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View Full Version : Do you have a love/hate relationship with Facebook bc of Lupus?



Islablue
11-27-2010, 10:51 AM
I do. It's because 99% of my friends on FB do not have Lupus. Actually, they don't have any disease. I feel as if I have so many limitations due to Lupus that reading about everyone's awesome job, limitless fertility, vacations, & physical activities is depressing to me. What is my true status?? .. Whitney Cook is sitting on the couch in pain? Whitney Cook has red and swollen knees. Whitney Cook is pretending to have a life that doesn't revolve around Lupus restrictions? Whitney Cook is jealous of you. Then there's the guilt that I shouldn't be so negative or focus on what I cannot do. You know the guilt Im' referring to. The inner conversation that takes place when you find yourself counting your curses instead of your blessings.. Anyone feel this way?

tgal
11-27-2010, 11:16 AM
Hi Blue,

I can understand exactly what you are saying and I know that would be easy to do but I don't allow myself to do that. When I was in in my early teens I had an eating disorder which turned into a drug addiction (could use some kind of speed and not want to eat so I could still stay thin). I cleaned up at 21 and several years later I worked in a drug rehab unit. The most important thing I learned was to "get out of myself" meaning to focus on others. Help other people. Listen to other people. Talk to other people. As an addict my natural instinct was be selfish and focus on what I felt, what I wanted, what I needed, what I desired etc. The only way to overcome that is to keep the focus elsewhere. I have found that having that experience in my life has helped me in this part of my life.

Don't get me wrong I pay attention to what I need and I have down times but I do my best not to "live" in my sadness/anger/pain. It is one of the reasons I appreciate this board so much. Here I can get out of myself and help others which helps me not be so self involved. It doesn't take the pain away. It doesn't stop the rashes, allow me to drive or stop the seizures but it does allow me to think of people besides myself. FB does that same thing. It allows me to share in the joys of others from the couch that I am on because my knees hurt so bad that I can't walk (or whatever the reason is that day). It allows me to have communication with friends about things non lupus related which is something that I need from time to time.

The internet has allowed me to have a life from my home which I think is a huge bonus. I can't imagine having this illness before the net. I don't want to even think about how isolated I would have been

Hope you feel better soon. Hugs to you my friend

Islablue
11-27-2010, 11:43 AM
I think it's hard being so young and watching people do all the things that were my dreams too. Having a baby, finishing school, having a job they like, traveling, staying fit.. etc. I got married at 23 so I have a great hubby and I love him dearly. I've had miscarriage after miscarriage and I see people having children and it comes to a point when every one of my friends is pregnant or just had a baby. I am happy for them, but if I'm honest at the end of the day it hurts so bad. I end up crying a lot. Some people say.. well i can't have kids so I will focus on my career, or school, or traveling, or other goals. Well I can't do any of those things right now and we are hanging on by a thread to everything we own because we have no money. I just had to pretend I'm not home because they want to inspect our property to foreclose on it. I guess I'm just a Bitter Betty.

tgal
11-27-2010, 12:41 PM
I know it is hard Blue! So much of our life is taken away because of this. I do understand. I had several miscarriages before finally being able to carry my daughter (then a hysterectomy when she was 8 months old). We have lost our house, my car, we no longer have cable because I am the sole bread winner and I can't work. It is simply back to the basics. I promise I do understand and there are times it is so depressing I just want to hide under the covers.

It is OK to get mad. It is OK to cry. It is OK to yell! You need to get those emotions out because if you don't they will eat away at you. Try to find a way to let them out and then find something else to focus on. I know it is hard when all you want to do shoot the people that have your old life or the life you wish you had but I promise it will help. When you need a place to scream and yell... just post away because that is what we are here for! We are your venting place so that (hopefully) you can have a bit more joy in your home (at least that is the hope. Not sure my daughter would agree Lol)

Linda From Australia
11-27-2010, 05:36 PM
Yes I agree, life is so tough for you at the moment Whitney. I bet it really gets you mad when FB friends write in their status that they have a headache, or have a cold, or tired etc.... They really don't know what it is like to be really sick and heaps of their 'virtual' friends give them heaps of sympathy for just common ailments that they will get over very soon.

I recall that you are a crafty person, is that right? (Forgive me if I have mixed you up with someone else) Have you thought about posting about what crafts you have made, and how that makes you feel. Or even discussing the new plants and flowers you see blooming that makes you feel fresh. That way people will see that you do have a life and appreciate it. They will more likely give you positive comments instead of saying, "oh poor you, it must be hard being sick, oh by the way did I tell you that I am fantastic and have a fantastic life"

I really don't know what to say to make you feel better, but when life is hard, you seem to notice the big things that interrupt your life, and sometimes it is the small things that you notice that you appreciate. Rest up (like I should know that rest is all you feel you seem to be doing now days) and stop to smell the roses.

tgal
11-27-2010, 06:13 PM
Linda said it so perfectly! That is exactly what I was trying to get at she simply stated it much better!

