I REALLY need people to QUIT calling me lazy!

Many of you know I have only been recently diagnosed with PsA. Looking back I can see that I have been suffering for more than 10 years with all my pain being blamed on other things: overweight, not enough exercise, etc, etc, etc

Since my diagnosis, I have begun listening to my body. When the pain is bad and I'm exhausted, I rest now. I take my meds like I'm supposed to, have changed the food that is allowed in the house so we are eating much healthier the last few months, and am scheduled to start yoga next week.

On top of this my husband has his own disability: intractable migraines, anxiety, depression, and what I think is fibromyalgia. I take care of everything for him, since in one form or another he is usually unable to do it. My parents are also disabled and require ALOT of time and attention from me. I typically make and take them to ALL of their appointments, make sure all their bills are paid, do all the errands and grocery shopping, and often even clean house for mom. Once all of this is done, I still have my house to take care of, and lets face it, with 3 of my own dogs and 1 I am watching for my best friend while she is in Europe, there is LOTS to clean. I recently (unbeknownst to my family) dropped out of school this semester. it was just to much for me to deal with. I am currently an LPN, and was working on my BSN, way to much work with everything else going on.

Anytime someone see's me sitting down to rest or watch TV, people think I have been doing it all day. Just because I don't do something for my parents doesn't mean I am sitting on the couch watching TV all day (If I were able to pull off a feat like that I should be no ones business). If I am not doing something for my husband does not mean I don't love him, it just means I need a few minutes to rest first. Just because I am not doing any of the multitude of things that need done around here, and have found a moment to rest and take care of me for a moment, does not give my in laws a reason to call me lazy. If I want to take a nap or sleep in till 10 am since I didn't fall asleep until after 5 am, they should all be supportive and not condemn me for it.

I have this disease that I thought my family understood and would be compassionate about, especially since my dad has been suffering with PsA for over 20 years, was I ever wrong. I realize, all of my hardships have been experienced by my parents. Many of them while they were working a full time job, in school, had kids, etc.

Even if I was physically able to work right now, there is no way I would have the time. The expectations of my ENTIRE family is WAY over the top. I am often overwhelmed and dream of running away to a place where no one knows my name (hahaha, they would still call me on the phone).

I apologize for the length of this, I just had to get some of this off my chest, and no one here would understand.

It's very understandable. Here's something you may want to consider. . . You are giving care to quite a few people. Have you considered getting support for yourself? Whether it's an online support group or (even better) an in person support group for caregivers, you are in a really tough situation.

It would be tough enough if you didn't have your own health concerns, but with yours on top of everything else, you definitely have the right to take a break, and seek your own support.

I have thought finding a support group, that's what led me to this site. I also looked for an in person support group, but have not found anything locally (we live in a rural area).

Looking back now, I can't believe I was able to do all that I do while I was doing my classes for my LPN (and I was suffering from symptoms, just didn't know what they were at the time).

I am getting better about at least trying to get some "me" time the last few weeks, which for some reason has been particularly bad. I often feel guilty about it, but I have to do it. I keep asking myself, if I don't take care of myself, who is going to take care of everything I do. That answer is always no one.

Thank you for listening! It really does help to get it off my chest.

Glad to be of help. Definitely consider seeking out a caregivers group, even if it is online. You have a lot on your plate.

Hi, sorry you haven’t been getting much understanding, let alone help…you are doing the right thing, sometimes we have to work on being gentle on ourselves before anyone else picks up on the idea that we need rest and consideration. You do deserve a rest, you do deserve to sit a while between chores and don’t let anyone tell you any different! The guilt bit is hard to overcome but it gets easier with practice, good luck x

Thanks for the support guys. I feel better now that I have gotten that off my chest without condemnation for how I feel. This whole taking care of myself is a new thing for me. As the family caregiver and the nurse in the family it makes me feel bad that I can't be there for them like I have been in the past years. However, I am learning, if I don't slow down and take care of myself there won't be good days to take care of them. I know this disease can progress rapidly, and with the joints that are increasingly painful as the months go on, I am praying we find a med and dosage soon that will help. I would like to do a few household things without this much pain (especially my twisty, bent, swollen fingers).

