Have you ever noticed how much we isolate ourselves with this crazy disease we call Lupus? I've been noticing lately that I'm spending a lot more time by myself because it is so hard for other people to relate to my situation and how I am feeling. This isn't their fault or mine, it's just the way things are sometimes. I find myself choosing a warm bath over going out for drinks with friends because that's means I'll get a good night's rest.
You make these choices and as with any choice, there are consequences. The consequence of these choices is loneliness. I'm talking about that deep feeling inside like no one understands you and that there aren't enough tears in the world to make it better. Am I the only one feeling this or do some of you understand what I'm talking about?
I'm not trying to sit around and feel sorry for myself because I know that doesn't accomplish anything. I just truly have a hard time relating to other people sometimes. They can go running if they feel like it or go for a weekend away without having to worry if they've packed all their medications with them. There are so many people out there who are taking their health for granted and it drives me crazy. At the same time, I know that I was exactly the same way before this miserable disease hit me.
I have to say that one of the things that has been helping lately has been the online support group meetings that we've started on the Molly's Fund website. It's really nice to be able to sit on my couch in front of my computer and talk to people who have the same problems I do. There is something about the anonymity of the meetings that makes you feel like you can say anything and it makes you realize there are other people out there like you. If anyone is interested, we are holding the meetings each Thursday night at 6 p.m. PST. They really can make a difference on those lonely days. I hope to see some of you there soon and maybe we can help each other from feeling too alone.
"People are lonely because they build walls instead of bridges."
Joseph F. Newton
Thursday, May 20, 2010
Lonely Days
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25 comments:
hi molly,
yes... i totally empathize. it has taken hold of all aspects of my life. all decisions are first put through the lupus filter. sometimes you do have to say f*** it and go have those drinks and sleep it off the next day (or two or however long it takes to recover.) i have isolated myself, too. and work on not falling into the abyss. last night we had little people over to play a board game and i didnt try to entertain, sat around for 2hours and socialized. no alcohol and went to bed on time. it was awesome!
i will try to join the chat soon.
all the best,
tina from raleigh
I found your blog just looking at articles about lupus. Your latest blog dated May 20th really hits the nail on MY HEAD. Yes, I find myself isolating myself more and more this year but it's because of the pain. It pretty much regulates everything I do and where I go. It also is because the few real friends I have all work, so there is nothing to do with anyone. I was once a vibrant, outgoing, outdoors woman and now this disease has shunk me down to someone that can't be in the sun very long and who has to walk with a cane due to the pain in my joints. When I do say f@#& it and go ahead and act like I'm normal and do the things I always use to, Yes I end up paying for it in bed for 3-4 days, so I have to moderate everything I do.
I also lost my mother 10 months ago and I truley feel lonely without her because now I feel like I don't belong anywhere. I can't work so I have no mental stimulation other than from my own reading and/or hobbies I find to entertain myself. My nights are just as lonley because I can't sleep due to the pain, even sleep medication is not effective.
My medication bag is almost as big as my backpack when I travel, lord help me if I ever left that behind. I have read many blogs from others with this disease and we all say the same thing and have the same complaints and the only true cure for our disaese is positive attitudes. It takes alot of prayer and strenght to acomplish this ON a DAILY basis, I can't but I try. I think I would be able to KEEP my postive attitude daily if I wasn't so lonley.
