Friday, September 21, 2012

Fear and other fun stuff

This disease is fucked. I am tired of feeling angry at the world and tired of being terrified to wake up each morning.

How would you feel if your entire life vanished before your eyes and the only thing you could see in the future was a big scary void. The world that you used to participate in is still happily spinning around while for you all it now consists of is 4 very familiar walls day in and day out. Being in solitary confinement in prison would be easier to deal with. The only difference is that in prison you don’t feel devastatingly unwell every second of every day and you know that come tomorrow you will still have a roof over your head and someone will arrive with food for you.

The last few weeks I have been in a scary relapse. I am back to not being able to shower or bathe or prepare any meals. Standing is very difficult, moving is painful and sitting up makes me feel dizzy and nauseas. Most people have a fear of death. I no longer have any fear of dying but my fear of living is enormous. Every night I go to bed and wonder if tomorrow will be the day that I can no longer stand at all, or if my reflex to swallow will be gone and I will need to be tube fed, or if I wont have the strength to lift a glass of water to my mouth.

Imagine if this was your life and when you talked to Doctors about it all they could say is they have no idea what is happening and that you should get some rest.

You’d probably be a little pissed off and more than a little terrified.


  1. Oh LeeLee, you are in such a vile place again at the moment. Every time a relapse hits us it is so very frightening and frustrating and SO HARD ...and as you say, when doctors just shrug their shoulders, you feel like shaking them (if you only could).

    Try to hang in there. It will pass as it has before ...for you, for me, for others. You're justified in your anger and exasperation but there are many people who love you dearly and will do all they can to hold you whilst you're in this struggle xxx

  2. oh Lee Lee I wish I had that miracle answer for you. I am so sorry that you have relapsed, I wish I could help xxx

  3. I'm sorry babe. All I can say to you is hold on. Please hold on. I have been visited by the same fear and darkness lately and the thing that has kept me going is Change for ME and our community and the idea that we might be able to make it better for other people in the future.

    It fucking sucks so bad and I wish I could say something else other than I understand.... but I do. You are not alone. You are never alone, no matter how much you feel you are.

    I love you more than my arms can stretch. And please try for me just to believe it will work out. It's the only way to keep breathing, just believe... .blind stupid faith. We're nearly there, right at the tipping point, so don't give up before we make it, you fought this hard for this long.

  4. "Brave men, near death, who see with blinding sight
    Blind eyes could blaze like meteors and be gay,
    Rage, rage against the dying of the light. "
    - Dylan Thomas "Do Not Go Gentle Into that Good Night"

    "Dispelling the demons
    In the valley of danger
    We all work together, sculptures in sorrow "
    - Frankie Goes to Hollywood "Rage Hard"

    Thinking of you in this terrible time Lee Lee.

  5. It breaks my heart what you go through. You make the world so wonderful for others, I wish it could be made more wonderful for you. I don't know what to say except you are always in my thoughts. The world doesn't really go on without you. You're a force for positive change. Even while you suffer in hellish conditions the waves of change you started keep spreading.

    Please see us beside you, holding your hand. It's where I and so many of your friends want to be.


  6. Lee Lee i feel your pain, i know i'm not as ill as you but i too has relapsed severely and i was just coping with the most basic of tasks and now they are monumental and everyday i'm so scared thinking 'is this it? does it get worse from here?' you just never know, i understand your fear as i have it too, but you have such amazing strength reading your story helps keep me going and many others too, i know it doesn't make you better and if i could i'd share the little energy i have with you. Please stay positive. Ashleigh Wood xx

  7. fuck Lee Lee. Hate to say this but that anger in your voice feels very good to me! It's wonderful to hear. And I'm mighty pissed off for you, and this fucking cunt of a disease. You brave, beautiful, enraged man. I love you. I won't tell you to 'hang in there'. Sometimes it's only the choice/freedom of the thought that death can be our friend, that makes it ok to hang around for just another day. And then perhaps another. But, regardless, you ARE very much respected and loved. darling Lee Lee. (Adrian W)

    1. Adrian put into perfect words what I wanted to say, Lee.

      (The painting you added to your blog has been one I've used as wallpaper, screensavers or whatever during some of 'those times,' I think because it captures my internal screams and expresses the fear and anger that I find so hard to express myself.)


