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The Many Faces of Chronic Illness

The Many Faces of Chronic Illness

People who suffer from chronic pain often have many faces they portray. As much as we don’t want chronic illness to dictate our life, it does. From what our daily plans are to how we interact with others. There’s so many feelings that come with the chaos of never-ending pain. Sometimes I am able to hold it all together and other times there is no way to hide it. When I was thinking about this I realized there are several faces of chronic illness. I think many of us dealing with Lupus, Ehlers Danlos, Fibromyalgia and other illnesses can agree that there’s never a day that we don’t feel one of these ways.

Lupus, EDS, & Fibro  changed everything. Here are some of the faces I wear:

  • The faking it ’till I make it face
  • The WTF is this now face
  • The I’m too tired to move face
  • The everything hurts face
  • The do they really get it face
  • The I’m NOT crazy face
  • The damn! another Dr’s visit face
  • The will I ever function face
  • The I’m trying to positive although I feel like sh*t face
  • The shut up…leave me alone face
  • The will I ever wake up not in pain face
  • The I wish I could be more help face
  • The smile through the pain face
  • The I’ll do it anyway and pay for it later face
  • The I hope they can’t tell how much I’m hurting face
  • The I’m jealous you’re abled-bodied face
  • The I’d give anything to dance, run, jump, walk face
  • The I’m going to get through this face
  • The I am determined to get better face
  • The thank you for loving me at my most vulnerable face

I know this list can come off as pessimistic or negative but it is our reality. As much a we would like to focus on the good there are regular moments of despair. I get very frustrated and angry at my lack of control. Although I can reel myself back in and get to a positive place it doesn’t negate the many faces of chronic illness. The ups, downs, and in betweens cause many of us to feel crazy. Through it all we know tomorrow will be another day, and though we may be in pain, we will fight for our chance at that one good semi-pain free day.

 

 

***Written freehand with limited edits, Please be kind, Thank you***

Going into 2018 with Continued Hope.

Going into 2018 with Continued Hope.

It’s 2018!!

Let me jump right into my thoughts on 2017 & what I see for 2018…

2017 is kind of a blur for me. A lot changed and I was challenged in ways I never even imagined. I lived in constant pain and depended on people more than I would of ever liked. I always prided myself on independence and good health. Both of those things were stripped away from me. I was taught it was okay to need people and be vulnerable. Two lessons I didn’t think I needed to be taught.

There was a lot of trials with some triumphs. I am going into 2018 with the continued hope that my health issues will improve. This year I want to take on challenges with grace and acceptance of my “normal”, New Year, New boundaries to be pushed and broken.

The past few years have been a true test of my strength. I was taught to listen to my body, put my needs first, and learned how to fight for myself.  I still can’t believe that I finally have some answers, I am [actually] doing better. I started to believe I would always live in intense pain. I am in no means cured but I have improved, I found a Doctor that took me seriously… I have a chance at living, not just being alive.

To say I was scared would be an understatement. I tried to stay positive but it wasn’t easy. Day after day I was battling this beast of a disease, Lupus is hell, Ehlers Danlos is hell, they both have additional symptoms that are crap (excuse my language this is my truth). Here’s the thing, although I am struggling I’ve never thought that this will be forever. I’ve fought like heck. I have made some improvements, and for that I am so thankful.

My issues aren’t gone. I’m still a work in progress I believe one day I’ll be back to doing all the stuff I use to, I  know most of my symptoms will subside… maybe I am being a fool, but I am a hopeful fool. Right now, I still can’t do much but I can do some, and that is better than doing nothing.

I am a blessed woman. There’s no other way to put it. I have a chance. 2018 is my year of improvement, I am going to grow, I am going to prosper, most of all I am going to live. I’ll be happy, I’ll struggle, I’ll accept, and I’ll love like crazy!

Happy New Year everyone!

 

 

***Written freehand with limited edits, Please be kind, Thank you***

Is Being Selfish Necessary with Chronic Disease?

