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Category: Joint Hypermobility

The Emotional Part of Chronic Illness

The Emotional Part of Chronic Illness

I wasn’t going to post this week, I didn’t even want to write. This is the part we all want to hide. When we feel like nobody will get it and there’s no way to explain it accurately. I could of stayed away, just disappeared till my mind didn’t feel so frazzled and my body didn’t feel broken. Let’s be honest here though, when will that be? When will I feel whole? Where feeling like I am half myself and half zombie wasn’t the normal. I say to myself ok, you’re having a setback, but in truth there’s always some type of something to deal with. This is the part no one with chronic illness wants others to see.

I promise I am trying my best. I tell myself this is okay, that I will progress even if it’s slowly. The hardest days for me aren’t the days I deal with physical pain, it’s the ones where my mind betrays me. The times I feel lonely and sad. Dealing with constant pain is a continuous battle. We fight to love our broken bodies, to smile through the pain. We want others to see us as people and not pity us for our circumstance. The pain doesn’t go away but at least we have our brain, our thoughts, our ability to overcome it because we are mentally “strong”.

What does that even mean? I feel weaker than I ever have. I am annoyed because I am laid out most days, hoping to at least have enough energy to interact with my family, and smile or laugh. I get pissed because I feel so alone. Desperate for people to want to be here but at the same time not wanting anything to do with anyone. Feeling the guilt of putting everything on my husband and to top it off I can’t even deal with stress. I mean what kind of wife am I if I can’t even be there for his needs. I never thought I’d be this person, I am not talking about the illness’s, it’s the mental part.

I am strong, I am capable, I am independent, I am….. none of those things anymore. It’s all been stripped away from me. I have been forced to ask for help, to be vulnerable, to accept the days I can’t do anything. Does anyone ever get use to this or will this always be a battle? There’s a reason this is the side we don’t want anyone to see…we hardly understand it ourselves.

The fears, regrets, and anger that comes with all this is debilitating. I have my days,weeks, or months where I just don’t want to deal with another day of not being “strong”.  I promise myself I’ll make tomorrow better. That there’s a silver lining to any of my worse days. That I know there’s other people going through so much worse. That I WILL get through this. I have to pace myself and remember there is very much a mental aspect to chronic pain. It’s okay to have weak days, the days that hurt to think or feel love.

I realize the power is what you do with those days, how we forge on, what we choose to do next. So, yes I have been having a not so good few weeks, and yes I got caught in the turmoil, but today I choose to not hide from it anymore. There’s no shame in this. Not for any of us. I refuse to let this determine how I value who I am. I will allow myself to feel all the ways I need to so I can recover, grow, and accept my normal.

 

 

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

Goals for 2018 *[Plus HUGE Announcement]*

Goals for 2018 *[Plus HUGE Announcement]*

Every year I set goals for myself. They aren’t so much resolutions but more so accomplishments I’d like to reach in the New Year. Sometimes I meet all of what I set out toward and other times I fail miserably. These include any type of goal from small to big, simple to complex. For me, it’s about setting them and working toward it.  My goals range vastly. This year I am focused bettering the quality of my life. I am determined to take the steps toward self-improvement. Here’s a snippet of what I am setting out to accomplish this year…

First things first, I want to start my day every morning with some discipline and end it with relaxation. One of the simplest ways I know I can accomplish this is simply making my bed Every. Single. Day. (or as often as possible). This is a way for me to have structure combined with some calm. This is something so easy that I have always attempted. One year I will actually do it regularly, I use to but a lot has changed.

On that note, I plan to get out of my house at least once a week. I know that may sound weird but bare with me… between Lupus, Ehlers Danlos, Fibromyalgia, and all the o’ so fun symptoms that come with them I often find myself closed off from everything. If it doesn’t have to do with my husband, kids, or the family the refuses to let me hid I am a hermit.

I can go weeks without stepping out my front door ( I know that is so not okay). I have to live a better quality life, I need to get out. Even if that means I get pushed in my wheelchair. It’s unhealthy for me not see life outside my home. Whether I’m out for ten minutes or an hour I HAVE to get out.

