Fed Up. Afraid.

Fed up.

Frustrated.

In so much pain it is almost impossible to concentrate.

Disclaimer: If you don’t want to read what will probably be somewhat of a downer then I suggest you don’t read this and wait till the next time I post something! It’s just that, this is my blog, my space to write, and today I’m struggling so I think I just need somewhere to be able to vent.

When you have a chronic condition like mine, one with no cure, not even an exact treatment, one that even doctors don’t quite understand, it is difficult to explain it to other people. I mean who would want to sit and listen to what it’s like to no longer remember what life without some kind of pain was like? Who could be expected to able to understand that on one day my energy levels might be at 50% and I can actually leave the house and do something I enjoy but the next they might be close to zero and I can’t do much but lie in bed for absolutely no explainable reason? Who could actually be expected to be prepared to be there through all of the lows?

When I was in my first year of university I wrote a post on what it means to suffer from fibromyalgia. Things go up and down but nothing has changed, not really.

I have to admit that I’m afraid. I’m afraid of being taken seriously by people who can’t, and sometimes refuse to, understand. I’m afraid that going to see a doctor and expressing just how bad things can be will have them turn to the same old easy option of deciding that if I’m struggling I must be depressed because of course it couldn’t possibly be completely normal to struggle when your body feels like it has given up on you. I’m afraid that this is it, for the rest of my life. I’m afraid that many of my friends just don’t see what it really means so don’t really support me. And I think one of things I’m most afraid of right now, as I am single after so long, is that no man will ever be prepared to deal with this. How can I ever expect to meet someone and not frighten them away because they don’t want to face the side of me that isn’t all light and sunshine?

In life I can be cynical, my sense of humour can be rather dry and self-deprecating. But I am a positive, happy person. I believe in the power of the simple things. I believe that we should love freely, and as much as we can. I believe in making the most of what we have, and being grateful for everything we are given in life.

I want to live my own life as much as I can, I have goals, I put the energy I do have into projects and things which will make me happier. I give as much as I possibly have to the people that I care about, the people that I love. I just fear that sometimes, because no matter how I choose to live my fibromyalgia will always be a part of me, that I won’t be good enough. What if I’m not enough?

Sophie x

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5 comments

  1. Oh Sophie,

    Please accept this virtual hug from across the ocean. :)

    Someone was explaining to me yesterday how carefree my life is: I don’t have any dependents, I don’t have any bills, and I can do anything I want. It was fortunate that I didn’t have very much energy or else I would have strangled him. If only you knew, I kept thinking.

    It’s really hard Sophie. I have days just like you where I can’t see any good in the world and I feel full of despair. And I step into survival mode. A couple things help, but mostly it’s just really, really hard:
    1) Focus on yourself & what difference you make in the world: did you make someone smile today? (maybe the mailman when he delivered your mail or the neighbor who felt good-Samaritanly when he brought your groceries up to your apartment?) Were you able to be part of a good cause? Or make something (like a blog post or a plate of cookies) that encouraged someone else??? Were you a good listener today? (I have a lot of time lying in bed when I listen to friends freak out about breakups or try to hash out options, etc.)

    2) Psych: I’m in weekly psychotherapy & I see a psychiatrist at least once every 6-8 weeks. The therapist will tell you that she doesn’t actually accomplish anything during sessions, but I do have someone neutral to talk to AND I tell doctors that everything psychological is under control, so we have to check that off the list and move onto the next thing. You won’t believe the difference that makes.

    And, Sophie, in this post, I see courage and strength, integrity and maturity. Most young people are convinced that they are invincible, maybe even immortal. I sense that you’ve matured beyond that and have found the courage to admit to vulnerability and uncertainty. That’s big and that changes your outlook on your life and on the world. I sense sensitivity, too, awareness that not everyone is at that stage yet nor in a place where reading your post would be advisable. Your disclaimer shows an honesty and an incredible sense of care and friendship toward others even in a post about yourself. I see someone who is not afraid of the truth, someone who is sufficiently self-confident to admit her struggles to the world. I see someone beautiful and honest and good. And that’s who you really are Sophie. It makes you a friend to cling to and a person to fight alongside.

    Just because things feel incredibly hard and uncertain, just because your life doesn’t look outwardly appealing, doesn’t mean that we can’t see right through it all and see the beautiful, healthy woman growing underneath.

    Lots of love and standing right there with you sister,
    Abigail Cashelle

  2. You are enough. The fact that you are here, alive, thinking, being – an individual is enough.

    I can never understand what it’s like for you. To live your life knowing this isn’t going to go away and that the best you can hope for is periods of relative remission. But, there are people out there (men included) who do not see you as your illness. Yes, it’s a part of you, a part that has made you into the person you are. There are people you will meet and love who will accept you as a whole. Fibro included and they are the people that matter. They’re the people worth your effort and energy. Do not linger on people who give up on you, who belittle your illness, who don’t even try to understand. People aren’t so bad. Underneath it all, there are very good people out there. Think of them in your future not anyone else.

  3. Even though your post is more than a month ago, I’ll say this anyhow.
    I too, cannot completely understand your illness and its impact on your life, yet somehow I’m under the impression that I am experiencing very similar feelings.
    I’ve got spastic colon (or I just gave it that name, because “weak stomach” is not really defining the magnitude of its impact), and I’ve got a big anxiety to become ill, especially in social situations. I have been to doctors several time, receiving replies like “it is nothing, just stress” or just “here, this will help” while it does not really help. Even when I am feeling great and courageous, my stomach can still hurt, like I ate something wrong. I am pursuing dreams, which is turning out to be not what I was expecting. I live in Japan now, yet I cannot make any friends due to my fears and my body. It is like a vicious circle; the one triggers the other and it keeps amplifying each other. I even pushed away a girl who could have been more than a friend, unintentionally, due to my pain and whining. People don’t understand. Women have to be cute and gracious at all times, but men have to be strong and able to take suffering without whining at all times too. How can I make any friends or find a girl to love, like that?

    Doctors don’t really have a solution nor can they find anything. So they call it “just stress”. You cannot believe how tired I am of hearing this. It makes me even feel worthless, because it is like I am creating this situation myself, while there are people in the world who have real issues and real illnesses, like yourself.
    A few weeks ago, I heard that a colleague at my father’s office has the same symptoms, but not the anxiety. He suffers the same way, and he is also not understood by people and doctors. I felt some hope when I heard that. “Someone has it too. Someone is also suffering “. And yet he is able to earn money to support his wife and kids, and doing amazing work. But he also suffers. It gave me hope.

    Like I said, I cannot understand completely what you are going through, and our situations are not alike at all. Yet there are many parts in your post, feelings of fear and frustration that I can relate to. Some days are really just too much to handle, and my comfort zone shrinks again. Feelings of not being a capable person arises and the hope of better times disappear.
    Well, it looks like I used your blog to vent, I apologize for that. But I wanted to express some form of understanding to you. It gives a ray of hope when you know someone is suffering in similar ways, and is also trying his/her best to make something of it. (The hope relates to trying, not to the suffering part…). When I feel my mind is crumbling away under the negative feelings and pain, I try to think: the lord does not give you more than you can handle. You do not have to be religious or really believe it is true. But for me, sometimes it helped to not give in. And now I’ll end my rambling.

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