Having a chronic illness is a battle that I have to fight every single day. Having three chronic illnesses is like drowning. I can’t ever seem to get my head above water. Just when I think I’m on the edge of some sort of recovery – BAM! Something else goes wrong and one of the three illnesses betrays me.
I have lived my life believing that if I do everything right, if I follow the rules, if I work hard and if I have faith that everything will work out, it will and I will be successful and healthy and that somehow, someway, I will beat whatever odds have been bestowed upon me and somehow I will win this fight against chronic illness.
I have been preaching acceptance and grieving for years and I realize that I myself have not been accepting my own limitations and that I will never be what I want to be – what I dreamed to be. I need to quit playing games with my mind and come to grips that I am who I am. I will never be able to do all of the things I was once able to do and that those days are never coming back again. I’m not giving up. I’m just tired of fighting. I’m tired of trying to be something I’m not. I’m tired of trying to be strong and brave all of the time when I don’t feel that way.
By denying who I really am and what I am truly capable of doing, I am further causing damage to not only my physical self but also mentally. I have been struggling extremely hard the past two weeks and have had several breakdowns, which are very unlike me. I am not someone who is normally an emotional person but yet I find myself in a constant state of anxiety and I am having trouble just getting through the day trying to deal with the normal tasks of life.
I am starting to find that at work I am struggling more and more just trying to get through my shifts and I worked the past three days and had to hold back tears all three days because I was in so much misery. I’ve got to stop trying to feel like I have to prove myself to others – I don’t know what that is all about but I think that if I can prove my worth to others, I feel like I am truly worthy myself.
Look – I am not a sad, sappy, depressed, morbid person and I know my posts lately have sort of went in that route lately and I apologize. I have just been going through a lot, a transition of sorts, and I’m trying to sort through all of these feelings and thoughts the best way that I know how and this is how I do it.
I think I get to a point where I find a happy balance and then something else sets my health issues off and everything goes haywire and I can’t get my body back on track regardless of what I do. I can’t sleep, I follow a diet that is supposed to be nutritionally healthy for me, but I’m not well.
I feel completely lost so much of the time because I have no one to go to who understands what I’m going through except for my fellow online friends. I have no one to really talk to about any of this because to everyone else, meaning the “normals” (healthy people), this stuff is nothing. Their solution is to “just get over it” or to “just do it”.
I’m dealing with real issues that are life altering. I can’t get through a normal day without feeling like my insides are going to explode because I don’t know how I am going to get through it. If it weren’t for my Prozac, things would probably be a lot worse.
That is not a normal way to be, that is not a normal way to live. I feel that way because I physically don’t have enough energy to accomplish the things that need to be done. The problem is, our life is pretty simple, there isn’t a lot of stuff going on and I still can’t function with it. That is a problem. That is chronic illness. That is what is does to our bodies.
When you have a chronic illness, your body is already to the point where it is depleted of so much that just brushing your teeth, taking a shower, or sending an email seems like climbing Mount Everest. As with the Spoon Theory, there just aren’t any spoons left.
I try to be a good mom and I try to be a good wife but my illnesses always get in the way. They always seem to come first before anything and that is not what I want. But they hold me hostage. I will try to fake feeling well and I will push myself to do things with my family sometimes because I know that this all is affecting them, but it just further sets my health back by doing so because my body is just not capable of it.
These illnesses are not going to go away – that is why they are called CHRONIC. Chronic means FOREVER. This is a lifetime deal I am signed up for. I look at my son and I look at my husband and I feel sorry for them. They don’t deserve this – they are vibrant, exciting people. I just bring them down even though I try to be upbeat and positive.
But when your body is throbbing in constant pain and the exhaustion is never ending, it’s hard to feel that way all of the time. It takes energy that I don’t have to try and pretend to be like that.
People are always telling me how happy, upbeat, and friendly I am. This is my normal disposition and how I really am. When the sickness sets in and the flares have been ongoing, my whole demeanor changes and it’s like I’m a completely different person. I don’t even know myself. Chronic illness is a leach – it sucks every bit of your soul and life and leaves a small piece of what we once were. Everyday over the past 20-plus years I have lost more and more of myself from all of this.
I have fought so hard, and continue to fight so hard, for my life and it has gotten to where I have no emotional or physical reserve left. I feel like my husband doesn’t fully accept that these illnesses are not going to go away and he will say things at times to where I feel like he is blaming me for being sick. He will tell me, “You need to get yourself better now! We have this coming up or we have that coming up.” and that just adds extra pressure on me to get well.