This leads into my next goal. Through all my health issues I found my voice, I learned to advocate for myself, and was forced to research A LOT of information. I realized I’m not alone, many of us with chronic illness go through the same difficulties. My biggest goal in 2018 is to launch my business venture helping others with similar issues.

Let me give some details, as Lupus progressed throughout my body I began to realize I had a reaction to certain foods, makeup, lip balms, etc. After a TON of research and pain I finally narrowed it down. I discovered I developed a gluten intolerance. I found it challenging to find quality gluten free items including vitamins, beauty, and other essential products. It was alarming to me to find just how hard it was to get what I needed.

I am proud so say with the help of my husband and mom we created a company that will offer ALL gluten free products. My constant research has paid off and I want to share it with everyone! The line will include products like face wash and lip balms with the addition of more items throughout the year. The great thing is these products aren’t exclusive to people struggling with Lupus or a gluten intolerance.

To say I am excited and feel blessed would be an understatement. Having the chance to help others that struggle with similar issues is such a blessing.

We will be launching online early this year.  So, I guess this is my impromptu announcement…

 

NixEssentials.com coming soon!!

 

 

This year is going to be a good year. I can feel it in my bones. I am looking forward to so much. I’m determined to soak in all I can. My hope is that each of you have set goals and are willing to work your a** off the reach them. No matter if they are big or small, simple or complex, GO FOR IT!

 

 

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

Learning to Celebrate Small Wins With Chronic Disease 

Learning to Celebrate Small Wins With Chronic Disease 

I feel like I continually write about the challenges of chronic illness. It’s often hard to see passed all the pain. How is it possible to be happy when your body is betraying you? It can be hard to celebrate any type of “win”. What normal person celebrates getting out of the house or taking a shower. Those are just things any regular person does. It’s easy, right? For you or me those are wins. That means we conquered something even if it causes pain later. We did something for us. 

I’m determined to focus on good. It’s the only way to get through all the ups and downs. Between Lupus and Ehlers Danlos I often get lost in the harsh symptoms. I forget to celebrate the wins even if they’re tiny. I am elated to say, after detailing my concerns with my doctor and adjusting my medications, my hair is not falling out in clumps anymore!!! Happy is the only word that can describe how I feel. 

FINALLY!!!

It’s been about three years of my hair falling out. I, at first thought, it was due to me giving birth. It happened with my two boys, as time went on the amount of hair became alarming. I thought wow, this is happening for an extended amount of time.  I reasoned it was because I was older or maybe my hormones were different because I had a baby girl.  Silly right

I know now I was naive in thinking that. I see things so differently in hindsight. There were other symptoms that I didn’t recognize,  I had extremly high levels of anxiety ( didn’t know it was anxiety) and again thought hormones, because I breastfed for eighteen months (yes, 1.5 years). In my mind there had to be an explanation for everything. I couldn’t go in the sun because I had sensitive skin. I was tired because I was a stay at home Mom of three plus I wasn’t as young as when I had my first two.  I really had a reason for everything. 

It made so much sense to me at time. I realize I was kidding myself.  I didn’t  give myself time to recognize there was stuff going on beyond my control. I needed help. 

As my diseases progressed other symptoms creeped in. I had a A HA! moment at one of my doctors appointments. All this “stuff”, even way back when, was due to my diseases/ syndromes progressing. I was so clueless of all the symptoms being linked or how much it could rule my world. 

In a odd way I was relieved. 

Ummm so, I’m not crazy!? I actually have REAL things going on.  Talk about a sigh of relief met with a gasp of oh my this is going to be forever?? 

It’s been challenging. There hasn’t  been a day that Lupus, Ehlers Danlos, or the unpleasant symptoms that come with them hasn’t affected me.

However, I feel like I’ve had a small victory. I have to celebrate the ones I get. 

I got my hair back! Well, not all the way but it’s looking a heck of a lot better. When I shower I’m no longer afraid of seeing handfuls of hair. Honestly, barely any falls out! 

It’s seriously feels like some kind of miracle!

I am new at this. I’ve had health issues since my daughter was born but went undiagnosed. The journey has been long and tidious. Finally being diagnosed has been life changing. My diseases/ syndromes are getting under control and I feel like I’m getting part of my life back. 