There’s a really useful phrase you might want to repeat to yourself to fend off those feelings of worry about what you imagine or what others really are saying about you. “What other people think (about me) is none of my business”.

Sorry you’ve been having a hard time. Seems to me you’re running everybody’s life and running yourself into the ground along the way! Take a break. Bonbons. Sofa. Enjoy.

It's amazing, isn't it, how getting it off your chest can make you feel better. You are not lazy: you need to lie down until that feeling goes away!

I went for years blaming myself for my lack of energy, my chaotic domestic disorganization ("My house never used to look like this!"), my mood swings ("I am such a ...") and my general lack of ambition. When I was finally diagnosed, I realized that all of that was a direct result of PsA: on reflection, the PsA symptoms and my perceived shortcomings etc. all started to develop at once.

Things are getting a bit better for me. I'm still having a hard time not blaming myself for all the things I can't do, but I'm working on it. I really like what you said about needing to look after yourself first, otherwise you won't be able to take care of those that need you. Hey, that's kind of like the safety announcement in the airplane about putting your oxygen mask on first, before helping those who require your assistance! LOL

I'm sorry you are dealing with all that.

I've gotten to the point where I can joke about it. My husband will leave for work, and I'll be on the sofa. By the time he gets home (after 7:30pm) I've had a full day and am back on the sofa. I used to say things like "I just sat down! Really!" but now I just say "yup, haven't moved since you left this morning", making a joke out of all the time I need to rest.

Sometimes I do the minimum. . . .wash dishes, clean up visible mess, and that’s about it. Sometimes it’s all I can manage.

Nascarfilly, you sound anything but lazy. So much to deal with. There has already been so much good advice. The one thing I would add is that you may consider some new strategies rather than trying to keep it all going yourself. It has taken me time to realize there are other ways to do things. For example, I now ordered groceries online and had them delivered. I have paid for fluff and fold laundry service (I rent & have to use a laundermat). My point is that perhaps there are ways to get help, to offload some of your burden that you may not have considered. I hope you find some strategies that allow you more rest. You certainly deserve it.

AMEN. We all need staff!



dandlyons said:

The one thing I would add is that you may consider some new strategies rather than trying to keep it all going yourself.

I know exactly what you mean Nascarfilly. I struggled every night with hours of suicidal depression because my family has, to put it bluntly, decided I no longer have any vote or authority or even an equal say any more because of my brain fog days. My husband screens the phone calls on the house phone, all plans are made when I am otherwise occupied and they insist I have Alzheimer's. Since I no longer am able to work I am virtually isolated because I live five miles form the nearest town. I am doing baseline memory testing again as soon as the Neuro gets scheduled. Second time around for me. I am doing this of my own accord so that I have the final say one way or the other. I am a ghost in my own household that is also expected to somehow still be the maid,chef and laundress and head of household financially.

My husband is disabled and he really does need a caregiver but I can no longer be that person. I actually called Social security and told them "I quit, find someone else, I am to ill myself to continue." (They helped me file for my disability and cover my medical insurance,but I have no idea when the administrative law judge will make a final decision. I have been waiting six months already). He calls my PsA, AS and cluster migraines with suspected glaucoma (my little arthritis thing). I get so pissed when I cannot attend an event because I cannot drive at night at all or I am exhausted and cannot move my legs because of the burning ache and weakness. I sort of understand why they get this way because I force myself to move and do. I have times of day when I am almost normal and then wham ,it hits me like a brick.

Half of the doctors I have seen note in my chart that "Patient appears vigorously healthy" Of course I do, I work at it! It isn't easy either when I'd rather puke than go for a walk. I hate peeling the scales off of my feet and hands so that they don't build up and look horrid. People think it's leprosy or some such nonsense. No one seems to understand how fighting the itch all day can make you exhausted as well as crabby. I always remind them how much they moan about one little mosquito bite.

