I had not been able to go and do like I have wanted to for a long time but back in Oct I decided that I wanted to try and go back to church as the past year doing so was just too much for my body to handle. I lasted doing that for about two months and then I had to start staying home on church days because I was feeling worse and worse from extending myself just one or two extra activities a weekend. The only other thing that I was doing was going to IV treatments and doctor appointments and an occasional drive to my parents to do laundry which also is overwhelming to me system not to mention the hour drive each way.
I hate this about my life! I am often so exhausted that I can't even concentrate to type out words without major major mistakes which then makes me mad because of the perfectionist part of me....lol.... I guess for sure one thing that I'm learning is that I have to let that part of me go if I want so peace with myself. I do have Dragon that I can use but again it takes energy to do that as well, not much, but it does take some. A great example of how much energy I don’t have, this has taken me about 30 minutes to type so far an I am really fast at typing but my thoughts and just don’t seem to connect to my fingers at the same time plus I have to stop and rest the muscles in my arms and hands because typing is painful most of the time.
I am really disappointed that I can’t live a normal life and that so much of life has changed for me and that I am terrified that it will never be the same for me again. I know that others who deal with the illness that I have, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Mast Cell Activation Disorder, Hydrocephalus, Lupus, Rheumatoid arthritis, Osteoarthritis, Fibro, and so many other things that you get when you have Ehlers Danlos Syndrome which is a collagen disorder which is what over 80% of your body is made of which is why you have so many things wrong with you inside and out from head to toe, understand what I am going through. I hear people all the time say they have a friend who has Lupus or Fibro, or one of the other things that I deal with and they are all sympathetic and sad for them and how hard their friends life is for and how they pray for their friend and go to their home and help them with things and so on, and I don’t mean to be insensitive or sound uncaring but I see friends post all the time about how their friend has cancer and how much they hate cancer and so on. People don’t understand that I know about cancer first hand from my family and I do IV treatments where lots and I mean lots of people come in for treatment who have cancer and rarely do I see hardly anyone who is sicker than I am in the long run. Yes, I understand that cancer can make you feel bad and that the treatments make you feel horrible for the time of the treatment and I also understand that there are times when the treatment causes you to feel bad for a long time. I also understand that most of the time when people get cancer it is really hard on them because they most likely have not lived a life of being sick and in pain like I have and others like me have since birth, so this new illness of cancer really can take a toll on someone's life. Cancer is bad and it kills a lot of people, but there is an end to cancer, either you know that treatment might help or might not or that you will die from it or you won’t, but at least there is treatment for the most part where for myself and others like me there is no treatment and it will never end until you die and the worst part of it all is that what I deal with isn’t really most likely going to kill me. Listening to people say things about the One illness (not speaking of cancer here) of their friends and how much they care for them is hard to take because I am there thinking, I have that plus a bunch of other things and no one is contacting me or supporting me and I wonder if anyone that knows I have all of these things is even concerned about me.
The other really hard thing about what I deal with and that others like me deal with is that saying anything like what I have just said above leaves others thinking that I am just complaining and I have even said it myself, mainly so people won’t think I am major downer, but people say to me all the time that things could always be worse. Well, I sure would hate to see what that life would be like. I am pretty sure that I would not allow myself to live through one whole day if things were worse like people tell me they could be. People with EDS are very strong people and others, when we want to talk about how hard life is for us, tend to try to convince us that we are weak because we are talking or in their words, complaining about it. I have lived in Nigeria, a 3rd world country and believe me, you haven’t seen hard times until you have lived in a 3rd world country. Hate to say it, but even those hard times I saw in Nigeria, those people going through them, were still able to do something to support themselves or take care of themselves, such and bathing and eating and cooking and so forth that people with just a ¼ of what most people like myself have a hard time doing.
One more aspect of dealing with this type of illnesses is the depression that goes with it. I am single without children and my parents are elderly and cannot come and help take care of me, even if I lived with them they would not be able to do very much for me because my mom is unable to take care of herself right now and my dad, who has had cancer and still deals with the effects of that because of his age, and he still works full time, has to take care of himself and my mom. My mom is recovering from Major back surgery. I cannot imagine what it must feel like to have to depend on a spouse or children to help me, I would feel like a huge burden to them, I know I do with my parents because they want to help me but they can’t and so they feel bad about that and I feel bad for them feeling bad because of me.
Depression is not only from feeling like a burden or realizing how much life is and will be changing because of the progressiveness of EDS, but the brain is affected and the nervous system is affected and there are things that you can’t control with your thoughts because those connections just don’t work the way they used to for many reasons and from many of the illnesses that are caused because of EDS.
The one thing that only two people in my life understand is that every time I talk to someone I am going to be happy and upbeat and say something to cause people to laugh because I just don’t want others to be sad in life. I came that way I guess and I am thankful that God created my spirit that way. I know what it is to be sad and I don’t desire anyone to have to be sad. Because I want others to be happy I am told by these two people that others often forget that I am sick because I sound happy in my voice. That is one more thing that I hope that people will one day understand about people with EDS is that just because your voice sounds better does not mean that your genetic disorder has by magic disappeared for the day.
Bottom line….. well, I don’t even know. There are many many days where I just don’t know and I do my best to occupy my mind so that I don’t think about all of the above all the time but it can never just be ignored. You can never forget that you have EDS and you can never pretend for very long that it is going to go away. People who don’t have EDS don’t understand that you feel every single day of your life like they feel on the worst day of them having the flu and you just want one person to know that or maybe not even understand that, but just to know that you are sick! What are you left with? You are left with prayer and what many times seems like begging God to either take you or change those around you to just even notice that you aren’t where you used to be in their lives, and for someone to just once say sorry this is happening to you and to please not let them compare their aches and pains and getting old feelings to what you are going through, and so far, neither one of those begging prays have worked. I do have a very very small handful of people, with only two in my life, meaning that they live close to me that have said sorry this is happening to you and that I know pray for me. Don’t get me wrong, I have people that I know that pray for me, and I believe in prayer in a major way and I am so thankful for those who do pray for me!!!! I just get to a point that on days like I feel today, so overwhelmed from exhaustion from trying to do one normal activity that it would be nice to know in a tangible way that I am being prayed for or that people are thinking about me. I know so many of those like me can relate and most likely have the same feelings. I am very much a people person and I don’t really appreciate being forced, because of my illness, to be stuck at home alone. About a year ago I started keeping track of how many phone calls I get that are not return calls to me from when I called others, and the number is lower than three a month. If you are not a person who has EDS and all of the illnesses that accompany it, just imagine being the sickest you have ever been in your life and you tell people that you are ill and NO ONE ever calls to see if you are even alive. If you know someone who had EDS or you are reading this to learn more about helping people, please try and remember this for those you know who deal with chronic illness, one moment out of your day could make the whole day and sometimes even the whole week soooo much better for someone. I have been told by my counselor that the reason I don’t get the help and support that is so much needed is because what I have is a rare illness and so people don’t know that it is as bad as it is so they just forget about you. How sad!