I know I’ll never be where I was, although it is the goal. I’m living a new normal and I’m thankful for the passion it has brought to me. All my fellow spoonies I’ve met is one of my biggest blessings through this. I’m not alone. There are people that understand. I can’t thank you enough. 

What’s the point of the post? Simple. Believe it’ll get better. 
Let’s appreciate today, yesterday, and tomorrow. It’s another day to fight and figure out how we can help ourselves. My small win is my hair. Yours could be anything, from getting out of bed or talking with a friend . We have to appreciate what we conquer, know a win is a win, and face our challenges with hope and determination. 

It’s possible. It has to be. 

••If you’re dealing with the same issues please don’t hesitate to message me. I am active on Twitter @_crazywonderful or you can email me. I will tell you what my doctor prescribed and maybe it will work for you.••
*** wrote freehand with limited edits, please be kind, thank you***

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.

Is it Possible for Relationships to Survive Lupus?

Is it Possible for Relationships to Survive Lupus?

I was recently asked what has changed the most regarding my Lupus diagnosis. I replied “everything” because in reality that is the exact truth. There’s not a part of my life that hasn’t been touched in one way or another by this disease. I take medicine daily, I don’t go in the sun, I avoid being out of the house too long or at all, I lean on others more than I ever have, I lack energy, I eat completely different foods, and on & on. The list is long and it gets a bit depressing to talk about. After thinking about the question I realized there was one key word. What has changed the most... and I immediately knew it was my relationships with others. Simply said, the ones that matter will be there and those that don’t won’t.

Ok, okay. It’s actually not that easy.  There’s a lot of growing pains and heartache. There was for me anyway. I learned a ton about myself, the people I thought would be there, & the people that actually were. The thing is, nobody is really prepared to go through anything like this. The daily ups and many downs of a chronic illness. The constant cancelled plans because you can’t move without pain or the continuous need for help .The desperation for understanding with acceptance and unconditional love. It is a monumental type of thing to take on, you can’t half-ass your love for someone with this disease. That also goes hand in hand with the person experiencing Lupus not being able to put energy into something that will cause them hurt or stress.

Let’ just put this out there as clear as possible, Lupus and stress just don’t go… even more so Lupus and sh*tty people are a big o’ no no. Let me spell it out IT’S NOT WORTH IT. There are only so many hours in everyday. We (people with Lupus) sometimes (most of the time) only get a very little bit of time everyday to feel somewhat good. I will be damned if I am going to waste it on people who don’t value me or me not value them. What would be the point!? Spend your time with those you love and love them fiercely!

I was really surprised by the change of most of my relationships. There were two people that didn’t surprise me at all and I am so very thankful for them. There is one person that has been there for it all, the very worst of the sicknesses and aches. The person that will pick up the pieces when my brain just can’t. In all honesty, I only have a handful of people that continuously FOUGHT to be by my side. No matter how hard I tried to push them away. When I say a handful, I mean exactly five people.

I use to think you needed an army of people or the more that were in your corner the happier you would be. Although my circle has always been small, it’s teeny tiny now… maybe like half a circle. I started to recognize patterns in people and it zapped my energy. I felt completely drained after being around them. There were also the people that if I wasn’t able to offer some kind of value to their life then they didn’t need me. Like me, just being low energy and sick but still me was not enough. It was such a confusing time. Not only was I learning I have some serious health issues but I was also learning how to deal with the unexpected change in all my relationships.

There were some people that I firmly believed would always be by my side no matter what. That there was no way in heck we weren’t going to be an active part of each others lives. but somehow, someway they just weren’t there. It’s as though they vanished. Why? I don’t know. They say one thing. I see another. I still love them dearly but those relationships have to fall to the side. I realized I HAD to be selfish and if those relationships could not survive my health issues then maybe they weren’t as valuable as I thought.

So, What is the biggest change since Lupus has slowly taken over my life? The people I have in it. I am more aware who I spend my time with, who I let in. I have a clearer picture of the people that love me unconditionally and are okay with me being vulnerable. I know who I can lean on and trust. 

It’s another one of the twisted weird gifts Lupus has given me. I’ll forever be grateful for each and every person that has been there for me through this. That love is something I can’t ever put into words. For them and for me I am going to keep fighting like the warrior I am.

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**