Thank you for shaing your blogs with the rest of us and allowing us to share ours back
hi dee!
find a support group... have someone from church visit you... call your mom's old friends to chat about her. stay engaged! don't give up. how sad that this disease cuts us young women at the knees and we struggle to stay afloat. i lost my mom to lupus at 11 so i understand that pain, too. praise God for all of the wonders in life! never be afraid to ask for help. ps. are you depressed?
tina
I understand. I just posted a comment on a lupus website about loneliness. I feel like no matter how much my family understands and my friends do, they don't. They get offended if I just don't got to a party, restaurant, etc. they think it is just sitting there. I feel like I am the only one who gets it. The sad thing is that I wish I did not get it. My Rheumatologist said I am normal for lupus/fibro/ many other things. Not a lot of sympathy. Thanks for doing the blog, it was my first visit it won't be my lats
Yes, thank you Molly for voicing your loneliness. It's crazy to be able to read the blog and these comments and know exactly how you all feel. I've been in a severe flare-up for 19 months now, since 20w eeks along with my daughter, who was born 10 weeks early (30wks gestation) due to my failing kidneys. I can't seem to kick it into remission this time, have tried so many meds now and there seem to be no more answers. I think we have to chose isolation sometimes just because we have so much on our plate to deal with... it becomes an issue of overstimulation to be out, conversing with friends. And yes, when we decide to say F it and go out and have a good time, then we pay for it for days and days to come. Seems the people that need a break the most can't ever get one. Not many people understand, so it is nice to have a place to share thoughts and feelings so we don't feel so alone. I too will be visiting this more often and hope to join in on a Thursday night event soon. Gentle hugs for you all, you'll be in my thoughts and prayers tonight! xoxo Nicole
Girlfriend, I beat my Lupus with raw food. I am still on meds but I feel finally like a normal person again and it was all due to "going raw" when I still didn't feel 100% even with my meds. Give living food a try I KNOW it will help you or I will eat my hat!!
Joyfuljo@gmail.com
i have had lupus for 24 years now i developed fibromaligia, when i first diagonesed nobobody ever heard of it, now i have major back problems,but i learn to live with it
Thank you for this post! You have described my current situation perfectly. I too am lonely. I have a tendency to go into hiding when I have a flare-up. I thank God for friends and family who try to understand. I went from being an extremely active and happy gal to feeling crippled and sad. I miss the old me.
Hi Molly ~
I so totally agree with your post about being lonely. I have always isolated myself during exacerbations of the lupus. I was so social before lupus and still am when feeling more normal. (not often these days). It is hard to be around people when in pain....I have an over-whelming feeling of sadness at times....I miss riding my bike along the coast...but I did take a short walk in the warm California sunshine and had to smile at such a small victory, but a victory none-the-less. Small graces......
Molly and everyone,
It has occurred to me that one of the greatest hardships of lupus is the loneliness and sense of isolation. When you watch an animal who is suffering, they go to a quiet, dark and peaceful place to heal and recover with all of their bodies energies and capacities directed toward that. In a lupus patient (esp. in a flare), we have no idea when that period will end. Oftentimes that long-term curling up can turn into something more pyschologically damaging. That is why I always argue to lupites to "STAY ENGAGED!" We are social creatures who love and experience (and provide) God's grace through human interaction. A person's innate value is eternally more valuable beyond what a person can "do."
ps.
Hi Molly.
Oh can I relate! Isolation, and so much rest I can't believe I don't have bedsores! 12 plus years since my dx of SLE, I have pretty much accepted many of my limitations...but it still makes me sad. No one understands except another Lupus-ite
I have come to understand how much diet affects my disease. I really feel awful unless I eat clean meat,adequate protein, organic veggies, etc. I recently gave up gluten and feel much better. Miss the donuts,bread,etc...but it's worth it;)
Well I am glad I found your blog. You aren't alone, and I hope I can be of some help to you! Gentle hugs, Jules on the west side.
I agree with your thought that "People are lonely because they build walls instead of bridges."
And you've justified your view by sharing your feelings. Yes, it's hard for us to relate your situation and your feeling. I know you'll overcome it soon. But I've happy to know that you've a good friend like Molly.
Hi Molly,
Its not good for man to be alone.
Don't give your disease so much power. Explain to your true friends the ups and downs of the disease. Join a church and fellowship when you can and interact when you can.
Sometimes you may need to just DO IT, in pain and when you do not want to. Every week try to try something new--don't dwell on what you can't do try something you can do that is new and different.