Is Being Selfish Necessary with Chronic Disease?

Have you ever sat back and realized how selfish you are? No matter what you do, you have to think of yourself first, and then you can worry about others. For me, it feels so foreign. I have always felt pride in being that person people can count on. The one that will always listen and be there however I can.  Now, it’s all about me, no matter how hard I try to make it not be. It took me a long time to recognize that it’s not that I don’t want to be that person, but more I can’t be.

When it comes to chronic illness you have to learn boundaries. You have to accept that your health will be affected by the smallest things. Maybe that means being selfish, but I’d rather take care of myself than be sick. People might get tired of the constant talk of new symptoms or the phrase “I can’t because of…”  but this is your forever. We can get better, no we will get better but we can’t pretend to be what we are not. We have to continually monitor our health and there are no short cuts.

A lot of times I feel like a bad mom, wife, friend, sister, daughter, etc. I want to be a stronger force in the people I love lives. I want to listen to crazy things happening or enjoy barbecuing together. I’d love to have energy for an entire day to shop and go out to eat. I want them to know I love them dearly, and try everyday to feel good, so I can get to those things. I have as many good thoughts as I can (because that’s the cure, right!?). I meet every negative with twice as much positives. I work hard to get better so I can be me. I fight to show I care. I get overwhelmed when thinking this might be the new me. The all about me, me.

This isn’t something I can outrun or hide from. I tried, and failed miserably. It only made my health worse. So, I guess the question is can there be balance between maintaining my health and relationships?

The last few years of dealing with all these ups and downs I’ve been taught many lessons. I learned to not be so hard on myself or others. I learned to be okay with not being in complete control of absolutely everything. I’ve accepted some relationships aren’t meant to be. I have accepted that I will always have to manage my disease. Most of all I have realized there are no mistakes, I was suppose to learn something from this, and I am so lucky I did.

I am not going to feel bad. This is the way it is. I love myself enough to know being selfish is what is necessary.  I can love my loved ones harder because I am taking care of me. Any other way just won’t work. Realizing it’s okay to put me first so I can enjoy my life and the people in it has made this whole process a little easier. Getting rid of the guilt has been a challenge that I continue to maneuver through. I’ve learned the best thing I can do is to keep pushing. I refuse to give in, I met each battle with the eagerness to win.

One day it will be second nature to me. I have to take care of me first, so I can love you harder. That’s just the way it goes. In reality everyone has to do that not just those with chronic illness. If we loose ourselves in caring for others we forget how to care for ourselves, and it will catch up to us. I guess the lesson is that it’s okay to be selfish. Not in the only about me way but the I need this so I can do that way. I am going to love me because I am worth it.

***wrote freehand with limited edits, please be kind***

Where Have I been….

Where Have I been….

I don’t mean to disappear. A lot of the times I have to choose between resting, spending time with my family, or blogging. I work hard to manage my energy and time. If something has to give it’s going to be my blog. Not because I don’t love it, this is my favorite thing to do. To have the ability to communicate with others is such blessing. This is just mine, I don’t do it for my family or to gain notoriety, I do it for me. I absolutely hate that any length of time goes by without publishing a post. I am not sure how to rectify posting more consistently but I am thankful for those who continue to join in.

I wanted to write a quick post explaining where I have been. My health is up and down as I have talked in length about. My hope is that eventually my meds will kick in and I can communicate with everyone on a regular basis. I feel so lucky to have found a way to talk with others about lupus, fibro, ehlers danlos and everything in between. Not feeling so alone has been a tremendous boost in my morale. I am so thankful for those who have stuck with me.

I am planning on posting this week. I have a lot to say (per usual). This twisted road seems to never end but I am determined to handle it with grace. I have to find some type of stability. Blogging gives me a way to let it all out and regain some composure. That’s one of the most important steps, having something just for you. So, needless to say I will be putting more effort into what helps me. I’d Love to hear what helps others. Next post will be up Thursday!