I tried running away, it did no good, things just got worse actually. It was a nice quiet dream though while it lasted.:) I learned I will lose some people in my life and I have most definitely gained some( thanks you guys). Each day I try to take it as it comes. I just picture my newest granddaughter and keep the memory of her warm little cheek touching mine in my mind when I am needing the suicide line. I pray to God every night that none of you are fighting this mental fight. Keep up the good fight and I love to hear how you are doing. It gives me someone to focus on other than myself and we all need that once in a while:)Cowgirl up, nascarfilly, you are awesome. I'm always glad to see your screename on my email.

WOW. You ARE Wonder Woman, and I don't care what anyone else says! But even super heroes need someone to help them out sometimes. Don't think of your rest times as "time I should be doing something else," but rather as time you need to combat the symptoms of your illness. If you had a fever of 104, you would take meds, drink lots of fluids, and get plenty of rest, right? This is absolutely NO different!

You might try printing out and encouraging your family to read some of the other stories that are here on this site. DON'T encourage them to join also, or you won't have anywhere that you can vent, and venting is a critical outlet. Maybe if they read some of what all of us are going through they will begin to understand that you are doing everything that you can...and also that your level of assistance to them may decrease in time because of the progression of PsA. In law relationships can be tricky under normal circumstances. I got lucky with my in-laws, but they sometimes get frustrated with my limitations even though they are terrific people. I made a conscious decision that I would not let them (or anyone else) dictate who I am or what I am capable of. Only I know which days I can do more than others.

Finally (and I'm so sorry if this sounds like a lecture...it is not meant to whatsoever), remember that stress=flares. The more stress you are suffering from, the worse you will feel. Find a healthy outlet for your stress...needlepoint, underwater basket weaving, meditation (the yoga sounds like an excellent option), whatever it takes. I'm so glad you posted this. Think of us as the brothers and sisters you wish you were born with. Vent, be angry, be frustrated, its ok. We will listen without judgement and with compassion and caring. We will also be on here at some time or another venting as well. Take care of you!

I am so sorry to hear that along with everything else you struggle with suicidal depression. Just because you are ill doesn't mean you are not human and have human rights and feelings, how dare they take that from you! Although, I will admit, when my mom has "brain fog" I used to jump in and take over for her and dad. She also had anxiety of spending money so would not pay the bills, I had to. I never took away her vote or her authority though. She is still "mom" in whatever capacity she has at that moment. The last week or so, she has been the worse one with making me feel guilty for taking me time. I am learning to just let it roll right off my back. She can only hurt me when I allow her to. My dad understands this disease, but thinks I should be able to function thru more because he did at my age. What he fails to mention is he also had the driving force of PTSD pushing him to not stop. He was always one of the hardest working men I knew. I had a heart to heart with my mom in law the other day, and think I finally made it thru to her (her sister has RA or PsA, they are stil trying to determine and she couldnt remember which one). Once she saw how her sister was struggling, it suddenly became clear that I was not just saying things anymore. She related them to someone else now and we both feel the same. My rheumy suggested I file disability while we get things under control, so I am finishing up my app this week and getting that sent in. Would be great to add to our income as we are living on hubby's disability right now. As for my issues with hubby, i think when he saw the xrays today he realized how much pain i was really in (more comming in a new post). He actually said on the way home, he understands much more about my pain level now, and he will not say anything about me not being able to do as much. Even said he will try to help more as there will be several things going on for me over the next 8 weeks (sorry, more in the comming new post).

Have you tried checking with your local social services department? They may be able to help you guys out with someone to come into the home to help take care of both of you. Even if its only a few days a week for a few hours, it is better than you have now.

I can't believe I landed what seems like a great rheumy off the bat. I saw him again today, and will be doing an updated post for that ;-) He actually listens, doesn't dismiss my pain, talks about the "game plan" with my and hubby, and is activly trying to help my pain level.

