Monday, May 29, 2023

Life of Agony…

How ironic is it that one of my favorite bands is Life of Agony? Never in a million years would I think I would end up living a life of agony. I am not just speaking of the physical pain, but of the emotional pain that goes along with suffering from a chronic illness.

My days are so unpredictable it’s frustrating. One day I am fine, the next four days I can barely move. I have to decide if today is really a day worth taking a shower for because the pain of the water hitting my hypersensitive skin makes it an unbearable task that I now avoid.

I have bouts of guilt for being in pain and barely able to walk one day and then walking fine the next day. People think because I am young I am faking it. I wrestle with my mind because my mind tells me I should be hunched over, limping, using my cane, walker or wheelchair all the time. That I should not take advantage of my good days. Why? Because I crave consistency! For ONCE it would be nice to know what I will consistently be facing.

I look at people who are paralyzed and I know how much they must suffer and struggle being confined to a wheelchair but then my mind starts wandering and I am thinking “Man, at least they know what they are up against everyday. They wake up and they know that their legs will not work that today and every day they will be in a wheelchair, it’s the same thing every day.” Here I am waking up one day where I feel great and in 3 hours I have dislocated 2 joints and have swelling, pain, and aggravation because I can’t even make a plan for the day!

It’s such a roller coaster not knowing what each day, or even each hour will be like. It ruins plans, opportunities and it isolates you. I am confined to my house because I am afraid if I drive too far I will get stuck and not be able to get myself back. I hate being dependent on others for “companionship” but doing things on my own is no longer an option.

I don’t get to have a routine. I don’t get to wake up, hop in the shower, grab a coffee and head off to work. There are days I can’t get out of bed at all. Showers are not always an option, neither is a lot of clothes because of my skin hypersensitivity. I don’t get to have a job outside the home where I can meet with peers for conversation and a salary because lets face it; no respectable establishment wants a naked employee! Some days I wake up and I take a shower, get dressed and clean the house! I hate cleaning but I love when I can run a vacuum or scrub the sink because it’s a little piece of normalcy that I have for the moment!

I get frustrated at people who complain about doing housework, gardening chores etc because they don’t realize how much they’d miss the monotony of chores if the ability to do them was taken away. People think staying home and not working is the greatest thing and I am so lucky. ARE YOU KIDDING ME? I am losing brain cells by the day from boredom. I have no social interaction. I feel useless, unproductive and a burden to my Husband. My OCD and other weird quirky mind games get kicked into high gear because I am stressed out. It really is a miserable existence.
I try to focus on the positives; I have a loving Husband, Mom and dogs! I have great friends to communicate with via Facebook, Skype, Text and phone calls.

I do have good days and I look forward to them.

I am loved and I am blessed.

So my question to you dear fans, how do you feel about your life and the inconsistencies it is riddled with due to the unpredictability of your illnesses? How do you cope? What keeps you “sane”? Please share as your opinion is as important as mine!

I wish you good health!
Peace & Paw Prints!

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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  1. Nakki

    This post was almost as if it someone clicked on the “copy” and “paste” option right from my brain. I love the honesty of the post and the fact that you say it like it is. Not too many people are willing to do that, and instead pretend everything is sugar, spice and everything nice.

    Keep your chin up, and keep moving forward.

    From a fellow EDSer.

    • Dani

      Thanks Nakki! It’s the best compliment anyone can get when a reader feels like they are reading their own life story! Too bad its not roses and rainbows that you can relate to but instead it has to be aches and pains!
      As far as the honesty portion goes, my coping mechanism is to feel it, say it and let it go. I can’t dwell constantly on my “woe is me’s” because that would make the people around me miserable and I don’t want to be Betty Buzzkill. I try to stay positive, remind myself of all the blessings I have and move forward. I do find that acknowledging what REALLY sucks and not dwelling is super healthy for me. I don’t stuff it down, let it build up and become a raging self pitying monster. Instead I just say it and let it go because crying about it will not change anything! It works for me!!
      Thanks so much for taking the time to read and leave your comment!

