Hide and Seek

I’ve completely lost all of my motivation over the past three weeks. I feel stuck in my head and worse yet, stuck in this broken body. I’ve accomplished not much of anything and anything that did get done came with a heavy price to pay afterwards. I’ve been doing a lot of reading up on Fibromialgia and one of the things I see most frequently in what people are saying is “moderation is everything.”  It’s hard knowing when to stop myself if I am having a “good” day. I find that I push and push so hard to get everything I can accomplished during the few hours a week my pain is barable and my fatigue isn’t keeping me chained to the couch, the floor or my bed. Getting a load or two of wash done, a bit of dishes cleand and cooking a minimal meal is a fantastic day for me.

I am angry with myself for all of the years when I didn’t do something simply because I didn’t “feel like it.” Oh how I beat myself up now for thse memories. My aunt told me that I can’t do that though. That was then and this is now. I need to pace myself and feel proud of anything I can do now. Yay, I made it upstairs without wanting to collapse or only woke up once during the night, such a great thing. My pain level is only a 6 today, what a great accomplishment. I only rested for 8 hours today, instead of the usual 15, hooray!

This sucks.

My life as I knew it is just that… How I knew it.

Today at physical therapy my therapists stood close by my back and side as I for the first time in 3 months took the steps as a normal person would, one foot for each step. This was a huge thing for me, a great accomplishment. I did it, we went all the way up and all the way down. It felt foregin to me, as if I had never done anything like it before. The brain is such a funny thing. I’ve known how to climb stairs since I was able to walk. How could I have forgotten? Each step I had to take today was well thought out. I had to tell my brain what to do. I suppose I should feel proud. I am not. I am angry. I am sad.

My sister told me last week that she didn’t think I was handeling all of this very good. I was thrown back and hurt by her words. I replied back that I didn’t know what she meant and she specified that me being sad and angry isn’t helping me. I told her anyone who had constant pain for a solid 3 months would react the same way. She said she wasn’t critisizing me. I know that she wasn’t and didn’t mean to be hurtful. I know she wasn’t.

Aside from knowing your limits the very best piece of advice I read on one of the many websites I’ve been getting familiar with is “don’t complain to people. It’s exhauting to listen to and pushes people away.” This is something that is going to take a lot of disipline and effort on my part. It’s hard not to complain about this, the pain consumes me. The fear and worry that I really will feel this way forever consumes me. I’m sure it would do the same to anyone.

I’m going to focus on not complaining to the few people I have to talk to in my life though. I am going to try to be positive and hopeful that somehow this will all be okay. I think I might start another blog just to vent about this crap. Maybe it will help someone who is in the same shoes as me. Maybe it will help me.

I am praying for a good day this week. I still have cookies to bake and send out, I want to finish the laundry my daughter started and I want to feel like I have a purpose in this life so starting the new blog would be a positive thing to do, too. I don’t want to give up on my list but I feel like I already have. I haven’t written, I haven’t read my subscriptions and I haven’t even picked up my camera in weeks.  I’ve lost my mind. I need to somehow find it.

Anyway, I’m sorry if I’ve let anyone down by not writing or keeping up with your lives. Tonight I plan to catch up with all of you and get back into the swing of things. I’ve been in a very dark and lonely place and if I learned only a few things this week, one thing I’ve certainly learned that I’ve missed blogging. And baking. And walking. And the old me….

I’m hopeful. I promise.

ps I didn’t edit this so I’m sorry if it’s a mess, I just wanted to vent and ramble and write.

 

 

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18 thoughts on “Hide and Seek

  1. Thanks for sharing, it must have taken a lot of courage to post something this intimate and personal. I did not know anything about this dis-ease before, but now I feel smarter. I’m sorry to hear it is not curable and hard to diagnose. I hope you will feel stronger soon and learn to deal with your illness in a more productive way which will not make you feel as down.