Linda From Australia
11-27-2010, 06:16 PM
Thanks tgal, now the next post I wrote to Terri was gobbly gook. I am glad someone could understand this post

Saysusie
11-27-2010, 07:19 PM
Tgal & Linda; You both were very on-point with your advice and I think that you both said it wonderfully. :-)
Like you, being here and on FB helping others with this disease brings me peace and comfort and takes my mind away from my aches, pains, limitations, and even prevents me from falling into deep depression. That is not to say that I don't get depressed because I do (I think that we all do, from time to time), but helping others keeps me from transgressing into that deep, dark abyss of unhappiness. Also, knowing that there are so many here at WHL, like the two of you, who genuinely care brings tears to my eyes. I am honored to know the members that we have here.

Islablue; What you are feeling is genuine and there is nothing wrong with you because you have these feelings. Do not beat yourself up or feel guilty because you feel anger or jealousy or because you miss the life you once had and can no longer have. That is perfectly natural that you feel this way. But it is also important not to lose sight of what you do have, what you can do, and what your heart truly feels. This is the place to come to scream and yell about your losses. This is also the place to come to learn how much you are valued, how much you do have to offer and how wonderful your life can truly be in so many other ways! I wish you the very best

Peace and Blessings
Namaste
Saysusie

Peace and Blessings
Namaste
Saysusie

Islablue
11-27-2010, 07:39 PM
Thanks so much for a fresh perspective on this. Believe it or not, I've only posted about not feeling well maybe three times since I got FB a few years ago. I just hate complaining to people about it because I don't like them to think I am an attention seeker. I don't care if I have anything to post about. . I just hate how I'm always so jealous. That's why I just contemplated cancelling my account if I cannot move on from being so jealous and upset. Reading yalls comments reminded me of how I used to be. Very giving and always happy for people. I am still giving, but I have let my sadness consume me most days. I gotta smell those roses! So I'm really going to try and focus on the positive.
p.s. I do have a facebook for some of my crafts .. if you search Deep South Charms that is what I've been working on lately.

Linda From Australia
11-27-2010, 08:58 PM
There is nothing wrong with feeling jealous. In fact jealousy is often the catalyst that gets us off our backsides and do something about something we want. IF we don't have enough money to buy or have the things other people do, there are things we can do to try and bridge the gap. Like continuing to study to get a better job. Or make wiser choices with how we spend our money. Or get a second job, or another job (which is only practical when we are healthy)

Sometimes when I visit people who have expensive, immaculate, magazine style homes, I get jealous and want the same, and think "where do they get all that money from?" I know there is no way I can afford the house or the things in it, so I go home and clean my house, and try to have it a 'little' bit better.

I also have been in a situation where I lost my first baby through an eptopic pregnancy, and waited and waited, then had operations and waited still more to fall pregnant. When my friends got pregnant and had their babies, outwardly I was pleased and excited, but inwardly I screamed to God that it was not fair!!!! I hated looking at babies, seeing pregnant women, and all those pathetic baby clothes hanging in the shop windows. What made it even worse was when people happily said they fell pregnant by accident. And then the worse feeling of all was (excuse my description) the beautiful act of making love just became sex in order to fall pregnant. Then the uncomfortable time of laying on my back to make sure things happened, when all I wanted to do was to roll over on my side or tummy to fall asleep. Every period was an agony of physical and emotional pain.

Again I say, there is noting wrong with feeling jealousy, resentment, and anger. But you have to be very careful what you do with those feelings. Remember you are in control of your feelings, make sure your feelings do not control you. Keep posting how you feel, and most importantly, what you have been doing to help you cope with your feelings.

But then it is a different story if you feel you are suffering depression, you do need expert help there, and try not to think that you can cope with it all by being a positive person. That will just make everythinhg worse than before.

teresaa40
11-28-2010, 08:30 PM
I actually am facebook friends with my local Lupus Foundation chapter. It kind of "outed" me publicly when I had never openly said the words, I have Lupus, to anyone before. I agree, we feel like whiners and as if our FB friends really don't want to hear about it. So, I use FB just for what it is, a social network. I socialize there, in ways I cannot anywhere else. If Im sick, I just don't log in. If I am lying around with no energy to do anything else, I log on and play, chat, check out other people's goings ons. I even found some long lost relatives and friends through being on FB. It has its good and its bad sides. If you're looking for someone on FB to chat with that is perfectly fine with hearing about the reality of what is our life with Lupus, feel free to look me up and friend me.

