It can be lonely being sick all the time.

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tjbab4
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/26/2009 9:04 PM (GMT -7)   
sad 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.

LVangel
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/26/2009 10:53 PM (GMT -7)   
I get, I up awake while everyone in my house sleeps.. I stay home all day hurting not be able to do anything, just waiting for them to come home, so I can at least be with people. Then when they finally come home all they want to do is watch TV and rest, not even talk. So I feel as if I'm the only one who cry's and feels bad about this. Maybe this doesn't help because I am not yet past where you are. All I know is we must keep trying to make things better for our selfs and I am there for you. You do not cry alone here.

TreeBo
Regular Member


Date Joined Aug 2009
Total Posts : 114
   Posted 10/27/2009 3:45 AM (GMT -7)   
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.
Treebo.


Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 10/27/2009 5:03 AM (GMT -7)   
Treebo I like the idea of taking pics as you walk and downloading them. And I agree that we are entering a new stage of our lives.

There are meals on wheels for those who cant feed themselves. and buses who come to get those who can no longer drive. Why is there no program to find meaningful employment for those of us who can still work but can no longer stand or sit for long periods of time?? If only there was a program like that. I'm sure there are employers who need us in some fashion and who could put meaning back into our lives but they just don't know.

My family is tired of hearing about my aches and pains. Of course they are. They can't help and feel frustrated so I no longer tell them. I might say I'm not feeling well today and let it go at that. At least they are educated now to the point where they understand that it is not all in my head like they thought at one time. Could this be a part of your problem Tjbab4?? Do you still feel like they don't believe you are truly unwell?

All of us need to find a way to feel useful. My new years resolution this year was to get well. I found I am not going to be "well" but at least I know what is wrong and can find a way to handle it. Next year my resolution is to find a way to be useful.

HUgs to you hon and hope your life and pain works out better.

Jhemi

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 10/27/2009 3:01 PM (GMT -7)   

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



Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 10/27/2009 4:04:04 PM (GMT-6)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/27/2009 5:51 PM (GMT -7)   
Hi Tjbab and welcome. You know I believe we have to get down right angry with fibro before we can move on and make a new life for ourselves, at least that is what it has taken for me. After a tragic loss I spent 2 1/2 yrs in a funk not even really trying to live a normal life, whatever that is for a fibromite. Recently I just had enough of looking at my dirty house thinking I can't do anything about it, I use to be a perfectionist when it came to my house, and since I've always been a stubborn and determined person decided fibro or not I'm going to do all that I can. I think we have had 40 days and nights of rain here and I have really been hurting but I keep at it everyday and although I do in a week what I use to do in a day I still feel good that I'm doing something that makes me happy. Yeah, for the first time since getting fibro I have had to resort to a little vicodin at times but I feel more normal now than I have in a long, long time pain and all.
 
I stopped thinking about having fibro and started thinking about living. I hope you can get there soon too.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/27/2009 10:30 PM (GMT -7)   
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
Children will not remember you for the material things you provided but for the feeling that you cherished them.
Richard L. Evans

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


tjbab4
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/27/2009 10:31 PM (GMT -7)   
Thanks for all the stay positive comments. I have been living with this for 15 or more years . I am tolerant of it 80 % of the time. It's that 20 % where I get overwhelmed with it. Mine has steadily gotten worse over time. I do not get breaks between pain. I hurt 24-7. To different degrees. I try to stay positive and live my life to the fullest, but there are just times when I can't. I do have to miss many many things because of this stupid illness. I do feel like the people in my life should step up and be there more for me. I should just be able to get some emotional support without having to cry or feel like I am begging for it. I push my self most everyday, I do. If I didn't I would be completely bedridden. No I don't think my family gets it. Its like depression, unless they have went through it then they probably wont get it. As for being angry. I do go through angry bouts as well. This disease has taken allot from me. It almost cost me my marriage, It stole my career which I loved. I just sometimes feel like I cant do this anymore. I get so physically and mentally exhausted with this illness. I know coping with this disease is all about learning my limitations with it, and not pushing it. I have to budget my energy very carefully. It is a very hard balance to find. So for the most part I can I take it, but when I can't I would just like someone to help pick me up. I'm sorry that I am not Mary Sunshine right now. I just really needed a ear to vent.

tjbab4
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/27/2009 10:56 PM (GMT -7)   
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.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 10/28/2009 12:14 PM (GMT -7)   
TJ, have you read the Fibro 101 thread yet...the first thread on the forum?  There are some links there that you could print out and show your family and friends to help explain what you are going through.  Links #5, #6, and #15 could really help you, I think, explain this illness.  If nothing else, you will know you tried your best. 
 