Oh yes yes yes......I isolate so bad. My entire family scolds me about it & my friend tells me I need to get out more. But, I just can't sometimes, I don't want to & I don't want to feel guilty having to EXPLAIN why because I don't know why other than I don't feel good....or...I have no reason to. You HAVE to have goals, passions, etc. so my little grandsons have given me that. When I heard "Gram? (3 yr. old calls me Gram) will you come watch me at swimming lessons? I'm doing rwwwweally good!" I jumped outta bed, got ready & went. I have moved to Portland & don't know anyone but my hubby, so I literally do not leave the house. This isn't good. I read everyone's comments and can agree with you all. I was once vibrant, active, an "achiever" as one person put it. But I feel that it is OK to have days where I just isolate, I call it resting without guilt, but I just don't want to do it all the time. I'm glad I've found this site & possible a support group near me.
Oh yes yes yes......I isolate so bad. My entire family scolds me about it & my friend tells me I need to get out more. But, I just can't sometimes, I don't want to & I don't want to feel guilty having to EXPLAIN why because I don't know why other than I don't feel good....or...I have no reason to. You HAVE to have goals, passions, etc. so my little grandsons have given me that. When I heard "Gram? (3 yr. old calls me Gram) will you come watch me at swimming lessons? I'm doing rwwwweally good!" I jumped outta bed, got ready & went. I have moved to Portland & don't know anyone but my hubby, so I literally do not leave the house. This isn't good. I read everyone's comments and can agree with you all. I was once vibrant, active, an "achiever" as one person put it. But I feel that it is OK to have days where I just isolate, I call it resting without guilt, but I just don't want to do it all the time. I'm glad I've found this site & possible a support group near me.
Hi Molly,
Today is one of those days where I am isolating myself. So, just reading "Lonely Days" I called a friend and left a message, saying lets go for a walk. Thanks.
hi all... sending prayers up for you tonight!
tina from raleigh
Hey Molly.
I just want to say thank you.
Lupus dont make life easy.
/ Victoria - Sweden
Hi,
I found this blog searching for information about lupus. I got sick 2 years ago and had to stop working and this is when my nightmare begun. Doctors didn't seem to know what I had, my family practice doctor was just running lab test everytime and referring me to specialist needless to say that I ended up changing doctor, to realize that unless you can find a doctor that cares about people you are very hopeless. At this time I'm seen 5 specialist. At the begging of my sickness and through I've been searching online all my symptoms and everytime the answer is lupus. I've been diagnose with fribromyalgia, but the medications I take for it done seem to work at all. I've talked to various of my doctors about the possibility that what I actually have is lupus, but their reaction always seems to be "I'm the doctor not you". I'm now in the search of a new reumathologist for a second opinion, but reading all your blogs and the ones from other people I have no doubt that I have lupus. I use to be a very outgoing person and the star of the parties. Now I live a very lonely life. I don't like to make plans with people because I never know how I'm going to feel and don't like to cancel at last minute. This illness have change my life 100%. I have no support from my family since I got sick they've been very distant. The only support I have is my husband. He is been there with me though thick and thin. He knows how much I suffer and he has seeing all I've gone through.
I'm glad I found this blog, your blog and your bloggers. You all gave me a push to keep trying hopefully I find the right doctor to ease my pains.
