Posted in Chronic illnesses

A chronically ill person with a healthy mind and a whole lot of frustration

Chronic illness can put a person in a deep and dark place if we let it.  Sometimes, it forces us to want to give up and perhaps not give a crap about anything or anyone around us. Living in my body feels like I have lost something near and dear to my heart.  I know who I am and who I want to be but my body dictates all these factors. I often say that attitude and response have more to do with a person than the disease but when you find yourself exhausted and ready to hit a brick wall, you have to stop and sometimes, when you stop, you don’t always know what the next step is or what you are capable of and it’s not you talking, it is the disease.

There are many times, I find myself unsure.  It is like I am staring at a brick wall and I don’t know that I should turn around or make a left or a right.  I love that God gave me wonderful children, a great mind, and this amazing ability to be strong when it feels like strength is the last thing I have but sometimes, I am not happy with life.  I want more for myself and there was a time I expected more from myself.

I am a type A person, a go getter and a fighter but when the brain fog kicks in, I am lucky I can drive my car.  Lately, it seems like the brain fog wants to dominate my life and when that happens, I turn into an emotional wreck.  Either I am sad, crying or numb and I want to smile, be happy, and I want to be me but gosh darn it- my brain – my healthy mind – is acting the same way my body does daily.  I want to control something and lately even the one thing, I thought I could control is getting the better of me.  It is frustrating and as determined as I am, the brain fog, the fatigue, and the pain slows me down.  I can handle one symptom at a time but I cannot handle all three at once.

I am still content with my life but the happiest time in my life was when I knew what I was capable of achieving and when I could work towards promotions and being the best at what I did.  There are the things I long for but chronic illness has proved it can stop me dead in my tracks and send me straight into that brick wall.  While I am content with everything that I do and have, a part of me wants more and life without RA and Fibromyalgia would be nice.  I am unhappy because I am not striving upwards and I don’t not how I can change that.  My sister tells me to change my thinking and that what I am doing now is just as important as going upward, but I like being better and the best at what I do and RA and FMS don’t allow me to get my adrenal pumping.  The only thing they allow me to do is get exhausted after going up two flights of stairs.

The person that I am is an overachiever and for some reason, my body is stopping me from being that overachiever and it is frustrating.   For some women, being wives and mothers is their achievement and while I do like being both of these things, I like having a life outside my home where there are ladders climb.  I can’t be more when I fall asleep if I sit down or when I am tired no matter how much sleep I get. I am trying everyday to find myself, to accomplish goals and be successful, and I can’t because the pain, the fatigue and the brain fog dominate my life.

I am tired of being sick.  I am tired of waiting for results.  I am tired of being tired.  While I know that I am not the only one who deals with these issues, and I know there are days where I can overcome these feelings, I hate that chronic illness makes me weak.

Two years ago I was diagnosed and in the process of getting sick, being in pain all the time, and finding treatment options, I gained sixty pounds and the only good news came when I stepped on the scale this morning and found that I had lost six pounds.   I couldn’t believe it so I moved the scale to the other side of the bathroom to make I wasn’t hallucinating.  These little victories are the ones that keep me moving and being hopeful but I am not immune from the frustrations and complexities that these conditions to bring to our lives.


11 thoughts on “A chronically ill person with a healthy mind and a whole lot of frustration

  1. Pessimistic vs. optimistic. You know what? We’re sick. We have a horrible, butt kicking disease that there is no cure for. Guess what? We could be dying of cancer. Remember that. Works for me. 😉

    1. Whine and groan – I do see what you are saying. Unfortunately, because of this Type A attitude – That way of thinking doesn’t work for me because I hate that some force is stopping me but I do get your point. I am generally optimistic but the days where this damn disease looks like it is so close to the finish line and I am so far behind that I can’t even see it are frustrating. Here is to better days!

  2. Good post Lana. I sometimes feel like I don’t know myself anymore.

    The pain, stiffness and swelling are all equally bad, but the brain fog and fatigue are the worst for me. This is where a healthy person would pipe up and say, “well … at least you don’t have XXXX*.” (* insert assorted disease here)

    Chronic illness makes us feel weak. The truth is that we are far from weak, we are just measuring ourselves against a healthy persons yardstick.