    By the way, I consider writing your thoughts and feelings on this matter a really good idea! I think a lot of people would be interested to hear a more personal perspective on this topic and I m sure you would help others affected by the disease out, too. If you don’t want to do blogging, consider writing everything in a journal. It might be therapeutic, since you like to write!

    Can’t wait to hear from a more cheerful Ginger, soon! Hugs from here!

    1. Thanks Laura, I am trying to not feel so down about this but it’s hard to be positive right now. I know being positive is what is going to get me through it though. I don’t know much about this disease and it is hard to find people who really talk about it on a personal level. I’ve only found one other blogger so far but I’m sure there are more of us out there. If there aren’t I hope that maybe I’ll be able to make some sence out of this ugly curse for someone and encourage others to talk about what they are going through.

  2. Ginger, I am sorry you are not well. Most of the time your writing doesn’t give it away. Our pastor at our old church in California was suddenly struck with fibromialgia and it was very difficult for him to function. He had to step down as pastor and it really hurt for all of us. It is a hard disease to understand, but very real. I am glad you shared your feelings.
    Take the slow but steady approach, save the rest for tomorrow, and enjoy your accomplishments!
    Lynda

    1. Thanks Lynda, it means a lot when people understand what this disease can do to people. I’m very sorry to hear about your Pastor, I hope he had found some relief and effective ways to control the pain. I really wanted to stay positive here but after a whole week passed and I had nothing to write I figured I might feel better to get it out. Thanks for your kind words, they mean a lot.

  3. Ginger–so glad you posted again. I want to assure you that you are not alone in this disease, even though you may feel that you are; I know on a first-hand basis how debilitating fibromialgia can be, but I also want to let you know that you will one day likely begin to feel better. Maybe only a little bit better, but better none-the-less. And the good days will eventually overtake the bad ones.
    Keep strong in your head and your heart–sometimes there’s nothing we can do about the bodies that fail us, so heads and hearts are all we can control.
    I could add so much more to this comment, but will end for now by just saying that I am thinking of you tonight. Take care.
    Sylvia

    1. Sylvia, thank you for commenting, I hope that you are not suffering from this as well. If you are I hope that you have gotten it under control and could maybe share your experience with me if you were up to it. In the next few days I hope to get a new blog going so this one won’t be bogged down with sadness. I really do hope you and your loved ones are well. My aunt suffers from this as well and speaking with her the other day made it very real to me. I’m going to be positive, she told me of someone who’s symptoms had disappeared after some years. Im sure they had to be positive and worked hard to manage the pain. If the pain never stops, it’s best I learn to control what I can (mind and heart) now to make my future a bit brighter. The sooner the better right? Thanks again for your words. Not feeling alone is a wonderful feeling.

  4. There you are; I was getting worried about you.
    I agree with the others; it takes a lot of courage to post something like this. I don’t have any experience with what you’re going through, but I think my Grandma would say, “Honey, you got to feel what you’re feeling so that when you’re done feeling it, you can tell the difference.”

    One of these days you’ll look back and say, “wow, that sucked. glad that’s over with.”

    You’re loved, girl. Don’t sweat the cookies or the stairs or the housework. …they’re all small stuff and there’s only one of YOU.

    xxoxooxoxoxoo

    1. Thanks Yerttle, I do hope you are right. I thought a lot about what your Grandma would say, and admit that at first I didn’t understand. I think I figured it out. Do you mean if I don’t recognize what I’m feeling now that I might not separate from it in the future? Thanks for your support. I’m really trying not to beat myself up over what I can’t do, it’s just so damn frustrating and depressing. There are so many things I’ve taken for granted in my life and so many simple things I just want to do right now. My list (the blog and the one in my head) is just staring at me, waiting and teasing me. It does suck I hope you are right that someday I can say it DID suck.