I do hope you try to exercise, though.  I know when you hurt so much you really don't want to move at all and your depression doesn't help one little bit, either.  But, perhaps you can get started again.  You might try the malic acid/magnesium supplements and vitamin D3, too.  (There are links about them in the Fibro 101 thread.)  These have helped many with their pain and fatigue.  You never know what will be good for you and, if you find the right combination and keep up the exercising, who knows?  You just might be able to jumpstart your career again.  None of us knows what the future holds for us so keep on trying.  We are here for you.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 10/29/2009 3:47 AM (GMT -7)   
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.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/29/2009 6:00 AM (GMT -7)   
Littleneck, I have lost touch with so many people since all this started about 11 yrs ago besides my family there are very friends I keep in touch with. But there are many people out there like ourselves that can't always be the life of the party but still need a friend. I have a new neighbor that I haven't had the time to get to know that well that has Parkinson's, she is probably around my age.
 
Tell fibro where to go, you have a life to live. smilewinkgrin
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


need some zs
Regular Member


Date Joined Nov 2006
Total Posts : 143
   Posted 10/29/2009 8:53 AM (GMT -7)   
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.

Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 10/30/2009 1:00 AM (GMT -7)   
I told fibro where to go today. It felt pretty good. :)

SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 10/30/2009 2:27 AM (GMT -7)   
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. 

Thanks!
   Trish
 
Dx'd with Fibromyalgia, High Blood Pressure, TMJ & Migraines
Zoloft (200mg/day), Atenolol (50mg/day), Lyrica (150mgs- 3 times/day), Yasmin (continuously), Vicodin (1000mg as needed).  Oh and a LOVELY retainer for the TMJ! 
 


jamies.mom
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 10/30/2009 8:53 AM (GMT -7)   
I was down for a long time, feeling in pain and tired, and not knowing why. The worst part was hubby saying there was nothing wrong with me. If I was going to town to get groceries - an hour away and a big tiring ordeal for m - he would hand me a list of things to get at a dozen different places. I would be near tears telling him I just couldn't and he would tell me that was ridiculous. Now that I have a diagnosis, it has helped him to understand a bit, but he still doesn't completely get it yet.
The diagnosis did two things for me: One, it made me feel worse, because it meant that there would be no quick fix that I had been hoping for.
Two, it gave me "permission" to take time from work, to rest and think about what I wanted to do with the rest of my life. Fibro fog lost me my last job, and every job I have tried to get has for some reason or another slipped away, and I like to think that someone up there loves me and is making sure I have all the time I need to make a new life I can be happy with. I have always thought of becoming a writer, and I am starting to think that now might be a good time to give it a shot.
As down as you can be at times, please try very hard not to look at the things you can't do, and try to look at all the things you can do with fibro. Maybe you will discover a hidden talent, or a new hobby, who knows. YOur post made me cry - I would love to know that you did not let it get you down too far!
fibromyalgia, Irritable Bowel, restless legs, polycystic ovarian syndrome.


MWM
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/1/2009 8:19 PM (GMT -7)   
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?!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40567
   Posted 11/1/2009 8:56 PM (GMT -7)   
Hi Tjbab4,

I spent two years in bed with fibromyalgia. I litterally listened to life go by through the bedroom window. I lost a floral business and plant nursery.

Thanks to good doctor's and medications, I am functioning now. I am working part time. Seeing many people that I haven't seen for years. Kind of making up for lost time. I also use malic acid/magnesium and vitamin D3. They both help a lot. I take anti depressants, mood stabilzers, pain meds and adderall. That has really helped me along the way to be in a better place. I hope that you can find what works for you.

I am gald that you started this thread.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 11/1/2009 8:58 PM (GMT -7)   
I don't know about that but I sure love my fibro family :)

fibro ?
Regular Member


Date Joined Nov 2009
Total Posts : 76
   Posted 11/11/2009 9:48 AM (GMT -7)   
If what I hae is truely fibro,, I mourn for my old life,, my friends used to call me a river otter,, neer stopping,, always on hte move,, now I can barely make it up and down the steps,, my family is tried of the complaining,, my friends have deserted me, and here I am thinking how in hte world am I going to make it to work tomorrow,, een after I work, I come home,, to tired to even eat, and just go to bed,, its a vicious cycle

Libby08
Regular Member


Date Joined Oct 2009
Total Posts : 434
   Posted 11/12/2009 10:31 AM (GMT -7)   
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.
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