What Gets Us Down

Tell Us What Gets You Down

Sometimes just knowing that there is someone else who is struggling with the same things you are can make a world of difference. You aren’t alone! We asked: What part of arthritis is the hardest for you to handle emotionally? And you responded:

Having RA, has triggered such terrible depression.�� My husband and me just retired, and both love to play golf and spend time with our grandkids.��� Well, not anymore.�� I make plans to pick up the kids from daycare, and that same day, I can barely get off the couch.�� Most of my pain is in my hands, back and legs.�� I’m taking Methotrexate for 4 weeks now, and no difference.�� I’m very tired and if anyone knows about swallowing problems, please contact me.�� Since before they diagnosed me with RA, I noticed I would occasionally have trouble swallowing my food (mostly at night) I was checked by and ENT and also had a esophagus check done.� Nothing shows up that would cause that. It’s getting worse lately, and also my eyes hurt so much.�� Is this RA
also???��� please, if you know something, email me bhampshire@socal.rr.com
I’m terrified and depressed and don’t want to give in, but I wake up most of
the time crying and go to sleep crying.
We need more support groups, (like AA) so we can share and feel better.” -Betty in Chatsworth

Managing a chronic, progressive, debilitating disease is a daily effort in itself that requires energy I don’t have. Getting out of bed requires energy. Energy management requires energy.� I give myself positive “talks” everyday.� I tell myself to do just enough for today. That way I feel accomplished everyday. – KKN