 

Have a great week!!

 

 

 

** Wrote freehand with limited edits, please be kind**

Dealing with The Constant Change with Lupus

Dealing with The Constant Change with Lupus

This weekend was a whole new experience for me. Many of us with chronic disease try to fight for any independence possible. Whether it’s going to the store alone or indulging in our favorite hobby. I, for once, had to let go of all reservations and recognize assistance was the only option. For the first time, my husband pushed me in my wheelchair.

It wasn’t a rented or a temporary one. It’s actually mine, prescribed to me by my doctor, because I need it. When it showed up I was not sure how to feel. Should I be happy that I can get out more? Should I be ashamed that I need it? My feelings were all over. I am a thirty-four year old woman that looks healthy but can hardly walk/ stand for long periods. It’s not just Lupus that causes this issue. I also have Joint Hypermobilty Syndrome and Fibromyalgia. The combination makes it almost impossible to do much without pain.

I don’t want to get lost, I am grateful for my wheelchair. My point was more that I never thought it would get to needing one. I thought somehow I would get better. Getting pushed around in my neighborhood on my family walk made me so anxious. I kept thinking what if the neighbors see me? Or what of people don’t think I really need it? I don’t know why I even care. My kids were so happy to have me with them. Their smiles and nonstop talking helped calm me. They seemed so okay with seeing their mom being pushed in her wheelchair by their Daddy.

I realize I need to be more like my kids. They just want to go! They’re so resilient. Anytime I’m unable to do something because of Lupus or any of my chronic issues there is no hesitation. They don’t get upset, they don’t tell me they wish I was a “normal” mom. That’s me, I want that. I get upset. I am embarrassed.

It’s silly really, why should I be shameful of this? The lack of control is obvious. The ever changing symptoms are constant. Nobody would choose this. All the the adjustments you have to make, the relationships you loose, the dependence created. I’d rather just not go out. No walking equals no wheelchair which means no dependence.

You know what really happens though? I miss out. That day is forever gone. Wasted. I don’t get to enjoy the night air or hear my kids laugh. I miss out on life. I’ve tried to be tough through this. I have fought. I will continue to fight but I have been humbled in knowing it’s okay to need help. I lean on my loved ones and let them know how very much their support means to me.

I have a wheelchair. I need a wheelchair. I am not limited because of it, I am getting the chance to experience life in a whole new way. I am willing to make the adjustments needed in order for my quality of life to be at it’s best. Maybe it’s not what I thought it would be, that’s okay. I get the chance to live at the best of my ability. I refuse to give in, I am not stopping. 

 

 

 

 

 

*****please be kind, wrote freehand with limited edits****

Bonding with Others who Have Chronic Illness

Bonding with Others who Have Chronic Illness

Most of the time when I sit here I simply write what comes to my mind. I am not a professional in any sense. I am just a person who created an outlet because I felt alone. It’s not that I don’t have loved ones that care, it was more like they don’t understand. I feel lonely and isolated. They don’t mean to exclude me, they just don’t get it. That has caused so much anxiety within me. I felt confused and almost ashamed of this nasty beast called Lupus. It has taken me up to this point to be open and unapologetic. I am ready to be an open book, I want to connect with others going through the same issues, and most of all I need to accept that this is not my fault.

Yes, I blamed myself for this. I played the could of, would of, should of game. What if I did this or that instead. There were so many questions that would swirl in my head when all of this first started. As my disease progressed I felt overwhelmed and clueless as what was next. Especially because doctor after doctor made me feel like I may just be a crazy woman. I, for sure, thought this could all very well be all in my head. I thank God I had the fortitude to not give up and advocate for myself.

The short story is this, I don’t want any person to feel alone when dealing with chronic illness. There’s a whole community of people that need to connect. We all need to lean on each other because we are the ones who truly get it. In the last month I have just laid it all out there. I have talked about my health with an odd confidence. In the strangest way it made me feel more in control. I have been diagnosed with a list of issues but the top four would be: Lupus, Fibromyalgia, Joint Hypermobility Syndrome, and IBS. I can finally say that without being scared of judgement.

