Blogging For Endo: The Mental Impact #myendomarch

Living with endometriosis takes a toll in more ways than one. The physical aspects not only affect your physical well being, but it takes a toll on your mental well being as well. I know that I apologize nearly everyday for being a poor wife. I get really depressed because my husband has to pick up so much of the slack. Now mind you, it is slack that he wouldn't have to pick up,if it weren't for me having endometriosis. I feel so guilty that I am so "lazy", though I know that laziness is not the issue. If I could get up and do the laundry, dishes, or vaccuum, I would do it in a heartbeat. Knowing the truth, or the reality, doesn't make it any easier to comprehend or cope with. 

I have been diagnosed with severe anxiety. I know that my endo has something to do with that diagnosis because when you live in such severe pain, it is hard to stay mentally stable. I worry about everything. It is hard to control random thoughts and cope with the consequences of those thoughts. It is extremely hard to make a plan, and stick to it, because every time you make a plan, endo has a different plan set for the day. 

The lack of sleep can also take a toll on your mental well being. I know that I have a really hard time going to sleep. If it isn't the pain keeping me up, it is the thoughts of all the things that I need to get accomplished. Without sleep, your body and mind can't reboot. It slows your thought processes and makes it hard to concentrate. I may not be able to keep my mind on one crochet project at a time, so I do several to keep myself from getting so frustrated. 

The feelings of guilt, loneliness, laziness, pain, and frustration at the situation, takes a toll on all of us. We all have those times that we feel alone and like we can't handle what is being fed to us. We all suffer times of weakness and mental breakdown. We have to remember that we are not alone, no matter how much we feel like we are. We are doing the best that we can, though we feel like we don't get much accomplished. We shouldn't feel guilty for having an illness that takes so much away from us, though I know that is easier said than done. We need to give ourselves a little bit of a break when we are frustrated. Living with endometriosis is not easy, fun, or even bearable most days. We are going to react to our situation and take it out on the people around us. As long as you can catch yourself when reacting to life and apologize for being a "witch", than the people that love you will understand. We all have moments of weakness and that is fine, because we fight like girls! The fight is an everyday battle and no onoe can battle everyday with out a slip or two. 

The mental toll that endometriosis can take on us and our families is almost as significant as the illness itself. We are all strong and we have each other to lean on. We CAN fight this and we WILL prevail one day. When you feel like falling apart, remember you are not alone. Remember that there is someone else out there that is going through the same thing you are and will understand. I remeber that the search for a cure is on going and that is what helps me on the days that I feel like endo is getting the best of me. We will get there one day. 

The #EndoMarch2014 will help us get there! Please remember to go to their website and help us spread awareness about endometriosis. www.millionwomenmarch2014.org 

             

Struggling but Fighting

Days seem to get longer and longer with each passing day. I notice that I am having a harder and harder time dealing with this illness. I have suffered for 20 years and each year it gets worse. If I really think about the progression of the illness, and the pain associated with it, I think I may just give up. The pain is so unbearable now, and next year at this time, I can't even comprehend how I would deal with it. 

I have been in some pretty bad pain for the last few days. I will be starting any day, and my uterus and ovaries are punishing me. My husband says I am stubborn and always try to do too much and end up paying for it later, so he came up with a solution. He went and picked up a slew of movies and sat down and watched them with me. He knew if he was up and doing stuff I would figure out a way to help, or do something else that needed to be done. I know it killed him to sit all day for the last 2 days, but he was content because he knew I wasn't over doing it. So let me actually get back to the point. The movies we rented were apparently scratched and we were missing big chunks of the movie. We only paid half price for the rentals so I told my husband, "I guess we only get to watch the half of the movie we paid for." Of course we both started laughing and I immediately started crying. Laughing hurt so bad that I couldn't hold back the tears. I felt so bad. My husband hates it when I cry because he feels helpless to do anything about it. I usually do everything in my power to be strong. I cry when he isn't there, but every now and then I can't help it. Today it made me so mad. We were having a good time and the pain had to remind me that I couldn't do that today. For just a split second the old me was there. I was light hearted and quick witted. It disappeared as quickly as it had appeared. 

I am struggling with the unknowns. I have been reading a lot of articles about Endo lately and it is a bit discouraging at times. The unknown is what is so scary for me. I had a surgery in April thinking that the outcome would be less pain. Needless to say that wasn't the outcome. My Endo was so much worse than the specialist had thought and therefore the outcome wasn't as predicted. I have severe endometriosis and adenomyosis so the next course of treatment is to have a hysterectomy. The fear I have is that I won't get enough relief from it. The majority of my pain is around my periods and so we think that taking my uterus will take care of the adenomyosis. Taking my ovaries will prevent the endometriomas from growing back on them, and therefore reducing my pain. What if it doesn't work? What am I going to do? I am scared that it is just going to exacerbate another complication from having endometriosis. I am scared that it won't take care of the amount of pain that I need it to. I know that it won't cure the Endo. I know what it won't do, but it is what I don't know that it will do that is scary. 

There are no guarantees when it comes to having surgery to treat this illness. I have an excellent specialist, but he doesn't seem to know much about how to treat the other organs that can be invaded by the endo. He knows how to excise it, but he doesn't do resectioning of the colon, nor does he know how to find it in the colon muscle. I talked to him about the issues that I was having with going to the bathroom and he told me that the only gastro doctor that he knew, in the area, that could identify it in the muscle of the colon, had passed away. He hasn't been able to find another doctor that could. So that essentially told me that if that was an issue, I would have to be able to travel to the CEC, or find another doctor that was closer. 

I am not able to work, other than selling my crochet items, and that doesn't earn us much money. My husband works hard in the oil field as a welder, but he doesn't make the kind of money he should. We aren't at poverty level, but we live paycheck to paycheck most of the time. We have paid off our house and our vehicle, but with medical bills, we can't afford to buy another vehicle. I hate being such a burden to my husband. We can't afford the travel to go to different doctors, or for the hotel stays. Heck, I owe over $100,000 in medical bills just for this year alone. That means that if we didn't pay for gas, groceries, electricity, water, or cell phones, we could pay off the debt over the next three years.

I broke down tonight and told my husband that I was scared. I have been trying to so hard not to burden him more than I already do. I just broke down tonight and couldn't keep it bottled up. I felt helpless and didn't know how to hold it all in. Why does the endo have to take away laughter from me? It seems that it just keeps taking more and more. I am losing pieces of me, bit by bit. There used to be a time where I would crack jokes constantly. I used to twist what people said and make it funny. I don't do that so much any more. I think you have to be happy in order to be funny, and I am just not that happy. My husband does everything in his power to make me smile and keep my spirits up, but sometimes it just isn't enough. I am fighting the depressive feelings that keep creeping in. The best way to fight them is with laughter, and I can't laugh. 

I know I am not alone and that I have plenty of support from my endosisters. I know that things will look better in the next week or so. Until that time comes, I have to fight to stay positive, strong, and light hearted. It is definitely a fight for me. I have been in pain almost all my life. I was physically abused by a step father, raped by a grandfather, and now have severe endo. I really need a break from the pain. I fought people growing up and now I have to fight my own body. I have survived so much brutality and I will survive this too. I have always fought like a girl and I won't give up now.