Ahhh the grandbabies love ;-) its like puppy love, it cures everything ;-) I skipped being a momma to human kids and have my 4 legged babies. However, hubby has a daughter who just got married last year. She is not a step mom to a girl that is the age she was when I met her dad. The curse worked lol she also has a 1 year old daughter and a 7 year old son. Her daughter is already just like her ;-)

;-) Thank you for the kick in the rump I needed. I definately pulled up them boots today!! Between 2 dr appts, driving 5 hours and a trip to walmart i am both exhausted and in some hefty pain. Hoping the new meds will arrive before the weekend!

Take care of yourself and don't let that family of yours knock you down. You deserve to be treated better than that!

God Bless

xxoo


crazylady said:

I know exactly what you mean Nascarfilly. I struggled every night with hours of suicidal depression because my family has, to put it bluntly, decided I no longer have any vote or authority or even an equal say any more because of my brain fog days. My husband screens the phone calls on the house phone, all plans are made when I am otherwise occupied and they insist I have Alzheimer's. Since I no longer am able to work I am virtually isolated because I live five miles form the nearest town. I am doing baseline memory testing again as soon as the Neuro gets scheduled. Second time around for me. I am doing this of my own accord so that I have the final say one way or the other. I am a ghost in my own household that is also expected to somehow still be the maid,chef and laundress and head of household financially.

My husband is disabled and he really does need a caregiver but I can no longer be that person. I actually called Social security and told them "I quit, find someone else, I am to ill myself to continue." (They helped me file for my disability and cover my medical insurance,but I have no idea when the administrative law judge will make a final decision. I have been waiting six months already). He calls my PsA, AS and cluster migraines with suspected glaucoma (my little arthritis thing). I get so pissed when I cannot attend an event because I cannot drive at night at all or I am exhausted and cannot move my legs because of the burning ache and weakness. I sort of understand why they get this way because I force myself to move and do. I have times of day when I am almost normal and then wham ,it hits me like a brick.

Half of the doctors I have seen note in my chart that "Patient appears vigorously healthy" Of course I do, I work at it! It isn't easy either when I'd rather puke than go for a walk. I hate peeling the scales off of my feet and hands so that they don't build up and look horrid. People think it's leprosy or some such nonsense. No one seems to understand how fighting the itch all day can make you exhausted as well as crabby. I always remind them how much they moan about one little mosquito bite.

I tried running away, it did no good, things just got worse actually. It was a nice quiet dream though while it lasted.:) I learned I will lose some people in my life and I have most definitely gained some( thanks you guys). Each day I try to take it as it comes. I just picture my newest granddaughter and keep the memory of her warm little cheek touching mine in my mind when I am needing the suicide line. I pray to God every night that none of you are fighting this mental fight. Keep up the good fight and I love to hear how you are doing. It gives me someone to focus on other than myself and we all need that once in a while:)Cowgirl up, nascarfilly, you are awesome. I'm always glad to see your screename on my email.

oohh tmbrwolf329 do I have you fooled ;-) not a wonder woman in site, just this young / old woman lol

I am working on that guilt thing, it is ingrained deeply and is gonna take some time to get out (mom is the best one to make me feel that way).

For the most part my inlaws are wonderful, and I couldnt ask for better. I am generally treated like I am one of their kids (kind of am in a way lol). My mom in law is beginning to realize what is going on and I am not just saying things, so that really helps. I have started doing WAY less for everyone except me and hubby. There just isnt enough enery for more than that right now.

;-) I didnt see it as a lecture, simply another notch in my belt of info and ammo for myself. Baby steps, but im getting there. I cant tell you the feeling I had when you said I had brothers and sisters here ;-) it is so true!! Its interesting how we can listen and be there for others, but people in our own family can't treat us the same (my sister and I ususally only argue).