You can find me by my email hollyjuno9@gmail.com

rob
11-28-2010, 09:50 PM
Hi Islablue,

I've not spent much time on FB, and I'm not a member there. However, I do belong to a couple of other sites where day to day happenings are talked about, including people who mention various health problems as a matter of discussion. Most problems are minor, some are not.

Personally, as a rule, I don't mention SLE or MS in these places, unless someone specifically brings up the subject, which is rare for MS, and almost never for Lupus. For me, these are not "safe" places to talk about either disease. By safe, I mean places like here, and other Lupus and AI disorder support sites where you can speak to others who are in the same boat as you. On most of the general discussion sites and forums, too many people are just too wrapped up in themselves or just plain ignorant of the facts, and some of them, say stupid things.

I in turn, will say some not so stupid, but arguably mean hearted things in return, causing the sort of nasty exchange that I strive to prevent from happening here. So, I just avoid the situation completely, and only talk of autoimmune disorders in the places where I know that I will not be met with silly, ignorant responses.

That isn't to say that you should not talk to others who want to know more about SLE and other AI disorders. Increasing awareness is a very, very good thing, but I choose to be somewhat selective in whom I talk to about the subject.

Rob

magistramarla
11-28-2010, 10:09 PM
I've had a much different experience on FB. I got on it to keep up with my kids and grandkids, who all live in different states. Before i could even "friend" my own kids, I was "found" by old friends from my high school days, and by a lot of my former students from my teaching days.
Right away, I linked on my page to The Lupus Foundation and The Sjogren's Foundation, making note that I have been diagnosed with both.
Several of my old HS friends, some of whom are battling breast cancer and other things, immediately wanted to know more.
Some of my students sent messages about finally understanding how much pain I was in while teaching. One sweetheart who attends the AF Academy as a pre-med student wanted still more information on everything that I have been diagnosed with. She wants to research AI diseases, and hopes to be the med student who comes up with a cure, in my honor!
I've always been very open and honest with everyone about what I have going on, and most of my friends, young and old, have been very understanding.
Hugs,
Marla

SandyR
11-29-2010, 08:09 AM
I'm on FB and I also "like" several pages that are disease related, but in the 3 years I've been on there only 1 person has ever asked me about it and that person turned out to also have AI issues. I don't talk about how I feel specifically on my page other than an occasional "Sandy has achy joints today" or "Sandy's joints can predict the weather better than her local weatherman". That kind of thing. Mostly for me, I feel like my health is a private matter. I only share what I really what people to know. I don't even have my real last name set up as my user name. I'm just very protective of my privacy and also of the privacy of the people I am friends with on there.

Islablue
11-29-2010, 11:30 AM
I also have been in a situation where I lost my first baby through an eptopic pregnancy, and waited and waited, then had operations and waited still more to fall pregnant. When my friends got pregnant and had their babies, outwardly I was pleased and excited, but inwardly I screamed to God that it was not fair!!!! I hated looking at babies, seeing pregnant women, and all those pathetic baby clothes hanging in the shop windows. What made it even worse was when people happily said they fell pregnant by accident. And then the worse feeling of all was (excuse my description) the beautiful act of making love just became sex in order to fall pregnant. Then the uncomfortable time of laying on my back to make sure things happened, when all I wanted to do was to roll over on my side or tummy to fall asleep. Every period was an agony of physical and emotional pain. . . . .

But then it is a different story if you feel you are suffering depression, you do need expert help there, and try not to think that you can cope with it all by being a positive person. That will just make everythinhg worse than before.

Hey Linda, I'm sorry to hear about your ectopic. I know that's hard. When it comes to that I had been in group counseling/christian setting for about a year and one on one counseling for about 6 months prior to moving to a group setting. You reminded me of it and how I need to put into play the things I learned there. I think the decision to get that help was the hardest yet yielded the most rewarding results. There's not a doubt to me that there are days when I'm depressed. I'm on Lexapro and have considered calling my counselor up when I get really upset. Maybe that's something I will do. Getting to talk about the feelings to yall has been a huge help for me. I woke up yesterday and went and hung out with my little niece all day. I'm really going to try to make a genuine attempt (nothing forced or fake) to step away from myself. That's what I learned in counseling as well and I need to really work on it. I've considered counseling for Lupus and how to handle it. There's definitely NOT a handbook that comes with your diagnosis that can encompass every feeling we experience, is there? haha.
Thanks to all who have posted in this thread and given me a fresh perspective on things. You are all so sweet and thoughtful and I hope to be an encouragement to you in your time of need ((((((hugs)))))))

Islablue
11-29-2010, 11:33 AM
Oh and I'm a member of a Lupus group on FB too, so I may see some of you on there!

tgal
11-29-2010, 12:47 PM
I am so glad you spent the day with your niece! I know it won't make everything perfect but hopefully it will help! I am so proud of you for putting out the effort! You are correct there is no handbook and that is why we are all here for each other.

Good job girl!!!