  8. For once I have no words and for that I am sorry. Please know we are all with you in this, I pray for miracles and I believe they aren't far away my friend. Thinking of you every day. Masses of love, NikStar xx

  9. this might make you smile. It asked me to prove I wasn't a robot. I swear that the word said 'asshole'. Asshole illness is all I could think. And then I thought poop. Cos I know you and your affiliation to poop ;-P And so I hoped it might give you even the tiniest of smiles that even your computer generated robot-checking blog talks about poop. And assholes. On that note ... sending poopy love and hugs until the M.E gets so overwhelmed by all my gushy rays of sunshine and positive vibes that it just pisses right off forever. Preferably up its own asshole. the end. (unless the next robot checker says penis, then I'll really be amused). Love you mate.

  10. It was unreadable ... so I tried audio. It sounded like aliens. I am going to have nightmares! your robots are fun. You should make friends with your robots ;-P

  11. I/We hear you Lee Lee. It's a frightening place indeed but as Cusp said relapses/crashes are tough on us physically and the emotional fallout is hard to bear.

    It feels eternal like it will never end but only get worse. But it does pass...that's the only guarantee we have in this life that 'this too shall pass'.

    I have similar fears about swallowing. I've had problems swallowing the whole time I've been sick.

    Hang in there Lee Lee....we need are vital to our community

  12. It will get better. You have to believe that. Sending you lots of love and positive energy <3

  13. Speechless. Sending hugs urgently. Hang in there Lee Lee, you are precious xx

  14. I am so full of emotion for you that I could burst right open: sadness, love, devastation, affection, fierceness, devotion, anger and despondency. You mean the world to me and to so many others. I hate what this disease has done to your life. I think of the terrible things you must endure all the time. I wish it was different. I send you my heart. I wish for a brighter tomorrow.

  15. :( ............. nothing to say just :( sending you strength Lee Lee

  16. Holding you in my heart LL. Xx Kate

  17. Sending you lots of love across the waters. Hang in there Lee Lee. We all love you so much.

  18. I'm not going to add some tite trifling comment. You have a right to be angry and scared, but what I will say is you do so much for others by continuing to spread awareness on the illness [especially the 25% severely effected group) Please find it in yourself to keep fighting Lee Lee, I keep hearing about all these hopeful things {honestly not sure what I believe either but when the FDA is acknowledging and PHANU {Simmaron} making such headway, I have to think it will improve. We have not forgotten you. We{fellow m.e. afflicteds} thank you, just read everyones posts
    . ....hope you see a brighter in this turn very soon, its hard to feel scared so much of the time

  19. I am scared of living right now too - living hurts too much in so many organ systems. My relapse came from going to the doctor - that is also a joke on us!!

  20. It breaks my heart Lee Lee - now, before and I'm sure in the future. You don't deserve it - nobody does, of course. I wish I could take some of the pain away. I wish I was there to help take care of some of the practical things at least. At least know that there are many people in this world who love you.

  21. Anger, such a powerful emotion. Power is what you need right now. Don't let 'them' win LeeLee. Whoever 'them' are., they don't deserve to win. The deserve to be looked in the face one day and you triumphantly screaming 'I won fuckers! I won!'.

  22. You are not alone, Lee Lee: there are a lot of people who quietly care for you. Let this knowledge bring you strength, and have Faith that this difficult episode in your life will soon be behind you. All will be well.

  23. You are one eloquent and well-spoken person. Scared of living, not dying -- yep that is where we are at.

    I am with you and sending lots of love.

    I don't mean to be anonymous but my brain can't figure out how to sign in...or something....