Caregivers Don't forget to care for yourselves!

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Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
Please take care of yourselves, don't forget or put it off for another day! make the time it is so important!

check out the stats on NFCA (national family caregivers association).

I forgot about me! I wish I took the time to sleep a little more, eat 3 meals a day, relax, meditate, read, exercise, I wish I had asked for help more often, or accepted it more often!

PALS demand that your caregivers take care of themselves!
 
Thanks so much for posting this ......sometimes it is so much easier said than done. I think my biggest problem is that I feel guilty leaving my hubby so that I can have "normal" time. Nothing with this disease is normal. I try to have my normalcy in 1 1/2 hour spurts. That is abouthow long I can safely leave my hubby alone. People keep telling me and suggesting that we can in home care. I am physically able to help my husband and I feel that this is all I can do to help him..and maintain his integrity. I have breaks when his sisters come, because they will assist with feeding and toileting. Then the balancing act of having two young boys.....we were an on the go family. I do notice that I am a better wife when I have a break..they are just few and far between. Believe me...I am not complaining...I feel fortunate that I can help my husband.....we make a pretty good team in this big mess. I think I will try to get out for a walk tomorrow...and enjoy some of the warmth coming our way.
 
I have heard this advice a lot, but it is so true. It's hard to care for someone else if you are exhausted or sick. Plus, none of us knows how long we will be on this earth--I have been caring for my mother for well over a year, and it wasn't until recently that I finally realized we have to "move on" with life as much as possible, in spite of the hardships of this disease.
 
My husband was diagnosed in November of 2003, it hit us hard, three months after the birth of our second daughter. I forgot to care for me... I felt like I was in a dream, this could not be our life! I still feel that way, it is such a devastating disease. I went into a "do" mode, doing all I could for my husband and children, I forgot to "do" for me, I was lucky if I had one meal a day, or if I got adequate sleep, I was just so busy. Now that I look back, I think that was how I coped, just staying busy. Being so stressed out, I was not good too me, I could of been more relaxed, it really wouldn't of changed anything! Now I have been diagnosed with a B12 defficiency (ironic, that is what they originally thought my husband had) and I have Graves disease, an autoimmune disease, brought on most often by........: STRESS.

Stress is definitely a factor in autoimmune diseases (there are over 80 autoimmune diseases). Researchers have identified hormonal and cellular changes that occur in our bodies when we are under stress. Chronic stress is thought to be worse for our immune systems. When our body perceives an attack, we go into attack mode, often referred to as the "fight or flight" syndrome. This response to acute stress could be a lifesaver. However, after a period of chronic stress, our bodies can't keep up the fight and may produce less of these hormones leaving our tissues vulnerable to inflammation and disease.

I was in "fight or flight" mode throughout the last 5 years... no wonder! Today I go see the endocrinologist, hopefully to get all my symptoms under control, my husband is stressed out about my problem, he is worried about me and consequently the kids. There is no cure for Grave's disease, although it can be controlled, Grave's is not what worries me, what worries me most is trying to make the changes in my life that reduce the stress, and now after 5 years of running in circles, can I do it? Can I take all this negative and turn it into something good? Is there something good that comes of all this?
 
Funny that you mention stress as a factor in autoimmune disease... I was diagnosed with rheumatoid arthritis recently (I'm 24) and a few months after hearing about my mum's diagnosis with MND. the 6 weeks/2 months that I researched MND and my mum's symptoms was very telling on my body. even new bit of information i learned and could link to a symptom mum had felt like a body shock. one night after i'd sat up on the computer for 8 hours straight researching, i literally couldn't stand on my feet as my knees were totally gone. the pain was unbearable. it took me 15 minutes to get off the seat! thankfully my condition can be controlled with medication and painkillers, so i'm not really in a position to complain even though some days are more painful than others. but on the painful days i feel so depressed and useless because i can't be of better help to mum.
 
I remember all the late nights on the computer! On the painful days, use it as a reminder that you need to take care of yourself! GUILT FREE! and you can complain... it won't get you anywhere, but you can have bad days too! Even the best, angelic, caregivers feel guilt! You can only do the best you can! Your mother is lucky to have you!
 
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