I can’t force the flares away. If I could, I would never have one again. If I could talk my body out of them, I would have done that 20 years ago.
Thanks for listening.
You know, I almost never leave comments on blogs I visit, but your post just was so “right where I am” today that I had to tell you I know how you feel and I feel for you! I have fibromyalgia, degenerative disc disease and possible early lupus (blood work keeps going back and forth so who knows, no one will commit… I personally think I have chronic fatigue syndrome but that has yet to be tested ). Anyway, all that is to say I understand exactly what you mean. I wish I had some words of wisdom for you but even if I did I don’t write well enough to get my point across 🙂 I just wanted you to know that someone cares and I have prayed for you just now.
Sandy, I think all of us on this site understand how you feel and what you’ve been going through. It’s our own story as well. We might all have different issues at home or work, but the basic suffering is the same. There will always be those who will never understand the definition of “chronic illness” and somehow we will get blamed for our own pain and misery.
This past year I started to understand that I cannot do everything and regardless of whether anyone else understands that or not, there will be things I have to say “NO” to and places I will not be able to go. I know the consequences of crowding too much into one day, weekend or even week. It will set me back and I will suffer for it. Like everyone who deals with a chronic illness, I have to pick and choose what I will do and what I cannot. Some people will get angry and some may never invite me to any events after a few times of turning them down, but that’s the chance I have to take for my own health.
I, too, have a husband who does not understand how to deal with a spouse with chronic illness. Men tend to be “fixers” and when they cannot “fix” what is wrong with you, they get frustrated. It then becomes OUR fault that we are sick. They and others don’t understand that although we may LOOK ok, we go through life like someone struggling in quicksand.
I’m always trying something new that someone says is the wonder cure and in the process spending more money than I have. Some things have helped, some have not. I stick with what works best for me and although it isn’t a cure, it can cut down on the extreme pain, fatigue, sleepless nights, digestive upsets, etc. Like Sandy, I think I am getting better at times and all of a sudden another set of new symptoms will crop up that sets me back. It’s part of the game we play over and over.
We must have hope that one day we will find a wonder cure that will make our chronic illness a thing of the past and restore our vitality again. In the meantime, our only recourse is to live within our limitations and let the chips fall where they may.
Wow! I can definitely relate to your post. I think you are onto something. It took me a long time to understand what I do is not who I am. I still have days where I struggle with it but I think I am making progress. I even wrote a post tonight about what I need fromt those who don’t have this illness.
I’m really proud of you. It takes a lot of courage and self-understanding to get to where you are. 🙂
Hi, I came across this site accidentally while on Facebook this morning.
I just want to send a message of understanding to Sandy and any others who are in our same kind of position, to whatever degree of severity or unpredicability.
It is tough to feel life is not how it was once or how we’d like it to be. It is tough to have times of hope and then “crash” again. It is just tough for me to remember when I was able to control my ME/CFS enough to work and travel and act on stage and do social things , and the price I paid was some pain and sickness and more than average rest. I long for that time now a new and more severe phase has hit. I lng to be “tired” as in tired after a day of activity,; able to go to bed and wakje knowing the day ahead will not be spent in bed in the hope that even more rest will “fix’ me.
We understand each other, those of us who have these “intruders” in our lives.
Sometimes knowing our experiences ar shared by others is a comnfort. Other times it is an additional frustration that so many peiople seem to be going through this type of illness with so little help or even recognition.
i have no solution…won’t even tell you to “Take care” or “rest and think positively”. Sometimes those things annoy me. BUT however you’re feeling, I hope there will be something or someone for you everyday that makes a difference, even if it is only a xcomparaively small one.
Lots of understanding thoughts to you, Sandy, and the others who feel like this too. Marg from South Australia
I am so right there with you. I want so much to be able to give more of myself, but it feels like I’m a computer and the fibro is a virus that’s taking all of my resources. We do the best we can. Yes, we do.
*hugs* Thank you so much for sharing. So much.
Over the years I have written about 90 blogs and I want to write another post. I work hard on researching my topics and am looking for suggestions for topics I have not yet covered (are there still some topics I have left uncovered?gasp!). Some days when the fibro is so bad I can hardly bring myself to the computer. But, getting the word out is so important. Regards to you all from me in Canada!