  5. Ginger I can’t express enough how pleased I was to see your comments and you’re post and see you back on you’re blog. Although I realise this is a painful time and such an intimate post is, in its way,so sad to read. I wish you well. I wish you a stronger and easier day. I wish you support and motivation. I think writing your feelings and pain would help so much. Unedited, open book and your own. I’m sure it will help, at least in the mind part- which is what makes you after all. I’m writing this on my phone so i’ll leave it there, I just wanted to send this asap with love and best wishes, and to say i’m very pleased your back x

  6. I, too, am glad to see you back on your blog. I’m sending lots of positive thoughts your way.

    I also love Yerttle’s Grandma’s saying, “Honey, you got to feel what you’re feeling so that when you’re done feeling it, you can tell the difference.”

    I don’t think you should feel at all guilty about feeling sad, angry, or complaining. We all have times in our lives where we need to feel those things. The important part is not staying in those places for too long. And I’m confident you’ll come out of it when you’re ready.

  7. I am sorry that you are in so much pain. I wish I could do something to make it better. I don’t think you have to worry about venting on your blog. This is a place where you should feel comfortable opening up and letting it all out. I am not sure how I feel about that advice- about not complaining to people. If people care about you, if they love you, then yes, it may be hard on them to hear (as no one wants to see you suffer) but they can take a little complaining, or discussion about your pain. I mean it’s not like they are the ones going through this- you are. and you have every right to be angry, pissed, and sad. I think it’s normal. Yes, maybe it doens’t help you but it’s normal. There are people out there who have accepted their circumstances but I am sure they were where you are at first. I don’t think you can have acceptance withouth denial first. For what it’s worth, I think you should feel exactly how you feel. I know I would.

  8. I think your reaction to the whole thing is quite normal (whatever normal is anyway). I cannot imagine going through the pain, fatigue and change in your body this has brought about. You have to deal with it in a way that helps you to process through it. If you need to talk or complain or cry or scream, etc then do just that. Only you know how you feel. Just remember you’re not alone. Hang in there hun! Praying for you!

  9. Well now, that was a powerful piece of writing. Just take one step at a time . My sister has a serious condition as well, a suppressed immune system thing (Myatheneasis gravis)…I didn’t spell it right….she found it quite difficult to alter her busy lifestyle. She had just over achieves too long and the body wore out. I think she is accepting it better and dealing with it better.
    I am currently reading a self help book about walking as I have issues like arthritis and poor circulation. You might enjoy the book too. It is called Healing Walks for Hard Times by Carolyn Scott Kortge. It is a quieting the mind kind of book which ulti mately leads to strength and healing. It seems to work! Thinking of you on your journey, one step at a time.

  10. I was really worried about you..I’m glad you wrote this and I encourage you to start the new blog and please provide the link for it because I want to follow that too…
    I am going through a horrible time in my life too and I am trying my best just to take it one day at a time..all I can say angel is..try to learn as much as you can know about this because knowledge will give you some power..you will know what to expect and what you can do about it..get in touch with people wo are going through it or have gone through it…
    when I feel like I hit rock bottom I try to remember times in my life when things were rough..really rough and how I managed to make it through…I tell myself that if I managed to make it through then I can do it now…and above all you have to learn to celebrate little vectories..
    When I had my daughter I went through a horrible post partum depression..if you were to ask me what you remember of that time..my answer would be…darkness…black was all I could see…life lost meaning..I cried for hours everyday..the way out was to celebrate baby steps..the first time I when out of the house and and bought a card for my mobile felt likea huge triumph..your trip up the stair reminded me of that..take it one baby step at a time and celebrate little trimuph..and sorry for the long comment

  11. Well, you can see here how cared for you are by your readers – and I hope to some degree you can consider them/us friends. So you are not alone as much as you may feel. ((gentlehugsforginger))

    1. I sure do feel lucky and the support from all of my blogging friends, Girly. I feel so lucky to have so many wonderful people who care. I know I don’t act strong everyday but having friends like you does bring me strength and many smiles in an otherwise hellish time.

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