Wednesday, May 30, 2012

Is it just me?

By hcastillo Saturday, October 15, 2011

So I have been feeling horrible lately. Lots of pain and fatigue. I know it the long days and stress at work that is doing it to me. But with teaching a 5/6 combo class and having to young children sometimes I don't have the choice. I have to do what I have to do. But is it just me or does anyone else get really frustrated that they can not do things like those your own age (38) without paying for it the next day? I should be able to work and then enjoy family fun night without paying for it later. I know there are others out there with this disease who would be happy if they could do what I can do. I am sorry to those of you who that covers but sometimes I just need to vent. It is times like these that this also takes an emotional toll on me because I start to think about dealing with this for the rest of my life. Don't get me wrong I am truly blessed and typically handle this disease fairly well but i just figure there would be someone out there that feels the way I do right now, not well emotionally or physically. Just needing to know it is not just me:)

10/16/11 1:33am

No its not just you my friend its all how have RA. We all suffer the same symptoms...and they are terrible. It has wrecked my life, pain , fatigue sickly feeling constantly even though on Humira, PLaq & methotrexate. I'll just finished talking with my wife so frustrated.....so frustrated.. quality of life is dismall.. I well I'm just lost to put it mildly.

V, Health Guide
10/16/11 9:40am

RA can be so overwhelming and it affects every aspect of our lives.  I think all of us have been where you are now.  Some of us are there right now, so please don't feel alone or isolated. Quality of life is a big issue. For instance, I just had a talk with my PCP.  She was concerned about how much Celbrex I am taking because of the possible affect on my kidneys.  When I explained that I could not get out of bed without all my meds, she shook her head yes, indicating understanding.  She then came to the point of the matter; it is about the quality of life.   You are young; you are working; you have a young family.  Of course you are going to feel frutrated with your limited energy level.  I wonder if there is anyway you could adjust your work schedule to better accomodate you energy. I find it is necessary to set my priorities every day and then do my best to follow thru with them.  My house chores go undone many times, because my family and church come before house cleaning duties. I can't do it all, so I choose what I am going to do. I know you are young, and you want to do it all, sweetie, but you need to listen to your body.  You need to rest when it is telling you it needs rest. I hope you feel better soon, and please don't feel alone.  We have all been where you are now.

 

Blessings,

V

10/18/11 9:47pm

I am trying to take your advice and rest more right now since my body is telling me to. Frustrating but necessary. Can't adjust my work being a teacher but I do have a housekeeper and will as long as I can afford it:) We have also been using paper plates a lot lately. Sorry to the environment but it is one less thing to do for now:) Thanks for your words of support. Always helps to know I am not alone:) 

10/18/11 9:49pm

I think that is what depresses me and frustrates me too, that even with all these meds I still have problems. Although I was not functioning at all before I started on my meds. I have to remind myself of that but I always gave that level of frustration creep in when I don't feel good and wonder what is the point of all the drugs if I feel like crap. Hang in there. Thanks for letting my know I am not alone:)

10/16/11 10:20am

I totally understand. I teach seventh graders with no real break until the end of the day. I understand the special kind of tired that only teachers get--we have to be "on" all the time. When things go well, I can spend time for myself and with my family (2 teenagers--they are easier). When things don't go well, like my methotrexate being on backorder for over a month, I teach and sleep. At times like this my mantra is "June, July, August." If I didn't have summer break, I don't think I could have taught with RA so long. (20 years total teaching, about 10 of them since getting sick.) I have my students read this short article on RA each year. It does help them understand a bit. http://www.rheumatoidarthritisguy.com/60-second-guide-to-ra/

10/18/11 4:24pm

You are awesome!! Thankyou for all your hard work. God bless

10/18/11 9:42pm

Can't imagine not having meds for a month and teaching. Glad to know there are others out there with our job who know how extremely hard it is to do the job, let alone when you are feeling well. Have been working really hard on coming home and relaxing so I can start feeling better. Thanks for your words of support. 