I agree with all I’ve read, the severe fatigue, not being able to be as active with your kids, feeling like you let them down, always needing a nap.� But what I find even worse is being so hard headed�I don’t or can’t ask for help because�I am so tired of hearing�the disgust�in people’s voices because they don’t think my house is clean enough or that I am making quick enough progress wading through the mess that’s piled up because I have felt so rotten.� I continue to push myself harder when I should slow down and that causes more flares.� I don’t want people to have to do everything for me, but some consideration for this disease would be nice.
I too was the organizer, the do all person, and that is hard to let go of.� I would love to be able to make plans ahead of time instead of waiting to see how I will feel that day.� I miss the activities of life and hate having to be happy with only the minimum.� I miss being happy and fun-loving.� I miss me.” -Cheryl
“What gets me down? #1 is the fatigue. I have RA and FMS. I don’t know which is responsible for the fatigue, but I know how a body feels when it “weighs a ton”. I lie there unable to move my arms, unable to raise up, or roll over w/o help. I know what it feels like to walk to the bathroom holding on to the wall and legs still ache and burn when I get back to the bed. I know what it feels like to try to get out of the car and get into the house w/o collapsing. How many prayers have I started with “Please God, let me have enough strength to finish this (whatever I’m doing at the moment) before I have to sit down and rest.” I’m a hospice nurse and my patients depend on me. Sometimes I have less energy than they do. For me the fatigue is worse than the pain.
#2 is the attitude of others. If we had some understanding from those who count we could cope so much better. Because our disability is not visible, people think it is minor, or all in our heads. How many times have I heard “fibromyalgia is not a real disease”. It hurts when ppl look at you like you are just lazy when you tell them you can’t help do some physical task. Or when you have to call in to work because you can’t get out of bed. I thank God for my very understanding husband. He watches for ways to help, even before I ask. Also, my mother has RA, since she was 37 years old, so I get a lot of support from her. As others have said before me, looking ahead to the future can be very discouraging. We truly do live one day at a time, not knowing what the day will hold until we get out of bed that day. I pray for a cure before it is too late for me. But if it does not come soon, at least it can come for those who come after us.
Thanks for letting me put in my 2 cents.” -A�”After being an active person taking care of a family, large home and yard by myself to end up spending more time in bed or on the couch because of the pain in my legs, is so hard.� Limping when I walk, dragging my feet and people looking at you like its all your head.� Its sad, the tiredness, fatigue and sadness the goes hand and hand.� Wondering if you will ever be your old self again, I pray for that, and maybe it will happen, I will never give up I hope for that.� Anything is� possible.�” -I.“what gets me down.am 24 yrs old and i have a 5yr old son and i can not do the things i should be doing with him i wish i could play more with him do the things what a mum should do with there kids. go out more with him etc………..and I’ve got all my family who live near me but they don’t help me much they seem like they don’t care when i try to talk to them about things they don’t want to know and it hurts. I hate not having the life i use to have,i hate being like this. the thing that hurts me the most is not being�able to do the things I should be doing with my son i really wish i could do more with him I really do. ..��������” -D”i am 22 years old. i have had arthritis as long as i can remember. i learned classical dancing for 8 years and professionally choreographed several performances. i have been told by hundreds of people since I was 5 years old, that i am the best dancer they had ever seen (not to sound conceited, but to express my grief.)i LOVE to have fun! i was extremely social, always had friends, always involved, a good student, and had so many dreams. my dreams are shattered. not because of my ability or skills, but because it was God’s will to give me this painful disease. what hurts the most is that you just want to be “normal”. no one understands when you say your feet hurt, or your back hurts. many of my friends just laugh (not intentionally) and say, “damn you are acting like an old woman!” in the past, i have tried to just “move on”. but this disease is not like having a boyfriend you just broke up with. eventually you can find another one. with this disease, i only see things getting worse for me. i am 22 and want to kill myself. imagine how i am going to feel 10 years from now? i am only 22 but i feel 90! i always had a dream of meeting the man i would love forever. i don’t want to get married now, because i don’t want to ruin his life or my children. either that, or he would leave me because i am constantly in pain or depressed. whats even worse is that you cannot plan anything because you just don’t know how you will be. sometimes i just get a flare out of no where. i don’t want a job because i cant wear high-heeled shoes. that hurts my knees, but i always loved them. i cannot be fashionable or look good. i never thought one thing could ruin my whole life. in a way, god blessed me because my dad is a physical therapist. isn’t that funny in a sick way? also, when i have tried to lose weight, it works! but then, there goes my knee and there goes me looking/feeling good. i feel that this is one of the worst diseases a person can have because it is so tormenting. there is no cure, no figured-out cause to why it happens, and worst of all…you have to die WITH it not because of it. if i was married with children and had responsibilities i would not kill myself. but, i cant see me going through anymore suffering and physical pain for no reason. my feet hurt, back,knees, ankles, fingers, wrist, hips, elbows, shoulders, neck…this is a living hell! please pray for me and my family. i don’t want to hurt them, but its either that or me suffering forever. i just wanted to be happy in life, but i don’t think its happening. i take all this as God’s will”. -N�”Having O.A. It seems it doesn’t show so it should not hurt oh if only they knew. my consultant says lose weight is this going to stop the pain in my neck hands fingers and wrists? he changed the subject!!” -N.”What gets me Down – Is the look in my child’s eyes when I tire so easily while at the mall. The first time I had to use the handicap cart at WalMart and the look in my child’s eye. The day my daughter told me I Embarrassed her, with the way I now walk, when she is around her friends. I can handle the RA & OA , the attacks on my body, my mind, my soul, but I cannot handle what it is doing to my Husband, who try’s to do everything to make it easier on me, or what this is doing to my children. That had a mother that climbed the trees, ran the cattle pens for that small calf that needed help, the mother that worked for weeks on a party they planed with 30 guests. And now what they have, a mother that walks and looks like the hunch back, that is taking so many pills and shots. What thoughts must run thru there minds and how they cannot defend what is happening to them from people who do not know what is wrong with their mother. The peer pressure, oh I do not know how much longer I can stand what this is doing to them.” – N.I was diagnosed with RA in January 2000 and I couldn’t believe this was actually happening to meHere I am 46 yrs old and I feel 90 and I finally met the man of my dreams who is understanding and loving but I am in so much pain at times that I just cry I have so much life left to live and be happy but I feel like I am falling apart I refuse to give in but sometimes I have no choice.

