Friday, March 4, 2011

And then there were none!

Thanks to everyone who shared their comments on my previous post, it was something I had wanted to talk about was not sure how it would be received. This post is similar in that regard. For those of you who are also suffering with a debilitating illness I am sure you will relate but for friends and family it may be something that just hadn’t even occurred to you.

Since getting ill my circle of friends has gotten smaller and smaller. Initially I had felt abandoned by everyone. Some people eventually got in touch and some people never did. I do understand that as the friend of someone who is ill you may feel like you have no idea what you can offer or even just what to say, or possible frighten of catching whatever it is … so some of you find it easier to just stay away. I also appreciate that life is busy and although you mean well time just gets away …. I have never been angry about this but for some time it saddened me.

As my illness progresses I am finding that it’s me who is cutting ties with people. As much as I hate spending all day everyday alone I more often than not feel like it’s the only way. I just can’t handle social visits anymore. When someone I know comes to visit it’s exciting for me and I want to be attentive but 5 minutes of that and my concentration is gone and my body just starts to say it’s time to lay down in a quiet room. It’s so hard to say to someone who has gone to the trouble of driving over to see me that they have to leave already … it’s heart breaking in fact. The other thing I struggle with is actually having the situation feel ‘normal’. Usually when you visit friends you ask ‘how are you’ and ‘what have you been up to’ … but if someone asks me those questions I have no answer … ‘how am I’ – really CRAP, ‘what have I been up to’ – laying on the couch all day everyday. No one wants to hear that and quite frankly I don’t want to say it. If I ask the same questions of the visitor they often feel guilty that they are well and have been doing something … doing anything!! So the whole experience is hardly like two friends catching up.

So, my circle has become tiny now and while it’s what I need it is defiantly not what I want. As time passes I am watching my life morph into one that in no way resembles who I was …. So who am I becoming??


  1. Of all the things that we have to deal with -- not to minimise all the symptoms and other consequences of living with ME -- what you've just talked about (so well) has been *the* hardest for me these past many years. Sure, I've adjusted. But it doesn't go away, the 'I missed it all' thing. Or rather, the 'I missed out on (most of) my friendships' thing.

    The up-side is that I get to watch all those great shows from the 70s and 80s (oh, and 60s) that I was too busy to watch back then. :)

  2. Can so relate to what you are saying. Just waiting, sometimes patiently and other time like me at the moment, not so patiently, to enter the land of the living. For now the biggest excitement of the day is when Dr Oz comes on or when you get that little red notification on FB. How do you explain that to old friends.

  3. One of the interesting things about this disease is that it forces you to confront who you are without all the trappings of what you do. And then, you get the opportunity to choose who you become. For me, that meant starting a writing career and focusing on my family. It's different for everyone.

    Relating to your last post -- I hope you're not to the point where you're ready to give up. Through great trial comes great discovery. There are hidden blessings; I would hate for you to miss out on that.

  4. I can totally relate. My social life has completely dwindled and I have totally isolated myself.

  5. I SO know what you mean. I actually have lost a lot of confidence when it comes to talking to people. Healthy people have work, hobbies, kids, socialize. This is a big part of their identity. This is what they talk about. I feel like I have nothing to say as my life is the same every day.

    I think this is the one thing people really don't stop to consider when they see our lives. It is so multifaceted and complex. I'm even getting nervous and feeling I have to censor myself when talking to family members now as I get the impression that they think I only talk about my illness. What they fail to realize is how much of our day/lives is about the illness. It really hurts me...

    I have one friend that I still see regularly as she is very understanding and I don't feel I have to pretend in anyway to her.

    The way I see it, this illness has helped me realize who my real true friends are. True friends are rare.

  6. I have found this is one of the hardest parts of having M.E. But I have to say the internet has been a huge help - it's not as great as actually seeing people but a message here and there makes the world of difference.

  7. You've put this so well - as usual . . . and also find this one of the hardest sides of "living with ME". Totally understand how you feel with visitors - and in fact it got so hard for me to say "No" to people who wanted to visit, even though each visit made me ill(er) in the end we decided to move right away from family and friends to a self-imposed isolation in deeply rural France. We were lucky that we were able to, I guess, and if I had to choose anywhere to be sick, I couldn't get much better than this new home. And there is Skype. Though that is too much some days. And I am very lucky that my partner is prepared to take this journey with me, giving up his own family and social life to help me get myself back on my feet. But being away from the "kids" is hard, and not being able to be there as the sort of mum I want to be is hard too.

    I was told at the start of all this never to try to "get back" to the person I was before. I fought hard against that idea at first. It made me sicker. I have always defined myself by what I do, not by who I am. And I'm still struggling with that one, because, like you, I no longer know who I am or who I am becoming.

    But I DO try to be grateful for things that I do have time for now that I didn't before. Taking time to reflect on the beauties of nature around me etc. Am working on quietening my mind . . . but it never has been quiet, and after 55 years of being busy, it's finding it hard to change.

    One thing I'm sure of though, is that whoever it is you're morphing into Lee Lee, it will still be YOU, but a different facet of you - and the friends that you have around you as you morph are friends that are worth having . . .

    Stay strong x

  8. Hey Lee Lee--

    Regarding this post and the last one. I'm so sorry to hear that you're "having a particulatly hard time" (I know that this phrase is completely inadequate) right now. I just want to tell you that your blog is really inspiring to me. Hearing how you keep your head up, at least much of the time, helps me keep my head up.

    There is no question: this disease is a bitch from hell. There aren't many things worse than this; we are really going through it. I don't have the wisdom to offer any advice or any hypotheses on the ultimate point of such suffering, but we're doing it, we're surviving, and we're still alive. I hope you're okay, Lee Lee. I'm thinking about you.

  9. I've been contemplateing the loss of so many friends lately too. I used to be such a social friendly person - always had groups of friends....over the eight years not the pickins are slim. It doesn't help when I say no or cancel up to 70% of social invites...and I didn't have a partner when I got ill and have had no sucess dating while in bed haha. oh well, I agree with others here who mentioned the online friends. Your blog and your honesty about the realities makes me feel less alone. Thanks

  10. Hi Lee Lee, I've very much appreciated reading some of your posts. I think many PWME experience some of the things you have recently been speaking about, but it takes a particular courage to write about them in a way that is straightforward and truthful. Strange how comforting and strengthening the truth can be, even a difficult, hard truth. I've had M.E. for 24 years and am still dealing with these issues and only really now (can this be true?) really allowing myself to acknowledge how angry and betrayed I have sometimes felt.

    Yes, I think having M.E. does bring radical changes and makes introverts of us all, to some extent. I have come to relish some aspects of my reluctantly acquired introvertedness, made a virtue of a necessity, perhaps.

  11. How did I miss this post ? Maybe I wasnt supposed to see it until now. Of course I can relate to all you say. I've lost contact with loads of friends for all the reasons you write about. When I first got so ill I couldnt work anymore there just wasnt the same contact between people via blogs, Facebook and it was terribly lonely. Nobody phoned (and I couldnt cope with the phone anyway) , nobody wrote (and I couldnt write back anyway). I think they were kind of waiting for the day when I got better and popped up again ... I mean thats what ill people do dont they ? ...get better or die ....and I didn't do either so they were perplexed and eventually bored by it.

    As you say...even if people do visit, you're elated one minute and exhausted the next and its hard for people to get the idea that a 5 minute visit would be great but an hours visit is a killer -- quality over quantity.

    Just thank the Lord that there is now FB, Skype etc and we can communicate and form strong bonds that way. Heh ! without those I wouldnt have come to know such a sweet old nutter in Oz :O)