since ive been sick ive been really irritable and distant. i dont like to be around anyone and i dont like people bothering me. lol i just stay to myself. i guess in a way i feel outcast because i cant do the things i used to do. and another reason is that i dont like people to see me sick. i know its an invisible disease but i cant hardly ever get out the bed. i cant ever hardly do my hair or even want to get dressed because my skin is so tender that i dont ever have on anthing decent.
people always want to come over or get me out the house but all i ever say is no! but im lonely tho... lol
I know exactly how you feel...I hope your days get better and you get to able to do more for yourself. It's okay to ask for help though, ya know at one point you have probably helped others out. Have a blessed day :)
Your not the only one, there are more of us out there. Just went to doc today for my depression with all the health issues. After 2 weeks of crying and not wanting to do anything I thought it was finally time to get more help. Have been dealing with my health for 13 years now. Hair is cut in cute pixie cut so it's easier to manage and looks good even when I can't fix it. Just take it one day at a time and if you ever need to talk send me a message. Sometimes easier to talk or text people then anything else. Together we can help. Wishing you better days!!!
Hi again Teesa
Pain grinds away at your tolerance level! What I am constantly reminding myself is that others are not reponsible for my pain. It just is. I use checks and balances within myself and am quick to apologize when i have over reacted. It’s hard when others are happy and obviously not experiencing the same difficulty with managing on a daily basis. I’ve found full length movies on you tube. Lol and like you I’ve watched even ones that don’t really interest me…distraction from my pain level. Take care, Lindy
and thanks for being there. i know exactly what you mean as well. i cant do anything.
abd my profile pic is from almost a year ago, right before the fibro hit me. im not able to do much to my hair anymore. in the pic i only twisted it up at night and untwist it in the morning to make it curly like that. but even doing that is too much now and even hurts at times. my scalp is sore..... i use to think it was nothing. oh how i took everything for granted. i apologize to my lord all the time about that
I totally understand. But it is very important to continue to TRY. It might be small things like sitting up in bed. Or moving to the couch for 0 mins. You need silky soft feeling clothes. Those maxi dresses are my saviors when I hurt to bad. Slip on one of those. It will help make you feel human again. Brush your hair if you can or put it in a bun. Invite some one over, have them bring coffee or something or if you can go meet them for a short outing. If they say anything about your former self just let them know that these are big steps for you now and to help you rejoice in those. You need to mentally praise yourself for each small step. Because they may have been small steps before but you need to change your thinking. They are large steps now and you deserve praise for each thing you accomplish. You base your praise on how bad you feel and what you could accomplish. But having said that, FM needs rest. Needs forgiveness. We must be able to not get up and rest our bodies and not feel guilt. Many of us take either anxiety medication or depression medication because this is a hard illness to not become depressed. We are here for you to talk to, share our issues and cheer you up when you need it. Remember the beautiful person you remember and miss, she is still there.
thanks for this. it almost brought me to tears that you can be so positive and caring. and its so true as well. great advice. im going to take it and try my best to be better. i swear this is the hardest things i ever been through in my life. i have to be strong in order to deal with this. we all must be.
i take meds to help with life and the pain. its still a challenge. we all know that. lol
thanks for taking the time out to give that awesome feedback and try to help me. it is much appreciated.
thanks lindy. thanks for taking the time out to give me some helpful advice. i like to try to watch movies to take my mind off this pain. if anyone is looking for me they can always find me in my bed watching movies. its something i do to try to not think about whats going on or to get my mind off of the pain im in. we have to be strong. i too have to remind myself that no one is responsible for this pain. an i try to redirect my anger.
Hi again, sore scalp is something others have posted about here. I suffer this as well where even touching the tip of my hair feels like someone is pushing pins into my scalp. I’ve cut my hair really short and I spike it. Mostly what others say about it i that I never did things by half measure and they like it. All I do is put some hair paste on my hands and mess it. It holds all day but does mean I have to wash it daily and this means I have to shower daily so gives me incentive when I need it. Cheers, Lindy
I know Teesa, it's all part of it, but you're so young to be isolating yourself! I know you feel bad, but there must be some friends of yours that can come over who do not expect you to do gymnastics or go dancing all night! You deserve to have friends and have some kind of communication with the outside world besides Doctors and nurses! You have so much to offer the world!