I just wish there was some relief and I wish I did not have to take all this medication especially the steroids but its that or scream The people at work don’t help either they constantly ask why am I limping and did I hurt myself..It does get frustrating but I am going to make the best of it for my new husband to be and for my self no matter whatIt’s hard but my life is worth it! -PMy life has become nothing. 28 yrs old, used to love life. Now no more enjoyment, no friends anymore, constant medications that make me sick all the time. Methotrexate and Enbrel lower my resistance so much that I develop a pneumonia. Then have to stop it, go on strong antibiotics, pain comes back, cycle continues. Next time I get really sick from Methotrexate or Enbrel, I will not go on antibiotics this time. Death from untreated, severe pneumonia will hopefully occur. A Natural death so family won’t know it was suicide, they won’t be hurt as much. Pain will be gone finally……………I’ll be free. – MHey Gang, I just read thru the what gets me down, and I was surprised to see myself there, everything from the quilt to the look on peoples faces ,the questions , I thought you were getting better?I’ve found people shy away from me when I look like I am in pain, I think they mean well they just don`t know what to say. I try very hard not to show it but I am a Hairdresser and a limp is pretty hard to cover up . I think it scares some of my friends and makes them uncomfortable. I am very lucky I have a wonderful understanding family. Dealing with business has been a totally different experience. I try putting on the happy go lucky attitude but it only works for a while , well today is another day and another chance to do the best I can do , we will see what happens next. Big Hugs to all -The fact that I`m not able to do the household things I used to do and I don`t get any help form anyone. Don`t have any family or friends to help. My husband does some, but he`s satisfied with a messy dirty house. And I was always a very good housekeeper. I also miss gardening and working in the yard. My husband just retired and we had planned on doing so much traveling and going here and there….and now that`s out. I also have severe food allergies which keep me from eating at restaurants. These things are the things that depress me the most. It`s like my life is over for the most part. -EWhat gets me down?
Well, I used to be the “social organizer” of my group of friends. When I got really sick, I expected someone to take my place, and, ta dah! No one volunteered. And I *really* loved this! Planning the guest list, where everyone would sleep , what dishes everyone should make . I literally had to make a new “group” of friends… My criteria? Those people who knew I was sick and didn’t care. Those people who didn’t mind wheeling me through the airport when we went to Europe.

My family, not because they don’t care…. but because they care so *much*! It’s almost smothering – I can’t have a Remicade infusion without at least 2 of them there, and sometimes there are 4! I have 4 siblings, 2 siblings in law, 1 stepsister, 1 stepbrother, and my parents. I usually have to lie to them after my visit to the Rheum….Otherwise, they’d have a total hissy fit. My Mama and my baby Sissy once collared my poor Rheum in the hall and grilled him for a good 30 minutes… I know, ’cause I could hear them, and, when I realized 30 min. had gone by, I hauled myself out in my little gown and ordered them back to their seats. The Rheumatologist thought it was funny, and he’s treated me very well for over 15 years, but still…. I’m 44 years old with a medical background, and my mind is not gone yet!

And the last one….. NEVER being able to make plans!!!!! I never know from one day to the other how I’m gonna feel – a good friend of mine got us tickets to the Rolling Stones <$300 tickets>, and I’m not sure I can go.

I’ve read y’all’s stories, and mine pretty much pale by comparison, but this is how I feel – I used to be the one “in charge”. I’m the oldest child, I was the social organizer, and I was the boss at my former job.

Now, my sibs freak out over goofy stuff that I used to fix, many of the people who *loved* my parties have drifted away, and I resigned from being the boss and went to work as just a regular peon, thus removing a lot of my stress.

And I *still* go to a psychologist once a week!!!!

