Fatigue
So I am free from the disease of MDS, realivity certain I will not face Leukemia, bone marrow has grafted in well and I am thankfully alive. I am very thankful for the team of Doctors who worked miracles to keep me alive and the comforting , supportive treatment they continue to give me. I am , however, left with dealing with the effects of Chronic Graft vs. Host Disease.This is where my body fights the new bone marrow as an invader so I must continually take a immune supprescent making me suseptable to every germ, virus and infection possible some of which can be life threatening. Thie rears its painful head almost every day in one form or another. It could be inability to eat and digest food, or painful swelling of my joints, maybe a painful itchy rash that breaks out on my head, in my mouth or on my legs.Maybe is's a cold I cant shake for months, or a simple condition experienced by infants called Thrush which almost killed me. It could be any number of things I will not mention here because of the gross out factor. Still, I am alive right, living and breathing , spending time with my loved ones and enjoying life. Well sorta, kinda not so much. You see after 5 years of this constant attack of my body, fatigue has overwhelemed me. Each and every day I must muster the strength to deal with whatever presents its self that day. Either I have to push through the pain, or wisely submit that the best I will do today is getting out bed and onto the couch with a steady diet of pain meds. The energy expended to keep going is enormous and I have no reserves left. This generally results in exhaustion, failed plans, inability to move forward into recovery and healing and utimatly depression, bad , dark, deep emitionally charged depression. That alone saps so much energy that by the time the physical and mental charges have gone off I am nothing but a bundle of raw nerves and broken sprit. Yes, I do have my good days that are mostly pain free with good mobility and a healthy appitite and when I get these I take full advantage of them. I so much enjoy these times because it continues to give me hope that things will continue to get better but I do pay a price of 3-4 days of recovering.. Unfortunatly there are not enough of these days to cement these feelings so most of the time I am scared, apprehensive, and much less of the person I thought I was.
Recent studies show that the effects of fatigue in cronically ill patients is the most dibilating effect they face. Many people simply give up the will to continue living because the life they currently have is not so muh living as it is simply surviving. Mental fatigue sends many people into such a depressive sprial that even there families are borken by the results. I fight this so hard as family is everything to me, without them I will tell you right now, I would NOT be here. A recent book I read " If you have to wear an ugly dress learn to accessorize" by Linda McNamara and Karen Kemper has been both an inspiration and valadation for me. It talkes about overcoming those overwhelming feelings like loss, fear, powerlessness and anger. It gives wonderful advice of navagating the healthcare system, how to field those well intentioned but hurtful, uneducated remarks, and finally how to know when to ask for help and when to guard your independance.
This last section it what I currently struggle with. When you are diagnosed with a life threatening disease you have to give up everything you thought to be important and just focus on yourself and your body. You have to give up control to someone else, in my case my wife, who becomes your caregiver. You have to trust others to make decisions for you, take care of things you normally would like, home , bills, childcare etc. You must resign yourself to nothing more then you and your body. That in itself is difficult to give up that kind of control to another and for me strikes of selfhishness. On the recovery side however there comes a time when you have to begin to take back control and fight for independance once again. This is rediculously difficult for all the above mentioned problems. While I work hard to come to this point, I am no where near that state of independance I enjoyed for most of my life and I have serious concerns that I will ever get there again. Hard? YES, extremly hard to accept that fact, hard to watch you wife having to do things she never signed up for . Knowing that you must rely on someone else to make decisions for you, or to help you physically move. Not being able to contribute to the household or even contribute to society is devistating for me. This list is long and while things are mostly trivial inconviences, the mulitiude that they attack you will simply beat you down to a quivering mass of blubbering protoplasm.
I am not who I used to be and will never be that person ever again. Learning just who I am right now is just as difficult. It is such a lonly feeling as well for most people have no idea how much of a struggle you actually go through with comments like " Well you don't look sick to me" or " Wow I would love a few days on the couch, your lucky" . You have to be able to move forward even if it is only 1/4 of a step. While it has been proven that you can teach an old dog new tricks, it takes 10X longer for the dog to learn. I am an old dog.