    1. Measuring ourselves against a healthy person’s yardstick? I suppose even so we still measure much higher when it comes to how hard we have to work.

  3. I am open about my feelings and I am real so I am sure that is why a lot of people read my blog. A lot of people who struggle with the anxieties and the pain of chronic illness don’t know how to express these feelings but I do and I am glad that it helps them. It also helps me to vent as well because expressing feelings is better than keeping them bottled inside.

  4. Not so much that we measure ourselves against healthy people, but out employers, co-workers, friends and family all do. Most of them don’t understand RA, I think most of them view it as an inconvenience, rather than a chronic illness. I have gained fifty pounds since being diagnosed, to most people I have just let myself go. They don’t understand how bad we hurt everyday, that to just making it through a day at work, no matter how bad you hurt, is an accomplishment. I have people ask me to go do stuff after work, but most always politely turn them down. A couple of weeks ago a co-worker asked me, “why don’t you ever want to go out with us”? I want to, I just hurt too bad after 12 hours of work. No matter how much you try to explain to them, most will never understand us.

    1. You are absolutely right about the lack of understanding. These are the people that we interact with daily and how they view us affects our self-esteem. It is frustrating that we don’t feel normal but it is even more frustrating that we are not understood to be normal by onlookers. I hate that I have changed. I hate that I am not happy as I used to be but it is hard to be happy when the pain and being sick dominates your life. I just needed to say what everyone feels like. I just happen to be fortunate enough to be able to express it in writing.

  5. I personally cant stand where a family member or someone in your daily life says exactly that “at least you dont have ……………..” Because even though I know this is kind of negative, sometimes when I am having a hard time I wish for a more “final” diagnosis because at least I would know that something else is going to happen, not this same thing day after excruiciating day stuff. Most of the time I dont feel that way but every once and a while, it gets the best of me and from what I have heard others feel that way too, so at least we are not alone.

    I also agree that some women are fine with being housewives and moms and thats the extent for them but once the kids grow up or are in school, it boggles my mind how women who CAN work(healthy women) can/will still choose to sit home instead of enrich their lives with something meaningful. I WISH I had that opportunity, I didnt even get to finish college and can barely keep up with my kids because of my pain,etc…. I just wish I had the option at least to be able to go back to work when my kids are older or enrich my life instead of slowly losing who I used to be.

    Sorry, a bit of a babble but I think you will get it Lana.

    1. As frustrating as it gets, you can control your feelings rather than what happens. Hopefully, when you finally get your diagnosis and you find a treatment plan that works, you will be able to do all the things you dream about doing. But I understand everything you are saying. I love that God made me smart and strong but he also made me weak when it came to not having the power to do everything that I know I could be capable of us if not for chronic illness and pain.

      1. I have my diagnosis, I think I mis-spoke(typed)…. I have a diagnosis of fibro and other chronic pain conditions that Ive had for much longer. I meant sometimes even though its the negativity getting to me I in the past had hoped for a terminal diagnosis so I would know there would be an end. Ya know? But at the same time you try to avoid thinking that way.

        Hope thats not too terribly dark for you but like I said I have heard others with Chronic pain say the same thing. Because at least it would make sense to others and ourselves when we couldnt do things, “We would think its ok because I have cancer.” But considering thats not the case if we say that about our chronic pain and how we shouldnt/couldnt do something we feel guilty and let others make us feel guilty. Its a very odd line.

      2. No I completely understand. I am not sure if I am lucky (knock on wood) or maybe that my life never stopped being busy but I know that is so bad for some people that they cannot work or really enjoy their lives. And I worry that if it gets worse, I won’t have a career and that is what I strive for and its what keeps me going. I don’t know who I can be without my career. Chronic pain is difficult thing – it makes us angry, frustrated, etc.-there is no question. None of us should feel guilty just because we have chronic pain rather than cancer. There is a cure and hope for cancer but there is no real cure or sometimes NO hope for chronic pain conditions. Don’t feel guilty because you are sick – simple as that but don’t let it stop you from being happy either. I am not happy everyday and I don’t think I am happy 50% of the time. I want to be but chornic pain makes it soooo hard.

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