Hello Everyone.....Like someone above mentioned, I'm a long-term sufferer of ME, over 35 yrs. to be exact. It was my third diagnosis after two neurological problems, both causing serious damage at the time. But ME became the one that has given me the most trouble. And yes, of course, our lives are forever changed.
In my case, I was used to difficult situations from childhood. The harder things were, the tougher I wanted to become...and did. Fortunately it transferred with this illness. I told no one in my biological family, whether that was a mistake or not I'm still trying to figure out. Let's just say that I wouldn't recommend it.
Again, I've been fortunate in having an understanding husband and daughters who became teens (not so very understanding) and then came back as mature adults dealing with a major problem. I count on all 3 of them today. I understand what you're saying about friends, so many of ours moved at that time, retired, became ill themselves or died...that continues to this day. But the few friends we have are true blue, have educated themselves about all my illnesses and I have a list that is still being added to. No explanations needed.
How did I come out this darkness of despair? Well, I knew I couldn't dwell in "that place" forever...I didn't want to, and I owed it to my family. I became a volunteer for organizations that were just being formed to let people know about my primary illnesses. That took the next 25 yrs. of my life, was rewarding...and depressing. There was nothing, so a newsletter was started, basic info about the illness(es) was sent, we did everything by telephone b/c there was no computer and we soon became proficient in helping people with Workmen's Comp, Medicaid, Disability.
When computers became available we moved to them. Then things exploded, but basic info was still being given by phone. Soon I was inundated with calls from around the world and, sadly, we had nowhere to tell people to go. We did have names in the U.S., but that was it. I was receiving calls at all hours and it didn't matter too much b/c my husband was gone during the week, and I seldom had proper sleep b/c of damage to the sleep center of the brain. Still, in the end I did burn out. It was too much for any one person to cope with, and I was tired.
I had help along the way with many doctors, but especially my neurologist of many years. He was the first to identify an illness missed by the MRI radiologist, then the neurosurgeon identified the second and was certain that I had cancer. My neurologist kept telling me he had seen it many times before and it was never cancerous. Back then it took something like 3 mos. to find out that it was non-cancerous. Above and beyond that was the fact that I wasn't improving at all. The doctors who proved to be the most helpful had either volunteered in Third World Countries or came from them themselves. American doctors had never heard of the condition. In order to help myself, I forced my body out the door and walked about 2 mi/day, and then came home and collapsed on the bed. The very wrong thing to do. But I had been a walker and bike rider before this occurred, so thought it was the best way forward.
Wrong: As I later found out a new technique known as myofascial therapy was the way to go. I was fortunate to live near one of the few clinics doing it in our city. I recently went back to PT (myofascial) and found it to be even more gentle than years before. Meditation was one of the first things I learned, and then I had to deal with both of my daughters having problems. They were my first priority...let's just say that I was going and doing almost all day every day.
I'm not saying that I wouldn't have wanted my old life back during that period. It was just that there was no positive choice for that to happen, so I took the other fork in the road. For me, it was right. All these years later, I continue to deal with plenty of unknowns, lots of unknowns as a matter of fact, but others in my family are healthy and that's enough for me. Having said that, I realize that I was old enough to have married, enjoyed many types of work, had children and had a really great life going. Not one that was easy to give up, but that was taken out of my hands. My heart has a special place for those just starting out.
I developed anxiety and the first go-around I was able to get out of it myself. I followed a certain protocol, but then I developed shingles many years later and there was no way I was able to fight it off. It very quickly ramped up from anxiety to panic disorder in hrs. I also see a counselor as needed, and will continue to do so for the remainder of my life. I know my weak areas and am willing to take responsibility for them. That's the one thing I've always been: Miss Responsibility.
This year alone I've been hospitalized 9 times. I now find out that I have Autoimmune Encephalitis, a not very widely know illness, have serious seizures that can leave me unconscious for 2 days at a time (certainly not good for the brain), have heart disease even though my diet is considered perfect, and I wasn't heavy until I had to go on meds for the encephalitis and my heart. Well, heavier than I would like to be. I now have 5 stents in my heart and one implanted in my carotid artery just last week. I realize there will always be something and I pretend that I wear armor and the arrows just ping off me. It's not the fault of the doctors, my family or even me. It's the way of life for a lot of us. I don't make comparisons with others and I'm thankful for every little thing that drops in my lap.
I've come to realize that money is not where our self-esteem is, it's in what we do for our families, others and how much we can give to help different institutions. I came along at a time when there was no pain relief...and it was rather all-encompassing and quite an extraordinary situation. We finally had gabapentin, but the dosages were very high and affected me mentally...I couldnt' remember anything. But one day, about 3 mos. later I found myself bending over sorting my shoes. My pain had lowered incredibly. To this day I still have pain, but control it as best I can. I'll never be without it...
I can't tell you what will make the difference in your life, but these are the things that made the difference in mine. I had always done volunteer work, mainly with children, but this need was too great to pass up. I'm proud of it; and I'm glad i did it. I was alone a great deal of time, and couldn't expect my family to be my entertainment. My daughters were married and had families of their own, plus they worked, my husband was already on overload, so I had to it for myself...and, of course, that's the best reason for doing anything.
As far as seeing your friends, may I suggest something that I turned to about 2 yrs. ago? Lunches were too long and I couldn't sit for that length of time. I found that everyone loves a back porch (with mosquito screens) that we have. There are plenty of trees and a cross breeze that keeps it cool most of the day. We have flowers everywhere...and birds. So I invite people for lunch, have take-out, my husband brings it out, and we'll have a cup of tea and a small dessert. It's over and we've visited and had a very nice time. I've also done the same just for coffee or tea in the a.m. Afternoon are generally out as I'm too tired by then. My husband also enjoys visiting with them, and they like him, especially when he answers financial questions. So, I'm saying that you don't even have to prepare a meal. Order it, pay for it and have your friend pick it up on the way over. Take turns.
My husband makes delicious coffee even though we're tea drinkers ourselves. A last minute call is always welcome by most friends and some even come in their robes or whatever they happen to be wearing. So invite people, make the time specific and if you can't make coffee, ask them to pick it up and pay them for it.
Tell them you feel best when they don't feel burdened to bring you something, that you want to see them and hear about their families. And that brings me to another point....listen to talk about their families. Yes, it's sad to hear about marriages and births, but do you know what's far sadder? That is not knowing anything about these things. Not asking to see pictures of the wedding or the baby. Get to know the wife, husband or baby...they could be the family you may/may not have on your own. Tell them to bring the baby along & have a few toys or coloring books and stickers handy, along with a popsicle or ice cream in the freezer. Really, we all desire love and acceptance. I wish you both. Yours Lenora.
