in action, good deeds, and equality.
What is the the worst part of having ME for me?
That I am so completely worn our with the worst severe fatigue you could every imagine, both physically, emotionally, intellectually, socially. And I get worse whenever I do the littlest things, like moving laundry into the dryer, answering an email, or getting dressed. There is a long list with aches, pains, problems too, not just the fatigue. It feels like getting the flu when I go out to get my mail. My life has become so small.
How can someone else help me?
Educate yourself. Learn that this is not a matter of poor willpower, but a serious and sometimes life-threatening disease.
Donate to biomedical Research.
1. What does M.E. feel like?
ReplyDeleteScary, unpredictable, Painful, emotional,......most of all i feel like my life is being ruled by some other entity.
2. How does M.E. affect your life?
Often ill have a day planned out but be unable to carry it out due to exhaustion, pain, fog, confusion......
At the moment i'm fighting a battle with it to get back to work. If i don't win this battle I may have lost my career which I have spent years working to get where I am now. A knock on effect will mean financial difficulty and possibility having to move, something no one suffering a relapse needs to go through. I have been on the up a little of late though. However when things were bad i resembled an incoherent zombie waking only for necisities of life. I collapsed a few times unable to take my own weight due to exhaustion. I can tell you this is a SCRAY experience. Using a mobility scooter to get out on a good day and sofa/bed bound on a bad. No way of life for a young woman.
3. How does M.E. affect your relationships?
I am very lucky in that I have a wonderful partner who is supportive and caring. His seen me through some dark times and helped me find my occasional light. Despite his amazing abilities this condition can break even the strongest of relationship and mine is no different. Esepcially with the mood swings it brings. Being so independent I would rather struggle and do it myself than accept help but my finace will intervene tryging to save my energy and to do it for me. Thus causing me to flare up feeling like im usless. But truth be told at that time i pretty much was!
4. What is the worst part of having M.E. for you?
For me its the unknown. Not knowing if itll be a good or bad day. Not knowing if ill continue my career or end up a jobless bum.
5. How can someone else help you?
Be understanding and if i say im unwell or need to rest just accept it dont push me. I have many friends that unknowlingly have pushed me and ive gone along with it as i was scared to say actually no i need to rest! but equally dont forget me. Im still the same bubbly person and on my good days I need my friends and family to be there and remind me of that!