10/19/11 12:09am

YOU ARE MY HERO!!! thank you for your hard work

10/20/11 1:10pm

We all feel your pain.  Now that winter is upon us things will just get worse.  At least it does for me.  I keep thinking about going out on SSD but would like to hang in there at least a couple more years.  I was on STD for 2 months and it was great.  Went to aquatics twice a week in a 94 degree pool.  It was AWESOME!  I'm now seriously thinking about getting a hot tub.  You can get it tax free if you get a doctors note.  They're not cheap but the relief from pain is worth it.  You might want to ask your Rheumy for aquatics physical therapy and see how it works for you.  Like everyone else, get lots of rest ... but not too much, it can make the pain worse.  If you have Netflex they have a great Yoga workout for pain management that is about 35 minutes long that is VERY low impact.  More meditation and stretching that hard core yoga. 

T

Lene Andersen, Health Guide
10/20/11 7:33pm

the way I see it, there is no "competition" about somebody who gets to win because they can't do as much as you. Frustration is about what happens in the context of your life. If you used to be able to teach all day and then have an evening with your family and get up the next day and do the same thing, then not being able to do it without being exhausted is reason enough for frustration. Vent away. That's what we're here for.

 

that said, what helps you get to the place where the frustration is less - and mostly because frustration takes up a lot of energy you could be using on other things - getting rid of the idea of "should" can be your friend. it is the "should" that makes you look at your life and see only what you don't have. And sure, you absolutely have to process the feelings, move through the grieving of your loss of health. Eventually, though, the only way to stay sane is to find a way to acceptance.

 

Energy management is a challenge for most of us - the difference between what we can do and what we want to do can be substantial and frustrating and make you want to bang your head against the wall. The Spoon Theory  is a fantastic idea about energy management that puts everything in a much more practical context and can help you skip over the "should" and into learning how to conserve your energy and prioritizing what is important enough to spend it on.

 

you can learn a lot of coping skills and tricks to work around your limits and your frustrations, but every now and again, it still hits you. And that's why we're here. To tell you you're not alone. I'm very glad you found this site. Welcome to the MyRACentral family!

 

 

Anonymous
LADYBAJA
10/23/11 8:54am

I like you, have been suffering 24/7 this disease, and severe osteoarthritis of my spine, and spine cord injury..yes, is a prison like feeling, you dont feel normal..some days are worst than others..i have never slept more than 4 hrs, since 1991..i had an auto accident, that broke my spine, in 3 parts and my neck, and i was in a coma for 13 days...but iam a walking miracle of faith and modern medicine..i put myself thru experimental proccedures so i can walk again...i lived for 13 days paralyzed from my neck down...but thanks to UCSD, I AM WALKING AGAIN..yes the pains have grown into intensive pain, excruciating sometimes to the point of ending it all...but, for some reason, iam still here, pains and all, and i have cope, sometimes, against all odds, to live with these pains, being isolated from a normal life, feeling like an outcast, feeling like iam the only one, but iam not...there are millions of us, suffering from pain, 24/7, chronic fatigue..i know the feeling, tired of feeling tired...but, all i can say, is make the best of what you got..look for support in any shape or form..religion, people, family, friends,,vent out..cry out...do whatever it takes, to feel you are not alone, cause you are not...iam know what you are feeling, and then some....ive lost a 25 yrs marriage,jobs, and friends to PAIN....a big price to pay, but..IAM STILL HERE...FOR A REASON...

 

take care and hope you find some relief physical and emotionally....you are not alone...

 

 

take care...

 



10/23/11 11:40am

Lady,

My heart goes out to you stay the fight we all here know exactly your sufferings. We are here to lend a hand ---VENT---. God I pray to you to bring Ladybaja peace and comfort free of pain so that she can gather her strengths to fight the fight. Lord I pray that you bring her peace of mind so that she can continue the Lords way. She is your instrument we are all your instruments of inspirations and at times need you my LORD. Please I ask that you ease her discomforts so that she can continue on your works. I pray to you my Lord and savior, it is written "ask and you shall receive." amen.

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By hcastillo— Last Modified: 10/23/11, First Published: 10/15/11