Tired.
Tired.Tired of trying to do what I feel like other people expect of me.Tired of trying to push through the pain. Mostly because other people don't understand how I feel. I wondered tonight if I need to try to somehow LOOK like I'm sick. I don't know exactly how to really look like I'm in pain when I'm in pain. I'm pretty used to trying to not look like I'm in pain.I try to stay quiet when I feel especially sick. It's just been tough lately trying to be as honest as possible with people and knowing that they can't possibly understand. I don't fault them. I just feel tired about it. Next week is my birthday.I decided today that I was not going to pretend to not be sick on my birthday. I need a day just to be sick. Do you know what I mean? Someone will probably decide they need to DO something. They don't understand that NOT doing something is exactly what I want to DO. I don't know how to say what I've said any differently to help them see what can't be seen. I feel badly for both of us. For them because I don't know how to help them understand, and for me because I often feel misunderstood. I'm just tired. I hurt. I think I would like a break from this. Some would look at my life and say that my life is a break. haha. I guess if you were on the outside looking in it would appear to be an easy life considering I only have a comparatively small window of functioning during the day/evening. Is that easy? I don't know. How do I know what's going on in other people's heads or lives... I think of what I do that feels like such an accomplishment to me and how others expect me to keep going after I've done all I can. Other people can handle mornings. They have a full day. I don't have mornings, really. I'm either in bed, or if I'm up it's because I feel like I absolutely have to be up for something. I know I will pay for it later with increased body ache and fatigue. I try to explain to people but their world is the world at large and my small world doesn't fit into their vision. I try. But, I'm tired. It's my fault if I keep trying and trying without screaming at the world, "NO!" No guilt. No shame. No wounded pride. My honesty falters and I swallow the words: "No, I cannot do it. I cannot push anymore." It's not fair of me to expect people to see my illness and my efforts that feel gargantuous to me but are invisible to others. For now, I'm just tired of not being seen. I helped a woman at the store today who told me the doctor said she couldn't lift any more than ten pounds. I was proud of her for accepting my offer to help. I was proud of her for accepting her limitation. She scooted away on her scooter. I wonder what "ten pounds" really means to us who have a concealed illness. I wonder just how much it really weighs. carry on.
Replies
Hi Katy. First of all: BRAVO! Bravo for SPEAKING YOUR MIND AND HEART so candidly! I applaud you!
and second: {{{{{{{{{{{{Katy}}}}}}}}}}}}}} you need a hug girl!
I am here with you 1000%..and completely understand what you are saying and how you feel! So you are being heard and seen! at least by me!
It is a coincidence that you posted this because I have had you on my mind lately...and was going to write to you yesterday or today anyway and now you posted this and well, here I am.
You know, as for not being seen, or wanting a \"sign\" if you will saying you are ill and in pain...I wear a medical alert bracelet because I am supposed to for my Adrenal Insufficiency. However, I have found nobody in the mdeical field EVER asks me what it is for! HA! And I mean EMT\'s and doctors or nurses and i encounter many of them! Sometimes I think i continue to wear it as a sign to people that I am NOT a well person! That who they see TODAY is not who I was just a few years ago! Now that is candid for you! (This is funny: my boss, a doctor, touched it the other day and goes \"Is this new?\" like he thought it was a Christmas present or something! LOL I said \"What? My bling? No it is my medical alert bracelet!\" He knows my illnesses by the way but does not often ask me how I am...although this week on a day i was not feeling well he did ask..hmm)
I can relate to the small window of functioning as well. But I AM a morning person these days ( ever since my body started waking up at 3 Am, I think from being pushed up on high steroids back in October) and enjoy these quiet hours before I go to work. But I work 8-1 usually and by 11AM or a little later. like 1, I am done usually for the day. This week in particular I have come home and just slept on the sofa after work and then I go to bed between 7-8.
I know I personally am in a depression right now...so that does not help my mood or energy levels or desire to do anything else BUT sleep ( and eat lately).
You know, I put on make-up and do my hair and dress nicely for work and well...I still see an ill person in the mirror. I see what the steroids ( and aging and depression and the eye tumor etc etc) have done to my appearance and I get so depressed. Other people don\'t see all of this, well, one woman the other day did say to me \"You look like you don\'t feel well today\" so she knew! My coworker said \"I think you look great and I see you everyday!\" So one comment validated my feelings and the other made me feel better about my appearance!
I know this reply is disjointed and I am trying to comment on some of your comments so I apologize...hope you are following what I am trying to say!
as for \"paying for things later\" OMG! YES! Two weeks ago I had a GREAT Saturday! I felt good emotionally and physically and got a lot done and was so happy and \"planned\" on having a similar Sunday. well that plan was a bust. Not only was sunday horrible but so was Monday and I had to call in sick ( no pay) and see the doctor! It is like one step forward two or three steps back and I hate it. I do not often make plans anymore because I can not rely on feeling well enough to keep them.
And as for guilt and shame and other lovely thoughts and feelings..I have them almost daily. Sometimes I TRY to be kind to myself and just ACCEPT what my life is, but that is hard. Sometimes when I am laying on the sofa I just have to tell myself \"It is OK to rest\" UGH!
Speaking of acceptance, well, lately as i lay around not getting things done etc, I have been thinking about my life and how it has changed....and I have realized that I am grieving and probably have been for awhile now...and well, it sucks.
and well, here is another candid comment..I actually get jealous or envious of people who lead \"normal\" lives whatever that means. To me, getting to the groc store on the weekends is the highlight of my day sometimes! What the hell is that!
Ok, well, I apologize that this is so lengthy and thank you for reading it...I guess I just needed to read what you wrote and then tell you I KNOW HOW YOU FEEL!
There are two things I want to suggest you Google: one is the Spoon Theory by a woman who I think has Lupus...it is an interesting way of explaining to others how it is to live with a chronic illness.
The other is I think a blog or website called something like \"You don;t look sick\" or something like that ( my radiation doctor would say that to me!)They may be helpful for you to read!
Again, thanks for indulging me and reading this..
TRY to keep your spirits up when you can...I know how hard it is TRUST ME!
Oh and even though I don\'t know you THAT well, I think of you when I overeat now! LOL I DO! Because of your post that time! And lately, I think thanks to the steroids and the depression, I over eat A LOT! GRR! I am looking to food for comfort again and well, need to try and work on changing that! UGH! One step at a time!
so I am thinking of you and pulling for you! And am here if you need to vent, ok??!!!
And here is another hug {{{{{Katy}}}}}
Ruth
Wow, you have said this so very well. I wish I could find the words to say how much your journal posting has touched me. I could have written this myself. I have just applied for disability, and all the shame/guilt etc that comes with it, knowing how sick I am, but sure that I will be told that CFS is not disabling and I don\'t qualify. I don\'t look sick.........
Sorry, i\'m talking about me, when I really want to say I do so understand what you have written and thank you for sharing it. Your writing has just ....damn I can\'t find the words! well, it\'s very good and it helps me feel not so all alone. Not too eloquent but the best I can come up with. bigs hugs
d
yep, yep.
It\'s nice to know I\'m not alone. Thanks for sharing. You worded it well.
How much longer can I do this, eh? I wish I had an idea for you, then I\'d have one for myself.
I\'m sick and tired of being sick and tired, too, Katy. Maybe someday we will be treated with respect and compassion, but it sure ain\'t today...I can tell you that.
You hang on...we\'ll make it somehow.