Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I'm so sad that this disease has caused me to become so anti-social, I miss the days of energy and interacting with family. Now when there is family over on Sundays, I stay in my room because, its "too early" for me and I don't have the coffee and meds to convince me I'm ready for the shower. I feel so ashamed that I'm in my pj's and wished more family understood. This is my 5th or 6th treatment now and I'm starting to lose the hope I once had so much of. When family leaves I come out and eat whatever the meal was and talk with my grandmother, but feel so lonely inside. I told her thank you for always making me feel I'm part of the family despite my illness. She told me, "You don't know, when you go through something, its like I go through it myself." It brought me to tears, and gave me a little seed of hope to not give up yet, least for my grandma. Anyone go through this?
I hope you find some relief soon and can try and get back some of your former self!
Hugs!
don't lose faith - and hang as much with her as you can. she's good stuff
depot
Although it's a combo of just keeping up with life demands in a body that won't cooperate.
Mornings are a no way, nothing's gonna happen deal.
I do feel for you very much so.
God bless your grandmother. She's got that mother/grandmother heart that encompasses love & understanding. I'm glad you have her.
It's hard being patient when looking for a treatment that will work.
Yet we have to keep the faith there's something out there that will give us some relief & quality.
Your not alone. Here's to better days a head & regaining part of our life back.
Blessings & bless that grandmother of yours.
Sammy
Have you or your grandmother tried to explain to family so they can try to understand your situation? I wonder if you felt comfortable talking with one of them if you could slowly begin to change your situation toward feeling included.
Could you ever imagine staying in your pjs, getting to the couch and wrapping in a blanket so you can be around everyone else? Just a thought if your comfortable doing that in front of everyone. If not, could you ask that your grandmother invite the family to come later, at least one Sunday a month?
Please know these are just my thoughts and I know thoughts are easier than actually doing these things. I do a lot of what ifs and idea generating to figure out how to cope.
Thinking of you...
You did not choose RA. Your self worth/value/esteem is not/should not ever depend upon what others think of you. If they've a problem with you or how you happen to present yourself at any time, it is THEIR problem not your problem. Therefore it is their thing to deal with not yours to worry about. You concentrate on keeping the six inches between your ears as positive as possible and ignore what everyone else thinks/expects. That takes a little practice but you can do it!
When I start down the mental downer road I think of the old SNL bit where the actor sat in front of the mirror and gave himself a pep talk along the lines of "I'm good enough. I'm smart enough. And dog gone it people like me." He is now a United States Senator.
I am going to love you and support you through this forum and at the same time I am going to give you some also much needed prodding...
I have had this $&*%^-ing disease for nearly 20 years. I have lost so much to to and I have gained so much FROM it... Everything and I mean EVERYTHING in my life is harder and yet I am totally UNWILLING to submit to the disease. Don't think that I don't sometimes feel exactly as you do right now. My "can do" attitude is a great deal of work sometimes and honestly sometimes I suck at it. But I do NOT stop trying. Every person out there has struggles -- ours are profound but everyone struggles.
I am going to ask that you do something for yourself that you are not going to like at first but I still ask that you try really hard.
The isolation is in part a safety for us. Gosh do I know that one. But it is also self-defeating, the more we do it, the more we need it, the more lonely we feel, the more isolated we become. Reaching out to this forum is a start -- but you can still do that in your pj's. So it is a start ONLY. I need you to do more...even when it is the LAST thing in the WORLD you want to do. It will save you.
I need you to make a couple of commitments to us in this forum and to yourself and the grandmother you love so dearly.
I need you to commit to getting out at LEAST once a week and do something for someone else -- I ask that you maybe volunteer one day a week at a retirement community to take a short walk with an elderly resident who has no family to walk with. OR volunteer at your local shelter to get some of the slower, calmer or elderly dogs out for a short walk. You need to get out and DO something FOR someone else and at the same time it will empower you!!
Do NOT lose hope at treatment 5 or 6. You are tougher than that. This is a journey and at first it takes time to find that particular path that works for you. We have ALL been there and we are all here to share our experience, strength and hope with you. One day it will be your turn to share yours with someone else.
When family comes I want you ready to see them and get out to be with them. They are part of your strength and you are choosing not to be a part of it and you are refusing the injection of hope that sits right outside your bedroom door on Sundays. You have the choice to stay behind the door, or to put on some clothes and get out there to at least be a part of it for part of the time. You can tell everyone that you are limited and that you may need to excuse yourself -- but I ask that you commit an hour to to it each Sunday. We can ALL do something for an hour. I believe that you will find that each Sunday will get easier and easier.
Don't continue to choose isolation. It is a killer of dreams, hope and self worth. You are worth MORE than that and you have a great deal to give. It looks different than what you are used to but do not believe that just your presence for an hour isn't valuable to someone else.
So, do you accept the challenge and are you willing to have us be your accountability partners? We are here to support each other -- sometimes it is with hugs and prayers and other times it is with pokes and prods.
Do let us know!! We are thinking about you and praying for you!
RMG67
we have a group of 20 somethings (you are 32?) and maybe they will chime in also. some are in school, some are working, some are both in school and working, some have kids, some are on SSD, all over the place. there is such a huge range of functionality and supports in place or not with this disease.
what age were you diagnosed at? do you mean the 5 or 6th dmard and/or biologic?
what does your peer support system happen to be like?
post anytime from whatever emotional, or physical place you happen to find yourself in or PM me off list.
depot
Hugs!
Debbie
BUT, on Sunday morning she asked if I wanted to join her for a couple hours of errands. Of course I said yes so I could spend more time with her and it was mostly as a passenger in her car, oh, and another large coffee :). A couple of times she mentioned it wasn't the most exciting of things to do and she hoped I wasn't too bored. What she was picking up on was the low,low energy I have for several hours in the a.m. It takes coffee, meds, shower,etc. to pull it together.
My point is even when I do get out to do something its a challenge to manage, due to reactions so to say, or the adjustments needed like leaving early, staying over, passing on walks, etc. I can tell she still thinks with the next round of infusions I'll bounce back like I used to-hope so! Many layers of issues to deal with for an illness like this. Take care of yourself and no shame.
i agree, there is no shame in DS RA....(a la tom hanks)
Depot