It can be lonely being sick all the time.

It can sure get lonely being sick all the time. I feel like I have ran out of words to describe how crappy I feel. Because my friends and family have heard them all. I don't get much of a reaction from anyone allot of the time. And that my friends, is VERY LONELY. I know my husband and family love me, I know that they care about me , but I think because I hurt all the time and feel like crap all the time that and they know its not gonna kill me, that its ok to ignore it or maybe not take it seriously enough. I know its kinda selfish on my part. I don't expect them to spend all their time thinking about how I feel. Thats not what I want. But hello, I'm sad, my whole body hurts, I have a migraine, I'm sensitive to light, to sound, to cold and many other things wrong with me. I take tons of medications. Still have not found that perfect wonder drug. But have tried them all. I am only 38 yrs old. I should be able to look forward to things, not worrying if I will be able to just function tomorrow. I feel like I am very pathetic. (yep, I'm already on Depression meds .) I have had allot change in my life the last 6 months. One of them being having to leave my job due to Fibro and Cfs. I worked for 16 yrs as a Hairdresser, a darn good one too. I had an amazing clientele, but something had to give and it could no longer be my family. I don't feel like anyone gets it. So I sit here while everyone is in bed sleeping comfortably, hoping someone get its, understands. Thanks for listening.

Hi TJ,

Lvangel is right you don't cry alone here. I know it feels like your life is ending, but it's not. You are about to start a new life. Yes this life will be very different from your old life, but it can be a very good life. I know it's hard to be positive when you're in pain and tired all the time. We all must learn how to cope in our own ways. I had a time in my life where i thought I would never be "normal " again, but now I feel like I am . I just had to redefine "normal". It's hard to start over and move on, especially if you loved everthing about your old life. Just look at it like an adventure. It's your time to decide what you want to do. You have the power to make things better for yourself. You can start by finding a hobby that will keep your mind busy during the day. This will also give you something to talk about with hubby. Try taking short walks during the day as well. At first you will really have to push past your pain, but I know you can do it! Walking will help stretch your muscles, and I find it also helps clear my mind of that yucky Fibro fog. I like to take short walks and take pics of interesting things I see. When I get back home I have pics to download, and organize. It gives me 2 things to do. Just think about what you like and go for it. Remember you are not alone. There is a whole family here of peple who understand you and are here to help, or just listen anytime you need us.

When I first came down with fibro, I talked about it a lot because it was such a change to my life.  Then it seemed that I talked about it too much and people were backing out of my life.  That's when I realized that talking about it didn't change the fact that I had this lousy illness so I needed to "create" a new life for myself.  My family and friends all knew what was going on, even though they might not understand it.  I figured it was frustrating for them, too, because they didn't know what they could do to make me feel better. 

I realized that it was my responsibility to try to make me feel better.  I started walking.  I couldn't go far, but every day I went a little further and I was starting to enjoy it.  I would look around as I was walking and see animals, insects, flowers, trees, children, puffy white clouds, beautiful landscaping that gave me ideas for my own yard.  As I walked I started thinking of all the blessings in my life.  They far outweighed the negative things.  By the time I got home, I would feel much better and actually have less pain and less fatigue.  I have since found out that my fatigue does get better with exercise.  Also, depression improves with exercise.  Exercise does help with pain and fatigue.  If your pain is better, you are feeling better and are a happier person which helps with the depression.  So, really do try to exercise daily.  It does help.

Laying and sitting too much will make you stiff as a board.  Standing and doing someone's hair would make you have more pain, too.  You do have to keep moving with this illness.

Find activities that you can enjoy to help take your mind off your pain.  For me it is genealogy.  I get so engrossed in doing that, that time flies and I have even forgotten to take my medication!  Some people here paint or draw, sew, do quilting, etc.  There are things you can do that will bring you joy.  That, too, helps with pain and depression. 

So, try to look forward to each new day with anticipation and hope.  We do have good days along with bad days but I try to have more good days in my life.  Thinking positively and not thinking about how I feel has helped me immensely.  Fibromyalgia is a fact of my life but I will not let it control me.  I find ways to work around my fibro to do the things I really want to do.  Because of this, I have had a full and enjoyable life in spite of fibro.  We can help you here.  Just ask questions and we can give some helpful tips to get you moving and enjoying life again.  AND, you are never alone.  We are here for you.  Hope to hear more from you soon.

Sherrine

Hi tjbab!

Your post brought tears because I know the feelings you talk about. I have had to give up a business and also my teaching career. It really hurts. Plus there are times when I feel like my family is avoiding me because they don't want to be around someone who, in their eyes, is 'sick'.