Thank you for the words of support and comfort ;-) and know that I am here when it is your turn!

gentle hugs


tmbrwolf329 said:

WOW. You ARE Wonder Woman, and I don't care what anyone else says! But even super heroes need someone to help them out sometimes. Don't think of your rest times as "time I should be doing something else," but rather as time you need to combat the symptoms of your illness. If you had a fever of 104, you would take meds, drink lots of fluids, and get plenty of rest, right? This is absolutely NO different!

You might try printing out and encouraging your family to read some of the other stories that are here on this site. DON'T encourage them to join also, or you won't have anywhere that you can vent, and venting is a critical outlet. Maybe if they read some of what all of us are going through they will begin to understand that you are doing everything that you can...and also that your level of assistance to them may decrease in time because of the progression of PsA. In law relationships can be tricky under normal circumstances. I got lucky with my in-laws, but they sometimes get frustrated with my limitations even though they are terrific people. I made a conscious decision that I would not let them (or anyone else) dictate who I am or what I am capable of. Only I know which days I can do more than others.

Finally (and I'm so sorry if this sounds like a lecture...it is not meant to whatsoever), remember that stress=flares. The more stress you are suffering from, the worse you will feel. Find a healthy outlet for your stress...needlepoint, underwater basket weaving, meditation (the yoga sounds like an excellent option), whatever it takes. I'm so glad you posted this. Think of us as the brothers and sisters you wish you were born with. Vent, be angry, be frustrated, its ok. We will listen without judgement and with compassion and caring. We will also be on here at some time or another venting as well. Take care of you!

Here’s a phrase I’ve been telling myself lately: Don’t walk a mile for people who wouldn’t walk ten feet for you. I too am always taking care of others because I feel it’s my duty and I don’t want anyone to think ill of me, but I AM ILL. Nobody takes care of me, so I need to do that. I’m not saying you shouldn’t care for others but it sounds like they aren’t even appreciative of what you do if they think you are lazy. A few weeks ago my law partner told me she needs more from me- more hours, etc. and I said no- I quit if you want more. This is all I can do. I reminded her that just because I don’t share every yeast infection I get from antibiotics, every time I have diarrhea from a new med, etc. does not mean I’m well. Just because I look we’ll doesn’t mean I am. I said look- I have nearly run myself into a hospital bed trying to please you, so if this isn’t enough, I am done. She apologized and we are trying to move past it. I know she wants more from me and I may ultimately have to leave because of it, but you can’t keep worrying about what other people think you should be able to do. I explained that pleasing others is important to me so if after everything I have endured to work while fighting this disease, it still is not enough- if my best is still a disappointment- I am done. I’ve never disappointed before so this illness has forced me to create new expectations for myself, based on limitations I cannot ignore. Believe me, I tried. I spent 9 months in pain management prior to formal diagnosis and hid it from my husband because he thought I was lazy and I wanted to prove I could keep up. I finally swelled up to the point that medications did not work, broke down, and came clean that I was hiding my illness because I did not want to be thought of as lazy and at that point no one had figured out what was wrong with me. I have to keep reminding myself that before I was sick, I put myself through law school with a newborn while my husband was deployed, while holding down a job. SO I know I am not lazy. Yet I keep questioning myself when I feel like others question me. I know I need to take my own advice, but don’t let others’ expectations snuff out your spirit. They could understand if they wanted but they just don’t care. They only see what’s in front of them. They don’t peel back the layers because they are selfish. Do not waste your energy on these people. If you feel an obligation to your parents then of course you should help them, but don’t put up with anyone making you feel less. Flares are bad enough on their own.

don't feel bad because you are tired. you are sick. i was there too :) now i am my own person. so if you want to just sit and do nothing (hey, sitting is actually doing something) just do it and if someone asks, just say "because i can". i don't give excuses when i am tired. there is no point. and i "trained" my family to accept that sometimes i need a break from husband, 4 kids, 4 cats and 2 dogs :)

you should be able to have a break too without feel guilty.

good luck.