Confused Loved Ones?
For those who have loved ones with Fibromyalgia who are confused about the disease and don’t know what to do, this is for you.
Hi, my name is Deb Lundquist and I am somewhat of an authority on this disease as I have had it for 18+ years now. In my previous life, I was a researcher as was my husband. Together we have researched this disease, well I call it a disease, ad nauseam. I have written several articles about it and since it has been my husband and my roommate for all these many years, we feel we know it quite well.
My husband has created some unique ways of dealing with it and even had to reteach me how to dress in the beginning because I could not use my right arm. He had to teach me how to pull up my pants with one hand. How to zip a zipper with one hand. How to button blouses with my left hand.
At that time, I had Reflex Sympathetic Dystrophy (RSD), the worst pain known to man, on top of the Fibromyalgia and so I didn’t feel the Fibromyalgia, but I had it. Some of the medications the I took for the RSD were the same for the Fibromyalgia so at least it was being treated, but it was making the RSD worse than it should have been. Many of the symptoms are the same. All of the symptoms are just as confusing.
My husband’s suggestion, his only suggestion to you is this, LISTEN, LISTEN, LISTEN to everything. Listen to everything they say because only they know how they feel. ‘I know some of the things they say sound outlandish, like the bugs crawling on them, but when I saw the bumps on her arm and her trying to brush them off and she told me what she was doing, I believed her. She is overly honest.’ LISTEN! ‘Listen to everything they don’t say. They don’t tell you everything because they don’t think you will believe them. She started scratching everywhere, from her head to her feet and everywhere in between. I looked at her scalp and it was raw.’ LISTEN! ‘Listen when they sleep or rather don’t sleep well and her arms would fly up in the air and stay there and I would gently put them down and up they would go again. Then one night, she completely threw herself off the bed and hurt herself. She had developed REM sleep disorder. Thank God, she had sleep apnea or she would have broken her nose. Instead, she only broke her nose piece in two. She said in her sleep as she laid on the floor ‘damn chicken’’ WATCH!
Yes, he got to the point where he had to help me talk. I would be talking and all of the sudden the word I wanted would completely slip away and I would look at him helplessly and he always knew what word I wanted. He watched me constantly. When I was talking to people, he was with me always. If he wasn’t there, our daughter was and she would support me that way. It is the brain fog.
When the doctor put my RSD to sleep for a while, we started dealing with the Fibromyalgia. We were still dealing with many of the same issues. I was still doing therapy and my right arm has never and will never be what it once was, I lost so much muscle. It has just wasted away, atrophy and dystrophy.
So, my husband has to do all the cooking. I can’t pick up a pan because it is too heavy, let alone stand the heat of the stove or the oven. Give me a hot plate and I will drop it every time. I try to help with laundry, but I can’t do much. A heavy load will not only get my back going, at one time I had 5 bulging discs, but my right arm will drop it. Folding laundry will cause pain in my right arm to increase to the point I have to stop. So, my husband said forget it because I would force it until I cried. I can’t clean the house because of my back. So, I felt useless. Completely a drag on my husband, completely guilty and constantly told him he would be better off if he just left me for someone that could do things with him. That is until he got mad at me! ‘Stop it! I love you and don’t want another woman! You are going to a psychologist again!’ And I did!
You see, that is what we need from you! Love! We need to know that even though we can’t do what we used to do, even though we can’t be the homemaker we used to be, you still love us and want to be with us.
We need you to make us make an effort to get out of bed and get dressed. We need you to help us take a shower because it is hard as hell for us to do it! It is absolutely exhausting and I used to need him in there to hold me up and then he bought a chair. He still had to give me the shower and then as I got stronger I could do most of it, but he still had to help me with my hair. Then I was worn out for the rest of the day, but it was a beginning. I had a purpose. He was helping me to have a purpose!
It wasn’t easy. He didn’t push hard, but he did gently push. See, the RSD had me bed bound. I was almost in an electric wheelchair when the Doctor put it to sleep. We were headed to Minnesota; the pain was unrelenting plus I had a complex chronic migraine and I could hardly move. I was so sick. We got half way to my brother’s, Madison, WI and we stopped for lunch. My husband tried to get me out of the car, but I couldn’t. My legs wouldn’t work. I started crying. I couldn’t stand. I sat on the floorboard of the car and cried. He told me to stop it, I was only going to make my migraine worse. He left for a minute and I don’t remember anything for the next 10 minutes I was just blinded by pain, but then after that I could stand as long as I had my cane and his arm. We went in and ate. After that, I got back into the car, laid back down and went back to sleep. When we got to my brother’s the migraine was gone! It was the night before my nephew’s wedding. We went to the rehearsal dinner. I couldn’t believe I could go.
The next morning, I hopped out of bed, yes, I said hopped and started moving around like the little energizer bunny. My husband looked at me funny and I said what? Then I said, ‘something is wrong, but I don’t have time to figure it out.’ I got ready to go to the wedding and went down stairs. Got my own breakfast, which I never did. My brother and sister-in-law looked at me funny. I said, ‘yes I know something is wrong. I don’t have time to figure out what it is, I’ll figure it out later.’ My brother said, ‘sit right here and I think you will figure it out right away.’ So, I sat. It hit me right between the eyes. No pain! I was in remission! I was as weak as a kitten but I had no pain! Every other symptom was gone! It might have been my nephew’s wedding, but I had been given the best present of my life. It lasted for 7 heavenly years.
During that time, I did therapy, a lot of therapy! My husband supported me every step of the way. That is what we need from you! We need your support! We need you to help us figure things out. Whether you are our partner, our parents, siblings, friends, whatever, we need you to help us to stay with us. We need your love and understanding. We need you to LISTEN and WATCH! We need you to catch us when we fall. We need you to tell us it is time to go to the psychologist before it is too late. We need you to tell us it will be okay when we are in a flare. We need you to go to the store at midnight if we need something without complaint because our pain is out of control or the itching is so bad. Most of all, we just need you whether or not you understand at first or believe at first in what is happening to our bodies, because believe it or not, we don’t either. We are confused, scared, and we need someone to hold onto and we want it to be you.
Written by Deb Lundquist
September 24, 2017