But one day I sat myself down and did some clear thinking. What is it I wanted and/or needed? Who was there standing by me? Who faded away? Who was always trying to fix what I had? We all know the questions. So I decided who mattered and who didn't. The ones nearest to me mattered and that mostly was my hubby. So I point blank asked...would you rather I not talk about my pain or would you prefer to know each day so you understand how I'm feeling. Either way was fine by me, I just needed to know. He said he'd rather know how I was feeling each day. That did make me feel like he cares but also I didn't take it to mean I should flood him with my aches and pains. It confirmed for me his love and caring and that's what I needed more than anything. So each day I do let him know but I don't dwell on it. It made a huge difference in my life. Oh, those others who didn't seem to care? I returned the favor. I can't afford to work on a relationship when I'm the only one caring. I've been much happier ever since.

Also, about your antidepressant...have you talked to your doctor about it's effectiveness? Most often those medications work well for about 2 years and then they seem to lose their effectiveness. Since there are so many to choose from you can switch to a different one and most often it will make a huge improvement in the depression. From how you are sounding right now I'm wondering if some of what you are feeling is depression that isn't being controlled. Just my opinion and if I'm way off base then please tell me.

Well, it's getting late and I'm about to try finding that dream land we all covet so much. Please stay in touch!
Chutzie

Thanks Chutzie.
We have played around with different Depression Medications. I am on a couple right now. We always seem to be changing or adding something to try to make things better. I also receive trigger point injections and cervical epiderals, to ease some of my pain. I tend to let it all get to me when I have an illness , like the flu or something like that. Or if I am stressed out. Any thing extra added is like the straw that broke the camels back. Depression and anxiety is always in the mix somewhere. I also have a therapist. I'm just struggling right now. Thats all.

This thread has really touched and affected me because I feel like I have lost my best friend due to this stupid fibro. We never see each other any more, never do the things we used to do because she is uncomfortable if she sees me in pain, and she has basically dropped me after being extremely close for ten years, thru her marriage and birth of two children. I am at that point of getting so mad at fibro that I am starting to fight to hold onto the important things in my life, appreciating every day for whatever beauty I can find in it. But I am so lonely sometimes. And that's when I come here.

Wow, this is so true. I have completely shut the "good" friends out of my life just to make room and have enough energy for my family and "great" friends. And I don't even see them that often. It is sad and lonely, but I still have hope. I won't give up.

Hi!  I just thought that I would put my 2 cents in too!  Fibro sucks.  All the meds, the weight gain (ugh that's the worst cuz it kills what little self esteem I have left) the feeling crappy but you don't look sick mentality.  Yuck, yuck, yuck.  I am 36 and want more!  But, if I am honest with myself, I have to figure out what that "more" is.  Right now, Fibro defines me.  And I am okay with this cause I am still finding my way.  I allow myself to be selfish.  People are selfish everyday for far way worse reasons!  Its not a bad thing to put me first.  I still love my friends and family as much as ever, its just that I give myself the same amount of attention.  Once I take care of myself I will be a better friend and family member. 

tjbab4~ Funny how one person's sentiments are felt by so many. The words could have come straight from my mouth too. Like you most of the time I can "ignore" it and get on with life, but this week has been bad and I feel more than a little sorry for myself.

I think of everything chronic pain has taken from me and it's heartbreaking. I started having trouble at the age of 7, gets worse every year. I did not finish traditional high school, I will not have biological children, I no longer work full time, I have given up trips and fun and whatever. Now I fear it is affecting my marriage more than I was expecting (hoping?).

I guess we're all allowed to feel like this at times... No words of wisdom from me I am afraid. But thanks for your post. Misery loves company right?!

I don't know about that but I sure love my fibro family :)

I don't have any "words of wisdom" for you but can share a bit of my experience with you.  I too have one very good friend and several good friends and friends that I rarely see or talk to due Fibro.  I have learned to hold on to the ones that stick around and just let go of the people who don't.  My husband thankfully understands (for the most part), but we have at times had problems over this.  I have a mother and sister who also understand what it's like to be chronically ill so I feel blessed there.  There are many days I don't even know how I make it through working a full day and by the time I do get home all I can do is lay down.  Usually on the good days I over do it and pay for it for several days.  You can't let this ruin you.  That's what I have made my mind up to do- not let this ruin me.  I have to take stock in the things I can do and do have control over and pray for the rest to be handled.  I try and keep an eye out for a support group in my area but so far haven't had any luck. This forum here has been a God send to me! I am in the North GA/Chattanooga TN are if anyone happens to know about a support group that I don't.  I also try to remind myself things could be worse and that it does make me realize that I am strong to be able to deal with this and still at least "keep up" with life.