Sunday, 11 March 2012


... tears.
And I'm sorry that I can't feel stronger. I choose to be positive and to smile and to keep cheerful, and yet, alone, I dissolve. Head in hands. Desperation trickling through my, apparently, 'skeletal' body.

I was informed yesterday that I'm 1 kilo off being admitted. I can't have that. Not when I've just begun a phased return to work... not when it'll cost me my job... not when I want to do this so, so badly.

So why then, when I just have to put on a few pounds, am I battling the urge to exercise?

It's madness this illness. A bulging, black mass somewhere in the brain. It seeps and creeps and pushes into spaces, forcing itself against walls of reason and clarity.


  1. Hello Love - disease as just as you so powerfully describe - for your words define MS too, and other diseases. So what is the answer? Some days I think I know, other days I haven't a clue - but regardless I know one thing - counting blessings provides a balance, and sometimes, maybe, it is in the balance of all that is right and wrong we find our way - one blessed step at a time.
    Loving you
    peace.....and look up^, pick up your head and look up.

  2. So much of your writing is powerfully (and poignantly) anchored in seemingly irreconcilable conflict. While challenge and adversity may often be a catalyst to help us “rise above and advance towards resolution”, when the conflict feels irresolvable and personally life threatening, it tends to negate all chance of a positive outcome. Whether it involves an overwhelming emotional/personal conflict in a relationship, a dread physical disease or even a political/territorial conflict between nations, the effect is perceived as a complete lack of effective rational choices (that might result in a positive solution). Often, the default “solution” is either giving in to an acceptance of the dismal consequences, or to slip into a solution that is as irrational and debilitating as the original conflict.
    Obviously, I don’t know you at all, but what gives me so much hope for you (and for an ultimately positive outcome to your personal horror) is your tenacity, your phenomenal rationality and your continued willingness to stare the demon in the eye. I do not know what you feel in your inner places, but as one who has followed you constantly over the course of your public battle, I for one see a great deal of progress. Slowly, ever so slowly, the beast is retreating and you are gaining ground. While there may well be truth in the adage that it is always the darkest just before the dawn, the light will return. You are stronger than you sometimes believe.
    Best wishes, Bob

  3. Gail - Thank you for your comments. They always make me think.
    You are right about counting blessings - and I do.. even when it's a struggle.
    I have a thing where I thank God for 5 things in my life / my day every night... I find it helps to put things into perspective and gain balance before all theose horrible night time anxieties have the chance to do a complete takeover!
    I know that you understand. Your MS is such a horrible thing to deal with on a day to day basis. Please know that I think of you.


    Bob - Thank you for your seemingly endless patience and loyalty. Thanks for communicating here in a safe place. It feels safer.
    Your words moved me. You seem to read so carefully and your understanding is quite profound.
    Your hope in me seems so misplaced when I'm low, but perhaps you are right. I DO have a fast 'bounce back' rate (perhaps 'resilience' even) and I WILL stare the enemy in the eye. I refuse to blink first and yet, it seems an involuntary reflex.
    Thank you for your continued interest and encouragement.
    All best wishes to you.

  4. WS - I think of you often. I'm a terrible friend, because I can't balance and modulate my empathy and supportive feelings for you on one hand with the empathy and anxiety I feel with you on the other. So I stay away for long periods of time. Occasionally I'm safe enough to check back with you. I'm more or less ok, just trying to hang in there. Not strong enough to be here with you more, but do think of you so much.

    Much love -


  5. I understand that feeling of madness. I understand how the mind's desire can be very strong and yet behavior continues unimproved. Sometimes the best I can do is just be the witness to my own struggle. Just accept my flaws even as I wish they would leave me. Other times I make a bit of progress. I grow or find increments of improvement. And sometimes I just feel like giving up. It is madness, indeed. But it is also living with intensity that escapes many who are more ordinary. That is the saving grace of this sort of life: the sense that we are really engaged with the battle and not just drifting through life without feeling its sting. I choose to see this as a kind of Grace, despite the pain and suffering. But sometimes it can be very hard to keep that perspective, which itself is part of the whole, beautiful, messed up landscape I inhabit.Thank you for sharing your inner scenery, as painful as it is. It helps me honor my own. Blessings.

  6. Just want to let you know I'm thinking of you.

  7. Faith - I find it hard to comprehend such 'connection' through a blog but I guess your identification must be incredibly strong. I understand that you can't read here often and in all honesty, I don't expect you, or anyone else, to even be remotely interested in what I write here. Most of it is self absorbed drivel and is more of a creative exercise for me than anything else.
    It's not the informative, inspiring blog that I would like it to be.
    Thank you for your care, faith. You are indeed a faithful soul.

    Will - What you have written has moved me. Yor understanding of these things is so obvious from your own, beautifully crafted, writing. I am flattered that you would even visit here and that you feel it helps to honour your own 'inner scenery'.
    Take care.

    Lost - Thank you so much.
    I hope you know how mutual that is.