Don’t feel bad but don’t be lonely either.If you have friends who do understand your condition ask them over.Or explain how much you can and can’t do.I am trying to get my meds adjusted to get out of the hopeless moods.
Joann
They all dont understand. My bff just begged me to workout the last couple days. She says thats all i need. Remind you ive been to the ER and everything this week. I can barely get dressed. I cannot exercise and i rather not go outside… guys have been begging to take me out. I’m scared to expose that i am sick. they don’t take it well. Especially at my age
Teesa , I so understand exactly what you are saying !!! And every response is so true , we have to be able to forgive ourself from the guilt … The guilt that we put on our selves because we can’t be exactly how we once were. I go through phases , sometimes I just want to be completely alone & I’m ok with that because Its exhausting to put on that front, then I feel lonely , but I know if I call & talk to friends or family they may ask me to do something and then I have to say no … Or maybe I can do a little something , but then they will expect I can do more… It’s a balancing act & I have just decided I’m not talking to anyone anymore about how I feel, because they either try to fix it , or they say something stupid like …oh I found the perfect job for you, or why can’t you go to the hockey game ??? Hello ??? Waking up from general anesthesia was the only time in two years I had a few moments of being pain free… What about that do you not understand ??
So I sit here alone because its just easier … And when I have a little energy I’ll do what I want , I choose now how I use my precious energy & I don’t feel guilty anymore …I allow myself that alone time, but we also have to push ourself to do things for ourself that will make us feel better, like something you know you will enjoy , maybe going to church, or taking a risk and schedule an outing.
I hate for anyone to see me sick, so when I’m having a bad flare I avoid everyone & even phone calls , sometimes I just run out of excuses … Lol
i do understand for sure !!!
Hugs & blessings
dee B
Teesa, it's been nearly 25 yrs since my 1st TBI, and sorry you are having to go through this. Hopefully you will be able to get this a medical person to assist you in your troubles. I too get lonely, my husband does not understand the complex nature of this diease. But it is one, just like cancer..or any other. We have to do what we can to assist us, cause the rest of the world does not understand. Short hair is good if that sensitizes you, mine is cut extremely short because of the sores places on my head. And many days I sit in a tank top and underwear, no bra, just panties..people know not to come without calling so I can put on a robe. Give yourself a break. I just wonder what some others would do in our shoes for just a day...Put that image in your mind, and laugh out loud...better than the crying we usually have to do. May God Bless you all.and keep you in His Hands. Have you or any of you tried the anti-inflammatory diet??
Oh yes Teesa, I know what you mean. I think many of us feel the way you described. It takes a lot of energy to have a shower and when that is over I am wiped!! I know that I am not the only one who feels that way. Getting dressed up and doing your hair also wipes you out. Walking and standing just ignite all over pain so that when we get back home and unwind the pain won't let us sleep. For me sleep doesn't come til the next day! I live alone(with my three cats) so I don't do much talking, but when I am involved in conversation for an afternoon, I am wiped and I am losing my voice(laryngitis).
How my life has changed. I am a teacher(retired) so my work life has been full of talking and interacting with children which I loved!! But I couldn't handle it any more.
Teesa, it sounds like your lifestyle is changing. It is not a bit surprising to me. Perhaps the people around you just can't accept how your life is changing. Living with chronic pain and chronic fatigue plus other illnesses for many years just wears us down and now we must take care of ourselves. That is how I see it. My computer has become very important to me as it links me to many other people worldwide who are also dealing with fibromyalgia. These people understand and are supportive.
Yes,you have fibro,this is the most common complaint,isolation and lonely ness due to not being able to say when or even if you can get out,so after awhile they quit asking,and visiting,phoning,and they feel as if you are avoiding them,when you are not you are avoiding pain triggers,like getting in a car,where the vibrations can send you near out of your mind in pain and when you do get home from the Doctors (the only place you still go,trying to help)you are so worn out and exhasted that only a couple of hours away from home can leave you bedridden for days.Yes, this happens to most all of us,not always,but enough that it eventually leaves us not wanting to go anywhere. This is a great way to find others who are in the same boat and who do understand that the water from the shower is painful and getting in and out of the tub may be impossible because of pain ,you wouldn't be able to get back out alone.They understand not being understood, they believe when others think it can't be so ,you look fine,last week I saw you out doing stuff,what do you mean you can't now. We get it,cause we got it.Hope ,love and laughter sent your way.