I’m sick of this crap. 🙁 🙁 🙁 🙁 -L”I have C.R.E.S.T. with fibromyalgia. It is not RA, or even considered “real” arthritis, and not considered severe or debilitating by my past employers or ssdi, and I don’t even think by my various doctors. the pain in my hands is unrelenting, enduring, I have open weeping sores from calcinosis, that they can not control. The nsaids and anards do nothing! I am allergic to codeine in all it’s forms, and the doctors will not prescribe anything else that is effective.
I am crazed, my moods can be as vicious as the pain, the “elevators” have started my teeth grinding, what are they supposed to accomplish?
I have had to stop doing the only thing that gave me any pleasure, which was showing my dogs and helping with rescue. I am so tired of the “happy success stories” I read in Arthritis Today or drug company testimonials.
Sometimes I think of flinging myself off a bridge, only with my luck I
would probably survive..” -D.”I was diagnosed two months ago, I feel so down because Im just not able to do things like I once could. Im only 43 and feel 93. I need to get so much accomplished but the aches and pains. I somehow broke my foot, because my bones are brittle. The Dr gave me insoles for my shoes and sent me home. I have had this for yrs, but never could get any answers. I ache all over like I have a constant case of the flu. This just stinks, I used to be so active. I can’t even go out walking because of the pain. I have a long road ahead, but hopefully my Dr will do what needs to be done.” -?The thing that gets me is – have I ever done something so bad to deserve this. I am a 31 year old woman. Used to style and profile in the spotlight. I can’t even cook food for my kids 11 and 4 (girls) that often. My kids really see what this does to me. They constantly complain….why can’t we ever go anywhere. They just don’t know I can’t. (Sorry) This Rheumatoid is something else and I feel so sad everyday. The reason is I have absolutely no source of income. The welfare said, “I need to work in order to get benefits and the ssi denied me 2 years ago, but I am planning to go back this week. I refuse to take the medicine….because it doesn’t work. I’m mean all day, I stray away from people. I haven’t talked to my friends and family in a long time. My boyfriend thinks I’m lazy and always yells at me and makes me cry on a daily basis….I wish I could leave him because he is a source of my depression and the source my daughters and I live off of. He is the reason I have bursitis in my hip. I have 2 knees that are deforming with RA. I have had this condition for over 7 years…..the pain. I was diagnosed 1 month ago. I was just diagnosed a month ago because I didn’t have insurance, so the problem worsened. My knees are past hurt they burn now and I must lay down a lot. I exercise a lot, but that doesn’t help either. I flunked the test on depression. I got every answer right. I have no peace in my heart….Nobody to talk to….my parents died in January 2000…Well pray for me – S.M.My house being a mess, with a husband and a 19 yr. old girl-17 yr. old boy-12 yr. old boy and an 8 yr. old girl, when my family should pick up after themselves! My husband asking on a rainy day “why are you so moody”? Loving to take the family to the mall and then hurting too much to walk around with them. Taking my 8 yr. old to the bus stop, praying the bus will hurry and get there so I can go home and rest. Most of all is when my two older children speak of my running through the park and jungle gyms with them and my 8 yr. old asks why I never did this with her! – S.K.
The hardest part for me is not being able to remember what it was like to be pain free. I’m 39 with young children and I have to ask them to stop and help me up or out of the car or down stairs or up off the ground when I fall. I feel like I am 99. I feel bad that they don’t have a mother who can keep up with them. It is so hard to help someone who doesn’t have RA understand what this feels like.” – RMHaving a chronic disease then invoves so much of your life makes any person a real target for depression. There are times when we must go through the grieving process as we watch so many of the plans and dreams die right before our eyes. RA can strike anyone. It doesn’t matter if you were the homecoming Queen or a couch potatoe—the pain,and sense of loss is the same for each and every sufferer.Each day revolves around RA—-pain management, fatigue, and depression. I have had RA for 19 yrs. Soon I will have had it longer than not. I’ve been a nurse for 23yrs{went on disability 4 yrs ago] wife to the same husband and the mother of 4 children. That is the hard part not living up tp the goals and dreams that I had set for myself early in my life. What keeps me from being a prisoner of depression? Knowing that I’m not my disease—-that maybe on some days I still have something to give back into my world that is in many ways clouded over with this disease.”” – TI met a wonderful man who (I thought) was crazy about me. He often talked about me moving to Canada to be with him. When he found out how much my Arthritis medications would cost if I had to pay for them myself, he said that he didn’t want to end up going hungry and living in a cardboard box because of that and told me to stay where I am. I now feel like my Arthritis and medications will keep me lonely and single because of what he said to me….and that really depresses me!”” – VHThe pain is unbearable. We all know & suffer. I’m a retired chef working 60 hr. a week, has taken it’s toll. I’m ready for a total knee replacement. My Dr. is sympathetic. I can stand a lot of pain but it’s really wearing on my mental and physical strength. I have it in my right knee. Bone on bone, I also learned I have it in my left shoulder. Not as severe, I just want to be my old self. I need some encouragement. Don’t sleep at night, I cry when I’m by myself, is this normal.” – VD“Having