I feel the need to talk to some one that’s understands. I just feel like I can’t do it anymore. My poor kids are suffering cause mommy in pain all the time and I have a two year old that weights 40 pounds and test my patients so much I just feel like I no good anymore. Really needs someone to talk to
I’m just in so much pain
You have came to the righ place for online support. Vent away.
You may want to find a local support group in your area for personal interaction. If you do not have a group for PsA try one for RA.
Oh, I am so sorry to hear you are in so much pain. I am here for you anytime you need an ear & or shoulder. Please do not hesitate to message me or add me as your friend. Try not to be so hard on yourself, this disease is very ugly & turns all of us into a monster at times. Everyone here is here for you. Keep us posted. Hoping to hear from you soon. (HUGS)
Thinking of you, you are a valuable person… having problems doesn’t change this, we all struggled with small children at times even when well. Please don’t be so hard on yourself, we are here if you need us x
Thank you Liz, I am having a really hard night tonight. My body does not match what my mind wants to do. I am still having a very hard time accepting what is wrong with me. For so long I believed that I was maybe lazy and for some one my age I should have no problem looking after two kids and working I use to, I try to think its a mind over matter thing. My hands and feet do not swell very much but they hurt they hurt so much and my neck and ribs and spin are the worst. I don’t like to get dressed because it hurts to wear a bra, but yet somedays I move beds around and I go out and am able to play with my kids and be super mom and do dishes and laundry and cook and be able to go to bed with a clean house. Those days however are becoming very few. My boyfriend does not understand at all he works from 5:30 am to 10ish am comes home and either sleeps until 4 or plays video games then goes back to work till 7 then comes and sleeps cause he’s tried cause he worked all day. Words can not describe how I feel that he watches me in so much pain but if I don’t ask him to help he won’t, I wish that he could understand how hard it is to say I can’t do it please help me get up why can’t he just come help me. It’s so hard that I push myself not to ask for help. But I’m not feeling very strong anymore.
priestesspink ;
I hear you. I fell into a depression because I went from being Super Sara to not being able to do anything at all. It was hard for me to admit I cant do it all, or even a fraction of what I had been doing. Do you have a counsellor or GP that can refer you to a mental health specialist? It is a hard road we travel, and its harder still when people dont think you're sick. Your boyfriend sounds like he needs to be educated in this illness. Maybe bring him to your next Dr appt and have the Dr explain it to him?
much love
Sara
Prozac has been helpful in our situation (both for my daughter who has the disease and myself you supports her). I think a support system is fairly important. I know that I have done all I can to find out about this disease and how to be a support, but my husband, on the other hand, has not. He hears from me - but has never looked into PsA himself. My husband has always been a kind of "buck up and handle it" person. He has a hard time relating to our daughter's situation and relies on me to listen to you all - synthesize the info - and try to make helpful suggestions to Lauren. We are still negotiating exactly how much to push her and how much to back off. I know that kids can test your patience,but even at 40 pounds, your little one must make most of your days better. I know our five year old does. What a ray of sunshine when we need it. I hope that you are feeling better - it won't happen if you are doing all the cooking, cleaning and caring....you need some "me time". Maybe, break the game system so your boyfriend takes on some of that responsibility for you :) Our older son is a "gamer" and so I know how consuming that can be, But, you sure need the help so you can feel better.
priestesspink said:
Thank you Liz, I am having a really hard night tonight. My body does not match what my mind wants to do. I am still having a very hard time accepting what is wrong with me. For so long I believed that I was maybe lazy and for some one my age I should have no problem looking after two kids and working I use to, I try to think its a mind over matter thing. My hands and feet do not swell very much but they hurt they hurt so much and my neck and ribs and spin are the worst. I don't like to get dressed because it hurts to wear a bra, but yet somedays I move beds around and I go out and am able to play with my kids and be super mom and do dishes and laundry and cook and be able to go to bed with a clean house. Those days however are becoming very few. My boyfriend does not understand at all he works from 5:30 am to 10ish am comes home and either sleeps until 4 or plays video games then goes back to work till 7 then comes and sleeps cause he's tried cause he worked all day. Words can not describe how I feel that he watches me in so much pain but if I don't ask him to help he won't, I wish that he could understand how hard it is to say I can't do it please help me get up why can't he just come help me. It's so hard that I push myself not to ask for help. But I'm not feeling very strong anymore.
I totally understand where you are right now. I am lucky and blessed to have my boyfriend, ex-husband, kids and parents who understand what I go through everyday. I’m not quite sure what I’d do if I didn’t have that understanding. If you need to talk or yell or vent please feel free to message me. I will send you my phone number. My children are 10 & 14 so they help me when I need. If I stay in bed all weekend my boyfriend cleans the house, does dishes and laundry to help out. My mom has RA so she knows first hand how terrible we have it. I had to stop working because my flares and meds make me pretty much worthless. I struggled horribly with what I call the death of my type A mentality. I’ve gone through counseling and I try to look at the bright side. Somedays there just aren’t any ways to see anything positive. I will keep you and your family in my prayers. You are not alone and we all understand! ((HUGS))
Priestess
We do hear you. All of us have experienced, in our own way, the kind of frustration you feel. And many of us are struggling with the depression which seems to come with this disease. Please share those feelings with your doctor: of all the problems we have, this is one disease symptom which can be tackled. And when you do manage to wrestle it to the mat, coping with the rest gets a bit easier.
