From Nikki: I think one of the hardest things (well, amongst so many) in chronic illness is the isolation and also the lack of understanding from others about what you're really dealing with As if dealing with the daily physical pain and suffering isn't enough, you then have the pain of grieving for the life you long for and of missing out on friends, family, love, nurturing, relationships - all the things most people take for granted. Have you ever had to consider whether you are well enough to hold a conversation with someone? Whether having someone visit will put you back in bed, unable to feed yourself or care for yourself, for weeks at a time? have you ever written in your diary 'ring Grandma/ring a friend' etc and had that 'unticked' for months at a time because you simply are not well enough to do it and/or because that too will wipe you out for several days or weeks? Or have you ever suffered ongoing seizures as the consequence of just trying to interact with another human being? This is the reality for people with severe M.E, and indeed many serious, chronic illnesses. Often, even when we live with other people in a household, we are still so isolated, especially if it is in a flatting situation. usually, people are out working most of the day and only home for a few hours at night. That might be the time where you (as the M.E sufferer) manage to get up for half an hour to eat. You might look ok, a bit pale maybe, but you're up, you're talking so to others, you look pretty much fine. they didn't see that you had collapsed on the floor all day from trying to get breakfast or lunch. They didn't see your desperation when no-one was there during the day to help you get off the cold floor when you couldn't reach the phone. At worst, I have often had this happen and then had people - living in the same household - say 'you know, I don't think you're as sick as you make out you are'. That has to have been one of the most hurtful things anyone has ever said to me through this illness. That and things like 'the only reason you are not well is because you don't want it badly enough, you're not ready to be helped'. As if I would just give up everything I had - my potential carer as a vet (was into 3rd year of degree), my potential sports career (was well on my way and playing for the equivalent of today's transtasman ANZ champs, semi-pro was realistic), my horses, my ability to form relationships and socialise, the ability to go to important events - bday's, xmases, weddings, funerals etc - not to mention the enormous cost of trying to get well, let alone lost earnings, all for the sake of just for some strange reason wanting to make out that I'm really sick but I'm not? Come on, get real! it is so cruel, as is the lack of any human contact or interaction. The basic human need to be loved, hugged, nurtured. To laugh and interact. The thing you need even more than at any other time, when you're at your lowest ebb physically. but that is so often incredibly lacking for people who are seriously ill. I have some weekly home assistance now, meaning I know I will at least see one human being during any given week. It has not been uncommon though, through this illness, for me to go weeks at a time not seeing another human soul. I grieve when I read about people coming together in times of need and, too, in times of joy. when people talk about teammates bunking down together during the earthquakes, to support each other. That's the way life is supposed to be. You are supposed to reach out in times of need and you are supposed to have people around you in the good times to share love, happiness and laughter. But with M.E (and, again, many chronic illnesses), that's just not how it is. And that, to me, is heartbreaking. It is a cruel, cruel illness. Thanks for taking the time to read. Please feel free to share this givealittle page and my FB page (see below). If you wish to follow more of my journey, please feel free to like (and share!) my FB page: http://www.facebook.com/pages/Nikkijo-Music-and-ME/348022178624629 Thank you! Thank you!
