[“Elaine” battles fibromyalgia, ME/CFS, and most recently major depressive disorder. This is an excerpt from her helpful posts on the ME/CFS & FM Message Board.]
To anyone curious about how I can fall apart and then pull myself back up and battle what or who I need to – most recently Major Depressive Disorder and PTSD. This is how…
This is my real life story about my Father who was my teacher, and I became his student. He never told me at the time he “enrolled me in a course” and it was to teach me how to live with my medical conditions and to develop coping skills. I will always be grateful to him for the information he so generously shared with me.
I got my strength (mentally and physically) from my Father. He had Parkinson’s for 19 years & RA for 29 years. Strange thing is when I got really sick – was severely depressed and 100% bedridden – my Dad was the only person I responded to. (I stopped talking, stopped caring and gave up.)
I felt “useless”, “worthless” and like an “extreme burden” upon anybody who had to take care of me. I could not even feed myself because lifting up my arms was not something I could do. I had to be fed the way you would a child. I had to be carried to the bathroom and I had to be given my medication. None of this was anything I could do on my own & I believe this greatly contributed to my severe depression at the time.
My Father was persistent and was not about to let me continue like that. He would get in his wheelchair every day and come into my bedroom to talk to me. I did not answer him for weeks. I had nothing to say to anybody and I just wanted to be left alone. Again, my Dad refused to give up on me. I finally responded to him when he said, “We walk in similar shoes, so I understand how you feel.” (He meant we both have illnesses. They have different names, but they affect us in similar ways.)
That caught my attention, and I finally spoke to him. He phrased things for me in a way that made me think.
• Do you want to spend the rest of your life being miserable … OR do you want to learn how to accept it and deal with it? You can move forward and create a happy life for yourself.
• The word “disabled” does NOT mean you can no longer do things. It just means you have to learn how to do things differently.
• You can be as mad as you want for as long as you want. It’s up to you, but that attitude will get you nowhere.
• Are you planning on never even trying to walk again?
• Be proud of who you are. Don’t feel sorry for yourself. Hold your head up high.
• Allow yourself to grieve periodically. It’s natural and you will need to. The rule is to not let those negative feelings linger more than 1 day. When you go to bed…hope that tomorrow will be a better day.
• Stop praying to God that you won’t wake up the next day. God will NOT answer that prayer for you. Try to ask him for other things & remember to be reasonable.
• Do not let this illness become your whole entire life. Learn how to incorporate it INTO your life. You can have a life outside of this illness.
I’ll never forget the day he convinced me I could get out of bed. He told me to be very careful, sit on the side of the bed, and slowly lower myself to the floor. I did then I looked at him and said, “Now what?”
He said, “See if you can crawl to the doorway.” I did and when I got there I smiled. My Dad then said, “The bathroom is on your right and if you go down the hallway, you will get to the kitchen.”
He was so nonchalant about it, making it sound like it was so easy to do. It gave me hope just to know, I could get out of bed and crawl to another room all by myself!
I crawled until my legs got strong enough to use a walker. With my walker, my Dad and I used to race in the back yard. He had to put his electric wheelchair on “slow” to make our races fair. Eventually, I no longer needed the walker.
My inspiration is my Father. That’s part of my background story.
Part 2… Regarding How to Live with Medical Conditions…and to come out in the end on top and happy!
This is more of what my Father taught me. As I posted before, this advice and guidance my Father gave me helped in changing my life, my perspective & outlook. I put his words in quotes, because these are HIS words, not mine. I’m just passing them along hoping they may help others.
More of what he told me:
• “On the days when you are in pain, acknowledge it is going to be a tough day & take it easy. Still get some things done. Small things and rest in between. This will give you a sense of accomplishment that you can still be productive even on the days when you are not feeling well.”
• “Do not be angry because you have to use a walker at such a young age. Look at it as a means of transportation. The walker will help you get to where you need to go whenever you want. And maybe some day you will no longer need the walker. I did not care so much for my own wheel chair at first. When I realized where it could take me, then I liked it.”
• “You have tried to take your life 2 times, and you managed to survive. Do you now realize it is not your time to go yet? You have a future ahead of you and most importantly, you have a life to live. Please do not forget about that.”
• “Always remember where you once were, so you can be proud of where you are now. Never forget about the bad condition you were in before. That will always help remind you of how hard you worked.”
• “Do not be ashamed of your illness. In what others see as our greatest weaknesses, God perceives as our greatest strengths. We are still useful. We can still do things and contribute. Perhaps we might have to learn how to contribute in a different way though.”
• “When a doctor tells you that you can no longer do things, take what they say into serious consideration. Test yourself to see if the doctor is right or wrong. Make sure you are very careful when you do this. Sometimes the doctors will be right & sometimes they might be wrong. Remember your doctors were wrong about you never walking again, because look at you now.”
• “Try not to get overly frustrated if you are unable to do something on a particular day. Just because you are not able to do it today, does not mean that you will not be able to do it tomorrow, or the next day. Eventually, you will be able to do it.”
• “I am teaching you about all of these tools that you will need to use for the rest of your life. That is what happens when you have a medical condition.”
• “Look at these tools as GIFTS. They were given to me, and now I am giving them to you. When you learn how to successfully use them and no longer need them, give them away to others. Keeping them and not sharing would be selfish. Some people may want them, and some may not. Always be respectful of their decision.”
My father was my teacher. He took it upon himself to personally show me that with an illness you can still have a happy, full, and rewarding life. He was a very happy man, and he had Parkinson’s with Rheumatoid Arthritis. (Believe it or not, he considered himself a lucky person!) That always amazed me!
My hope is that others can possibly benefit in some way from these words.
Wishing all of you the very best. Take care,