Lately I am finding myself on edge constantly and not having the patience I used to for my husband, my students and myself. I understand the pain plays an effect in this and since I also have blood pressure issues, it is important for me to keep things in control but things are getting harder to deal with lately. As much as I try to keep things under control, things are snowballing and honestly, I do not know how much more I can handle. I love my family and I don't want to take out my frustration on them. I guess what I am asking is for advice on how to handle the anger and frustration that occur with this disease.
Sorry to hear that Spinning Diva. I understand fustration and family issues, my son is ADHD and is too much for us to handle. Some of the ways I deal with my fustrations are doing the grocery shopping by myself after my kids goto bed. Not a lot of people are in the store and I can take my time. After groceries I've gone for small drives down to the lake to sit there and relax. Another thing I've done is have a relaxing bath when everyone else has gone to bed. I also do breathing exercises, a couple minutes of that can seem to calm the mind for hours. Hope you can find what works best for you.
I so feel your pain there Spinning Diva. I struggle with the same issues. It seems as though my fuse can be so short when the pain is ongoing and relentless. My attitude, which was once positive and altruistic, can be so dark and foreboding. In the past I have found solace in a daily meditation. Even this can be a struggle in the worst of times. I often worry about the effects on the people around me and how it may change their feelings for or about me. I have had some very dark days as of late, but I will not be undone! I just keep reminding myself that it is ok to feel this way, but to not let it become my norm and to not let it be the way I label myself. I try to keep a positive outlook that, at the very least, there will come a time when I can regain my altruism, if only briefly, and I will maximize the benefits of that time. I will use the good moments to power through the bad. I have to accept that sometimes I am going to be on the dark side of things and that is ok, but not let myself dwell there any longer than absolutely necessary.
I try to treat myself to as many good attitude adjusters as possible. Long, hot showers, enjoying a relaxing cup of tea, or whatever may give me a chance to re-energize my inner-being. As for my temperament with those close to me, I try to take the positive times and reassure them and try to explain my condition and ask for them to take these things into consideration when they are being effected by my negativeness. I also find it helpful to not only thank them for their patience, but to thank them for the gentle reminders of those effects I am having on them and their lives. It can help to keep my own problems in perspective.
Namaste and much love to you and yours,
Ron
Hey there Diva,
Sigh. I hear ya. It's so hard to be cheerful (or patient, or even pleasent sometimes, lol) when your hurting and things seem to always be looking down rather than up. I don't know how qualified I am to give any advice on the subject, but there are a couple of things that help me:
Do you have any pets? My dog and my horse are magic. Seriously- they keep me in the moment and my blood pressure just shoots down to a manageable place. Nothing seems to relax me more than spending time with them. Ditto hot showers/baths and the solo trips to the grocerey store (I thought I was the only one who found solace in that!!). Writing out your feelings in a journal, having a heart to heart with someone who loves you, doing a hobby that you enjoy, or helping others all help the blood pressure as well. For me personally, prayer is something that I need. My faith is a huge part of my life and talking to God puts all things in perspective.
All that said, there are some days that slamming doors, stomping my feet (gingerly!), and putting both kids in a time out are pretty much the only way to deal, lol.
Wishing you a very happy and peaceful day!! {{hugs}} and Blessings
Dearest Diva,
I don't know what to say, except that I so totally understand. I was diagnosed after I retired from teaching, but looking back on it, I suffered from pain and fatigue (and from being short-tempered, impatient, and generally no fun) for many years before that. It took literally years of suffering before the doc referred me to a rheumatologist. Then it was "You have PsA, and here's what we're going to do ...". I was shattered.
After getting over the initial shock, I think it became easier to accept and understand my pain, once it had a label to put on it. Before that I just felt like a lazy, cranky, complaining loser. I think my doc must have seen me the same way. What I find helps me most is focusing on the things I CAN do. My feet are extremely painful. But I can keyboard. I can talk to friends. I can read for pleasure. I can use my scooter to go shopping. (I fought the scooter thing -- wasn't resorting to that, oh no, not me -- but I have to admit that it has liberated me mentally as well as physically.) I can cook, as long as I sit down most of the time. I can "scoot" the dog. Yes, I can.
I do admire the people on this board who manage to work and look after families while wrangling this nasty disease. I think you should see everything you manage to do as an accomplishment and a triumph. Resolve to be proud of what you manage to do despite your pain, instead of weeping over your limitations.
As for the things you cannot do, I'm going to drag up our moderator Nym's graceful turn of phrase: radiant acquiescence. For me, those two words have transformed bad days into OK days, and feelings of inadequacy into acceptance of my limitations.
And, of course, there's always hope for better days ahead.
All the best to you.
Seenie
Hubby and I have been discussing marital issues today and so far have not been able to resolve anything. Everything is coming to a head and I have found out even more bad news and things are not looking good at the moment. I am considering leaving as nothing I do is good enough for his family and the only resolve I can see to make his life somewhat back to normal and is to move out. Everything is falling apart and I have no idea how to fix it. He is complaining about how much time I am spending on here and I try to explain what I am dealing with and it is not getting through to him. I did think he was getting it but now I don't think he is. I am always standing up for him and standing with him but when I need his support, he just rolls over and I am alone again. I started to 'fix' the issues his family had with the house but now my right hand is so swollen that I can't see my knuckles but that makes no difference. I am just a housekeeper and cook, not a real person or anyone who matters anyway. Life sucks right now.