A lot of people fear what they don’t understand or put down what they don’t know. Well, something I never thought I would need came this week, I received my wheelchair. This was a huge step for me, I have fought getting one. I was encouraged to move forward but I was scared. I didn’t want people to see me in a wheelchair and think I didn’t need it or even worse think I was disabled. You know what? I am disabled. I said it. I need the assistance of a wheelchair, I need help from others, I am unable to do daily tasks on my own, and I refuse to feel shame any longer. I need to focus on my quality of life. Lying to myself or being fearful of what others think will only hold me back from living MY best life.

So, I (kind of) went off on a random tangent. I figured if I have these thoughts running through my mind others may be experiencing the same. I am only one person trying to get through everyday with chronic pain (among other issues). I’ve realized how much I value building relationships with others experiencing this. People that without question after question know what you’re describing. You guys are my people, we get each other and I need that. The encouragement that together we can get through it.

Tomorrow is going to be another day that we all are blessed enough to live. We may not get to run outside, climb mountains, or simply clean our homes but we get another day. I am going to enjoy my children’s laughter, hold my husband as tight as my body allows, and indulge in the healthiest unhealthy food I can. What will you do? My hope is there is at least one thing that makes your day shine a little brighter.

Stop Playing Mind Games with Yourself

Stop Playing Mind Games with Yourself

You ever play mind games with yourself? You tell yourself whatever ever you’re feeling isn’t real and you have the ability to somehow control it. You have the urge to escape reality, bc the constant lack of control causes you to feel crazy?

It’s all in my head… it’s all in  my head…. Wait, is it all in my head??… it’s still there… maybe it’s not all in my head. Maybe just maybe I don’t have the ability to control it… Sooo ummm what do I do now?

The continual barrage of thoughts makes me feel even more insane. Having the desire for answers.. a permanent solution.  In those aching moments  I look around and see just how great my life is. I have so much to be thankful for. So, I can’t get over this… these annoying, chronic, life-altering issues. I mean hey, I am able to be here, present, I am able to adjust.

You have to realize, you can’t always make what you want happen. Sometimes life has other plans, lessons you need to learn. My advice…work hard, keep your head up, and enjoy the journey. I never expected my life to take the turn it did. Gradually every. single. thing. changed.  The greatest occurance through all this unwanted change is it’s just what I needed. I learned to let go, to trust, to be unapologetically me… I learned what to focus on…I learned that I am stronger than I ever thought. There were so many lessons I needed to fully grasp.

The hardest part is the mind game. You have to train your brain to be think the way you want it to. I’ve realized a lot of my thoughts hindered me. Although I always prided myself on being mentally strong, there’s some stuff you can’t just be strong about.

There’s times you need to feel the hurt, be in pain, wonder why… if you are able to rise from that then those experiences make you strong. They make you truly understand the depth of hurt and what resilience is.

Yes, sometimes I want to change my circumstance. I want to proclaim, today I will not be in pain!  I’ll be able to do whatever I choose to and will not have any limitations. Then, something happens and I am tossed back into the reality of my constant. However, there is something different, something I could’ve never EVER gotten without this constant pain in my a**, it’s one of the most precious gifts besides love and family.  I have appreciation and gratitude.

I VALUE myself, my time,  and my loved ones.

It’s a crazy wonderful feeling. To love and hate something so life changing all at once. I want to run, jump, and play but I know it’s not possible. I am ,however, still alive and capable of doing soooo much. I have one disability combined with a few other not so fun stuff but I know there is worse. I bare this with pride. I am appreciative for my lesson, for my reason to grow and prosper.

It may be hard, you may even hate yourself until you get through it. Just don’t forget there’s always a reason, a lesson, or  valuable insight. Don’t ever give  up, KEEP GOING!!

 

 

***Please be kind, wrote freehand with limited edits**