to explain why I can’t lift, go out in the cold,ride long distances when I look so normal, I feel like I am making excuses and feel guilty so I do things I am not suppose to do just so they won’t look at me like I’m crazy.” – BB”I feel really sad that my mother and sister don’t understand my arthritis. They don’t understand why I feel exhausted and cannot commit to things the way I used to. My mother’s theory is that if I were thinner, I’d feel completely better. My grandmother had a form of RA, and she only had a flare-up about once a year. This is my mother’s point of reference, and she assumes that my RA should be just like my grandmother’s.” – M“I’m 18 years old and have RA. Therefore I worry about how bad my illness may get, considering it is fairly bad at this age. Sometimes I just go into a trance and I picture how I might be when I’m older and how others might respond. The most important thing that depresses me is the fact that my own mother rejected me at a time I needed her most.” – NM”I worry about how bad I may get. I feel bad when I can see the hurt in my husbands eyes because I am in pain. I worry about being able to continue teaching which has always been my passion.” – dg”I think people look at me and think I look fine, and it must all be in my head. And I am in so much pain 24 hours a day, nothing seems to help. I feel like I am slowly dying inside hour by hour, minute by minute. My body is In so much pain that it is hard to sit on the toilet when I have to go void in the middle of the night, not knowing if I will be able to stand up and walk back to the bed, and then not being able to go back to sleep when I get there. This is not life this is dying a slow and painful death. I want to feel like I used to, I loved my life, water skiing, dancing, gardening etc. I miss the old me. I ask myself WHY ME?” – Sheila“I fear growing old and becoming extremely crippled and/or bedridden, and having no one to take care of me. My mom is dead, and I’m not married and have no prospects. I will have to rely on my dad’s family, but they live in another state. It’s scary to think about the future.” – Robin”The fact that my husband does not understand why there are times that I just cannot physically do something that he wants me to do. He doesn’t understand nor does he want to understand that I have changed for the worse permanently.” – Marion”Not being able to run about or go up and down stairs. It makes me feel so stupid that at 25 years old I have to shuffle about at home at night if I have had to do a lot of walking during the day. Although people don’t know what is wrong with me you get very strange stares when you get the lift instead of walking up one flight of stairs.” – Elizabeth”Not being able to do the little things I once could do easily. Having to plan each trip even to the local stores to best get around.” -Barbara”Prednisone side effects – thin, wrinkled skin, loss of body image. Look old beyond my years. This hurts!” – Gaye”I have always been a “just do it” kind of person. I cannot do this now. It makes me angry at RA, and sometimes angry at others, when I have to ask for help to do the simplest things. Or worse yet, have to explain why I can’t accomplish something that most folks can handle easily. This in turn leads to sadness when pain escalates. I can’t separate out the anger turned in, and grief when the pain is bad enough, long enough.” – Melanie”Loss of mobility. With FMS for over 20 years, I am no stranger to pain. What does hit me hardest is the inability to get around and just DO whatever needs to be done. Getting groceries has become a nightmare due to the amount of walking involved and I am still in denial about using the little motorized carts.” – DeeTee”That I will be old and alone with this illness.” -Vickie”loss of independence; there are many things I just cannot do anymore” – Peggy”The fact that what I’m capable of doing is always changing. Sometimes it’s large changes due to the damage to my joints. Sometimes it’s the daily stuff. Most of the time I don’t know how I’m going to feel when I wake up in the morning. I can plan something and then not be able to do it because I woke up feeling rotten. There are times when I don’t get my house cleaned as often as I’d like to due to a flare. I miss being able to go camping, to dance, etc.” – Raven”I am 34 years old, am the sole provider for my family, and have RA & DJD. I’m currently struggling to find an occupation for myself. I cannot continue doing what I’m doing so I’m going to school to finish my degree. Everyday in my head, I think…”What can I do? I have limitations, doctor’s appointments, and failing health. What career do I choose? Who wants to hire me?”” – Terri”The future.” -Linda”It is very hard for me to accept the fact that I can’t always do the “/fun” things that I would like to do. I make plans with friends with the stipulation that “I will have to see how I am feeling”. Luckily I have very understanding friends and a warm, wonderful boyfriend and they all understand when I am in pain and down. I feel blessed to have such a wonderful supporting group of friends and family.” – Sharon”Not being able to swim competitively has been the hardest thing for me to give up.” -Sue”Not being able to do simple everyday “housewife” things like changing the bottom bedsheet, or reaching into the refrigerator, or cleaning my cupboards, etc.” – Marilyn”Not being able to fulfill my life dreams. Not being able to dance and perform. Watching others do what I could have done. After spending your life since you were three years old working toward a dream, it’s hard to see it crumple. And it’s so hard to be around it, but it’s all I know. It’s my other love…theatre.” – Kashana”not being able to walk as far or as fast as I used to. My arthritis is in my knees and ankles. I see the disappointment on my husband’s face when I walk in pain.” – Susan

Tell Us What Gets You Down