I learned one year ago that I have an autoimmune disease called Rheumatoid Arthritis. My immune system is attacking my own body instead of the bacterias it should. It is in a constant state of war.
Since my body has turned on itself, I have been in constant pain and severe exhaustion. I told myself when I was diagnosed that I could be strong, and not let it effect my life. It is. No matter what I try, I feel like I am fighting the impossible.
I struggle to juggle my life. In fact, I have not been able too for a year. I struggle with work, my kids, my husband, housework, errands, my emotions, and my health. I work 40-47 hours a week. Currently, that wipes me out and I am barely able to do any more. I do what I have to for my kids. Yet, even they miss me. They miss that I cannot rough house, run around, dance, sled, ski, even get on the floor and play. I am physically so exhausted I have to give myself a pep talk to move at night. I lie as still as I can because everything hurts any movement is a trial. My husband is missing the "old" me, the one that would take care of everything, making sure it was all done and was like the energizer bunny. He misses that"his" time is gone. I hate that RA is making me exhausted, cranky, and an overall bitch. I hate that everyday I see disappointment on my families face when I am not myself, when I am in pain and exhausted and short-tempered even when trying to stay upbeat. I feel that I keep dropping the ball.
I read other blogs of other people with RA or other chronic illnesses and am impressed at how together they seem. At how none of them let this miserable disease interfere with their life. I have seen kids with JRA doing great. It is great to see them play and dance. I am not sure how they do it. I try to stay positive but after 365 days of pure exhaustion and pain it is difficult. I read their articles and think, Yes I can do this. Things will get better. I am still waiting.
I cannot juggle. I forget things all the time now. My life has changed. It has changed. I can no longer fight it. I am tired of pretending I can. I used to be a social girl. I loved to hang out with friends, and family. Now, I shy away from it. I know that after an hour I will feel like crap. I know that my body needs the rest in any free time I can get. I miss my friends. I miss my family. I hate that I am letting it control me.
I now know that currently I am letting it win, and I do not want to. I need to figure out how to gain control. How to feel like my old self, how to juggle it all better. I need to feel the sunshine again.
I hate that I am writing this down but I needed put it somewhere other than my little locked up box. Whiny blogs are not what I had planned for this and it seems like I keep doing it. I hate being weak.
Please have a talk with your rhuematologist as they are NOT doing their job. What you are experiencing is real and actually a natural part of being newly diagnosed with ra. Could be that the blogs you are reading are being written by people who have had their autoimmune disease for awhile and have had the time to get a grip and learn to cope with it. Could also be that their particular medication combo is working for them. Just know that what you feel (both in the impact of ra, the pain, and the emotional toll) is real and natural for this disease. OK, I know, you probably didn't want to hear that but just know you are right in it all. It is your doctor that is not doing his/her job. I don't the particular med combo you are on but you need to have a serious sit down talk with this doc and that includes pain management. You ARE working both inside and outside the home and need better pain management to cope until the right med combo is discovered. And if you can afford it, please consider going to a therapist that specializes in chronic illnesses. You have carried alot on your shoulders (for years from what I am reading) and feeling guilty is natural but truly, not warranted. It has taken me 13 years to realize just one thing...I can't change other people (and that includes your doctor) but I can change how I react to them. Maybe it is time you lower the high standards you have set for yourself in your family. Can you maybe farm out some of this work: get a housekeeper, call in family and friends to maybe cook and freeze some meals for you guys for those extra bad days, etc. And can you please, please talk with your doc about pain management even if that includes narcotic pain meds to get you through so you can keep your job. And if this doc won't do it, find another ra doc that will. Just know that it is the meds and your doc that are failing you not yourself. (((HUGS))) If you need someone to talk to you can email me at abcsofra@aol.com
ReplyDeleteThanks For Your Advice! I will talk to rheum at next appointment about pain management. I have broached it before but nothing comes of it. He did give me some pain meds but they do not touch the pain and exhaustion! I am realizing I cannot do it all and now need to figure out how to get family to understand that I need help without feeling like a baby! Thanks Again for the reach out. It helps to know that others out there are around!!!
DeleteI second every word that ABCs wrote. I've had RA for 24 years, and during the first 10 I was in frequent, awful pain. If it hadn't been for narcotic painkillers and a cautious but empathetic and caring doctor, I don't know how I'd have gotten through it. The thing to remember is that this disease is changeable. Sometimes it gets better by itself for a time. And more often the drugs available now can make a huge difference. Pain is exhausting, physically and mentally. Please give yourself a break. You're living with a serious, debilitating, terribly painful disease. You just can't do everything anymore. Talk to your family about it. Talk to your doctor. Perhaps he or she can also talk to your husband so that he will better understand what's going on with you. You're not weak. You're not whiny. You have rheumatoid autoimmune disease--and the fact that you're still managing to work 40 and more hours per week outside the home along with handle most everything that needs to be done at home, too, means that you're tougher and more courageous than you realize.
ReplyDeleteYou can email me, too, if you want. I'm at bluewren56@gmail.com. I worked full time and had a family while coping with RA, just like you... and like ABCs, I care.
Thanks Wren! I need to work on changing the path! I have not quite figured out how to reach out to my loved ones on how I feel as I do not want to make them feel sad, or mad, or frustrated. I will speak with my rheum in 2 weeks and hopefully be able to get some pain relief! Thanks for the kind words and support!
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