I’m interested in what you say about feet hurting so, but not swelling much. Same here. I can see the changes in my feet (I look at them and think, “Whose are these, anyway?”), and they hurt. Badly. But anybody else wouldn’t recognize my feet as being swollen. I believe it’s swelling deep inside, pushing against nerves. I know that my MRI showed swelling in my bone marrow. Doesn’t show, but to the “owner”, it sure hurts. Another case of “But you don’t look sick …”.
Good thing you’re here where we understand.
Seenie
You sound like me... I am grieving the loss of my type A personality too.. what a apt way to put it! thanks for saying that.. it triggered an a HA moment.
Josette said:
I totally understand where you are right now. I am lucky and blessed to have my boyfriend, ex-husband, kids and parents who understand what I go through everyday. I'm not quite sure what I'd do if I didn't have that understanding. If you need to talk or yell or vent please feel free to message me. I will send you my phone number. My children are 10 & 14 so they help me when I need. If I stay in bed all weekend my boyfriend cleans the house, does dishes and laundry to help out. My mom has RA so she knows first hand how terrible we have it. I had to stop working because my flares and meds make me pretty much worthless. I struggled horribly with what I call the death of my type A mentality. I've gone through counseling and I try to look at the bright side. Somedays there just aren't any ways to see anything positive. I will keep you and your family in my prayers. You are not alone and we all understand! ((HUGS))
Back a while ago, you were experiencing some difficulty getting adequate treatment, as I recall your docs were concerned about the possibility of an unplanned pregnancy. Did you ever get that issue resolved and on a treatment plan for your disease?
In the meantime, you need to contact social services for some help. IMMEDIATELY they can provide child care services to allow YOU some time to take care of yourself. They can can also get some help for your 2 year old. I mean this and you need to do it. With a 40# two year old some well meaning busy body will call them first. YOU DO NOT want social services knocking on your door first (and they will.) If you need some contacts message me and I can steer you the right way Just your town is all I need. Is there a church who can help you??? being a single parent is dang near impossible in ideal circumstances.,,,
Working split shifts is a bear, but I gotta tell you, its time for a sit down with the guy. It doesn't sound to me like he has any time for you disease or not. Gaming can become a habit sucking the life right out of a relationship with out anyone even being aware until its too late. Please make sure you aren't finding yourself trapped in a relationship because you need to be. As I recall you had a few months of short term disability starting around Sept???
I have not posted on the site at all, but can understand exactly how you feel. I do not look swollen ever. I have had severe hand pain especially when my son was younger. He is three now. I am grateful my husband is very hands on. The only problem is he is gone every other week for work. I have PsA and fibromyalgia. Between the muscle pain, joint pain, stiffness and fatigue it can be too much at times. I work full time and did change my role to cut travel down as it was killing me. It does impact you mentally as you feel limited, tired of complaining about being in pain. Hang in there I hope it gets better
It is hard for people to understand what it is like to be in pain everyday. I did have 6 good months of less pain and fibromyalgia was under control. Since thanksgiving it has been flaring
I am so very sorry you have to deal with this disease. I have two children, and had massive flares after each. I had zero help (family lived very far away, no friends as we had just moved to a new area). My husband worked very long hours (tech industry). I am understating it when I say it was very, very, VERY tough.
Two things helped me at least get a mental handle on things. One was antidepressants. The other was adequate pain management. Once those things were in place, I could focus on managing my disease.
I *really* had to let some things go with regards to housework. My focus was keeping the kids clean, fed, and read to / entertained. We rarely went out, as I couldn't manage both. We spent A LOT of time reading in bed, playing simple games, and watching lots of educational tv. There would be many days I never got dressed, but the kids didn't notice, they just wanted to be with me and that was enough.
Some practical things: have your boyfriend take over ALL grocery shopping, or else get delivery from the grocery store. Many times it is free over a certain amount. I found that going out to grocery shop with kids was my #1 cause of "overdoing it". Get ANYTHING you can delivered or farm out that shopping to your boyfriend. Cut back on any kid activities you feel like you "have" to do, like playgroups or library storytime or whatever it is. Kids are happy to play at home with mommy and a laundry basket. If the activity is not worth the payoff, drop it.
It's tough to give up on things you feel like you SHOULD be doing to be a good mom, but you will be better off in the long run by adding the occasional activity rather than trying to do a lot and not being able to.
(((((hugs))))! My kids are now 12 and 15, and I survived. My oldest is on the autism spectrum, and I homeschool him. I also have pretty active disease. It can be done. Hang in there!
Yes! Please do get in touch with a professional to let them know how you are feeling. Always remember that you have lots of folks here who understand.
Don't try to be a super mom. It's OK if the house is a bit messy. It is extremely to surround yourself with supportive people. Like others have said, take your boyfriend to the doctor with you so he can learn. I've found that the hardest thing for folks to understand is how fatiguing this stuff can be. ((HUGS))
I know exactly how you feel. I have a very active 2 year old as well and a 6 year old with ADHD. It is hard for me to keep up with them. My relationship with my fiance is on rocky ground right now. He works hard to keep our bills paid by doing odd jobs. He has problems with a knee injury himself. He doesn't really understand what I am going through. We have argued about it a lot. He doesn't understand that I am doing all that I can to care for the house and kids. He doesn't understand the amount of pain and stiffness I have. I keep telling myself and him that I am determined to get better and I am doing all I can. I am not taking 9 pills a day for nothing. I am waiting on an appointment to see a dermatologist and will be put on Humira once I get a solid diagnoses. Don't give up! Try to keep your spirits up. I know it is hard, but if you admit defeat, you will be defeated! Never give up!
So sorry your bummed...
I get it when you say you don't look sick. I know a lot of us without visible symptoms go through the same thing. I hope you're having a better day today...
Hang in there!!