Hi there Spinning Diva....I have been in those shoes, fairly recently I might add. Is there anyway that your husband would agree to go with you to counselling? We did this and found it very helpful with our communication and getting issues out on the table. As much as it sounds appealing to you to move out, you really need some support with this disease (assuming that there are no issues with abuse or anything like that), and it may be something that can be worked through with the guidance of someone that is familiar with navigating through these issues, like a marriage counsellor. I know some medical plans cover this if finances are and issue, or some church groups have programs....I would suggest talking with your husband to see if he is willing (assuming you are willing?) to give counselling a good try before ending everything. I have been in your shoes, and can tell you that it can be really helpful in working through issues...we are still happily together (still have to work on things, but are both committed to doing so!)
All the best,
Dani
Hi, Spinning Diva
Been there. I have a friend I met on another arthritis site. We've been communicating via email for about 10 years now. I imagine she knows more about me and my problems than any other person in my life--including those I live with. We call what you are dealing with "slipping into the black hole." I wish I had some magic that would life turn around. But one thing is for sure: Although I understand your feelings completely, and have probably said the exact same words, you ARE a real person who matters! You are more than a housekeeper and cook. Depression is often anger turned inward. Try to keep that anger directed away from yourself. You are your own strongest ally!
Hugs, Spinning Diva!
It's so difficult to handle things properly when your life is seemingly spinning out of control.
For me, I find that the more I'm trying to control things, the more out of control I feel. The more I acquiesce to the way things are and find the good in them, the better I feel about myself and the better I treat myself and others. It's not easy to change the way you think about things, but it's possible.
What is the one thing about your relationship with your husband that's bothering you the most? Phrase it in a way that doesn't put anyone at fault. Is there anything the person can truly do about it, or is it just something inherent to the person or situation? Is there anything you can do about it, or do you just need to accept it for what it is? For example: My husband doesn't understand my illness nor does he give me the support I need. He could do more research about my illnesses and do things to make my life easier - however, he's not the type to research things and is not very intuitive when in comes to other people's needs. There is something I can do - I can, in short conversations, clue him in as to what I'm dealing with with my illnesses. I can treat him with respect and understand that he cannot every truly understand what my life is like, because he's not in my body experiencing the pain I'm feeling. I can ask him to do things for me, since he's not good at figuring those things out himself. I can accept that I cannot change him, his reactions to things, etc. but can open my eyes to the ways he does show me he loves and cares about me, even if they're not the things I expect him to be doing. I can realize my expectations are based on what I would do in the situation and that he is not me.
Many times my own frustrations stem from my own perceptions of what I need, and many times, when I say out loud just what it is that I need, I realize that it's not really what I need or that I'm asking for something completely unrealistic. The other day I said to my husband that I just needed him to take care of me. He said he does take care of me and asked what specifically I need from him - as I was thinking about what it was I needed from him (to give me more down time, to look around the house and see what needs to be done and do it without being asked, etc.) I realized how unrealistic I was being. For one, I can't have more down time because of our busy schedule, and our schedule is my responsibility, so if I want more down time, *I* need to work on that. Secondly, my husband is not capable of meeting my second "need" - he needs a list of things to get done. I also thought about the things he does for me - in part: gets me my meds, water, and a heating pad every morning; gets up with the kids every morning; takes care of our five kids plus the kids I babysit some mornings so I can run errands alone; picks up dinner on his way home from work or cooks me dinner when he gets home from work on my really bad days; is open to me taking all the time I want or need to myself on Saturdays, and so much more. What I realized is that what I need is a break from PsA, AS and celiac, as they've consumed my being and I'm just completely overwhelmed - and of course that's not a possibility. There's really nothing anyone other than myself can do to deal with how overwhelmed I feel, and when I'm feeling this way, nothing anyone tries to do is going to be good enough because in the end, I still have PSA, etc.
I'll stop babbling now.
Thanks for all the support. I try to be positive but sometimes it just doesn't work. We've been under a lot of pressure around here and I think hubby and I are taking it out on each other. Things seem to be better since Sunday but we are checking into counseling and trying to work things out. Of course it didn't help my PsA any either. The stress always makes it worse for me and I've been hurting ever since the funeral (too much standing there and too much sitting to and from it). Again thanks for all the well wishes and advice.
Hi Spinning Diva, I was just thinking about you and wondering how you are getting along. A lot of standing is so hard for me. I pay for it for weeks. Funny, but walking doesn't seem to be as bad as just standing around. Remember to take care of yourself. It's easy to let that slip when you are so stressed. I know it sounds simplistic when you are facing so much, but doing the smallest things for yourself can make a huge difference. An extra five minutes in the bath to relax, something YOU like for dinner, a phone call to a friend. It helps you to remember you are worth it...and you are! I hope you are feeling a bit better tonight. Stay in touch.