  2. Ebony

    Well put, Dani!

    My only day of ‘adventure’ is Sunday to attend church and visit family (something I couldn’t do/didn’t feel like doing for about 5 months.)

    Thank God for Twitter, FB, Blackberry and TV or I’d be a looney tune!

    *soft hugs*

    • Dani

      Thanks Ebony! Glad you’re at least getting out on Sunday’s! I know as much as I hate to, don’t feel like I can or just physically can’t I do try to push myself to do it! Life would be so much more miserable without social networking for sure!!
      Thanks for taking the time to read and comment!
      I wish you good health!!

  3. Rene' Click

    Oh my I feel the same, it is like you took it straight from my life. Although the pains ans symptoms are different, I never know when they are going to come about between The Diabetes and the Cancer pills I dont know what is going to happen. I am pretty much stuck at home for financial an physical reasons I had to turn my car in due to being laid off my job. A lot of things we have had to give up so we can afford my meds and DR.s I to have a wonderful husband that has been so awesome through all of this, he is very reassuring. I still feel the same a burden and worthless sometimes I cant always clean and cook like I would like and the guilt is unbelieveable he works all day Mon thru Fri and I hate when he has to do things. It is hard and I completely understand your feelings I can have anything from severe stomach pains hot flashes to where I am soaking wet and pain throughout my body. Mood swings are the worst, I am constantly appoligizing to my husband the picture that you have up is sooooooo me somedays. Facebook and sites like these old friends and people that know what I am going through help me tremendously from day to day. I thank you for your post although it stinks to feel this way it is good knowing your not alone sad but true.

    • Dani

      Hey Rene’! I am glad to hear that you have a supportive husband and family. That really helps! Being sick takes a financial toll for sure! We are basically in disaster status financially. It’s horrible because it just adds more stress. It’s a vicious cycle for sure but I have to hold on to the thought that there is light at the end of the tunnel…let’s just hope its not an oncoming train! LOL!
      Thanks for reading and sharing! I hope things turn around for you soon!
      Good Luck and Good Health!

  4. Tracey

    I know how you feel!!! I have Hypermobile EDS and have just had a weekend from hell with head/neck pain that makes me vomit. I had so many plans for the weekend, and instead spent it either on the couch or in bed, or in the bathroom. I HATE this condition.

    I would give anything to be able to shop or do housework without being in agony afterwards.

    I’ve enjoyed reading your posts. 🙂

  5. Sarah

    Hey Dani,
    I just found this website, actually I was just diagnosed with EDS a month ago and I am trying to find support and people that understand. My neuro had no clue of what I was talking about for years and it took 10 months to get into the genes doctor. I havent had time to read all of your blogs, but I look forward to reading them all. Hopefully I can start my own, it’s just nice there is a website for me to talk about it and hear about others going through the same thing as I am. I just started neurotin (probably spelled wrong) it has helped my pain SO much. Trying to lose the baby fat from my 1 year old, but working out stopped cold when I bent over and herniated my disc. I was paralized for 20 minutes on my right side, it was weird. Once again I am trying to work out, but so scared of when I will get hurt really bad again. The mild pain I am use to and is worth the feeling of finishing a work out, I have learned to take it easy, they say jump I know I can’t. I can’t do a lot of things, but I hope I can continue school, work (part PART time), playing the piano, raising my 2 sons. I’m hoping on getting a connection to other people with EDS, right now it is very important to me. I felt all alone and “crazy” for 8 years now.

  6. Berenice

    I’m sorry to hear you have to put up with so much pain, I have Hypermobile EDS. I definitely think it helps to focus on the positives. I definitely think that social networking is a wonderful thing! I have lots of supportive friends, too. Some of them don’t understand exactly what it is, but they all make sure I’m okay, which is wonderful. I find doing what makes me happy helps, I’m lucky enough for my interests to lie in writing, reading, cartoons and movies. I feel so sorry for those with EDS who can’t do what they enjoy because their bodies aren’t up to it.

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