Hi,
I found this blog searching for information about lupus. I got sick 2 years ago and had to stop working and this is when my nightmare begun. Doctors didn't seem to know what I had, my family practice doctor was just running lab test everytime and referring me to specialist needless to say that I ended up changing doctor, to realize that unless you can find a doctor that cares about people you are very hopeless. At this time I'm seen 5 specialist. At the begging of my sickness and through I've been searching online all my symptoms and everytime the answer is lupus. I've been diagnose with fribromyalgia, but the medications I take for it done seem to work at all. I've talked to various of my doctors about the possibility that what I actually have is lupus, but their reaction always seems to be "I'm the doctor not you". I'm now in the search of a new reumathologist for a second opinion, but reading all your blogs and the ones from other people I have no doubt that I have lupus. I use to be a very outgoing person and the star of the parties. Now I live a very lonely life. I don't like to make plans with people because I never know how I'm going to feel and don't like to cancel at last minute. This illness have change my life 100%. I have no support from my family since I got sick they've been very distant. The only support I have is my husband. He is been there with me though thick and thin. He knows how much I suffer and he has seeing all I've gone through.
I'm glad I found this blog, your blog and your bloggers. You all gave me a push to keep trying hopefully I find the right doctor to ease my pains.
Judith don't give up hope.
I take Plaquenil and it changed my life in about 3 days but thats unusual. I wonder if you could demand a small prescription just to see if it helps.... I went on a raw food diet and it helped me tremendously as well. I feel like these two things make me a whole person again and it gave me my life back. My doc is Barry Eibschutz in San Luis Obispo CA. And he knows where your blood test can be sent to confirm lupus. There IS such a thing and I hope your doc can get his head on straight and serve you as he should! Hugs, -Joanne
I'm glad I found this blog, your blog and your bloggers. You all gave me a push to keep trying hopefully I find the right doctor to ease my pains.
Hi Molly,
Its Dee here again and another year has past since my first blog dated May 23,2010 and I have to say I'm just as lonely, the only difference is I have accepted it. A year ago I was just coming into all the aspects that this disease was taking on my life and all the changes I was having to make but now I have accepted everything I have to do and when I need to do them, as PLAZBLOG says "I have to put things through the Lupus Filter" Its still not the easiest pill to swallow and I still grieve my "Old life" but needless to say I have accepted this life as I have now. I'm still the same inside and actually I think I have matured alittle more, just because I have to think about my actions more than just doing anything, so I think more and analyze more than before, if this makes any sense.
I still am lonely as I said but it doesn't bother me like it did. I still have flares that sometimes last 2-3 months like this last one, it lasted from Oct. 2010 to Jan. 2011 and I'm on no Lupus medication anymore due to running out of insurance but thank God right now I'm doing good. I still am taking pain medication to maintain my pain level but I am taking less. I continue to read all I can to understand this disease and yet it still makes no sense at all to me of 'WHY". My sister has also been diagnosed this year with Lupus and my mother had Scleroderma so there is something to say about the hereditary theory.
The one thing I want to stress to all that read these blogs it to take one day at a time and continue doing all the things you love to do when you can. Don't stop living and hide just because of this disease, don't let it control your life. Yes I have had to re-adjust my life to suit this disease but I don't let it control me. When I'm feeling really bad, of course I don't want to be around anyone, I wouldn't be around anyone if I was just sick and didn't have this disease, so think of it like this and when you feel good make yourself get out and see the beauty of the earth, smell the flowers, hear the birds,LOVE, LOVE,LOVE more and thank god for being alive and I garrantee your attitude will change, don't stop doing the things you love just re-adjust. This year I have found that a healthy attitude DOES help with the disease. I know I read all about it too when I first learned about my disease and I said "Yea sure it does" because I was in such a shock about this disease and what it does and what it did to me but I know now that a positive attitude does help. When I'm in a flare or just plain sick from this disease I just tell myself " this too shall pass" and I will feel better again.
Anyway, I won't go on and on, the main thing I'm trying to say is that accepting what has happen to me has helped me to re-adust my life. Lonelness can be changed, just call someone, it's that simple.
I totally can relate with this blog. I myself was a loner and I am thinking that no one can understand me.But, after a month or so, I found an organization like lupus here in my location. I was lifted up and understood why sometimes I feel so alone. I realize the quote "everything has a purpose". I learn a lot from them.
Anyway, thanks for sharing this post.
OMG...yes, yes, yes!!!
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