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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***

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***

Tired of Lupus & Misconceptions That come with it

Tired of Lupus & Misconceptions That come with it

The first time I ever heard of Lupus was when I was in high school. A friend was diagnosed and all I knew about it was it made her tired. If I am being completely honest I didn’t give it much thought. Whenever I saw her she seemed “normal” enough. There wasn’t anything I could see that concerned me, so like many of us I assumed it wasn’t a big deal. She was such an ambitious girl, there was so much life in her, and I thought if something was truly wrong she’d talk about it. We weren’t the best of friends but I always felt close to her. I was naive and ignorant. I didn’t even know what Lupus was or how complex the disease could be.

There are so many misconceptions with people who have Lupus. They don’t look sick, they sleep too much, maybe they should take more vitamins, what if they try this or that. What most miss is there is a whole world going on behind closed doors. The way we are dealing and trying anything to heal. I didn’t recognize that with my friend. I so wish that I did. Not that I could of done anything or she’d want me to be there, but at least she’d know I was trying, that she wasn’t alone.

People with Lupus are often misconceived as private or unsocial. What many don’t understand is it’s an isolating disease. Lupus usually does not come alone. There’s a whole list of other side effects and accompanying symptoms. Some of mine include anxiety, fibromyalgia, and IBS. The list is much much longer [but that’s not what this post is about]. It’s much easier to hide and be with yourself, instead of having to explain what is going on or why you can’t do certain things. The thought for me is “if they don’t see me they won’t know, and I can still seem normal.”

That’s another thing the word normal. That’s probably the biggest misconception, you look healthy so you must be. It is so annoying to feel like you have to constantly explain why you are hurting. That there are real consequences for certain actions. I get so overwhelmed with others assumptions it interferes with me concentrating on myself. Am I suppose to make myself look or act sicker so they can “see” Lupus?? [not gonna happen].

Going off this thought, medications don’t take it all away but they help. There’s a lot more that goes into managing Lupus. My daily decisions can effect me for weeks to come. From how long I walk to what I eat, all of it has become a conscious decision. All the way down to when I shower. There’s no room for error and even if I somehow have a “perfect” day that doesn’t guarantee I will feel well. There is no cure for Lupus. All I can do is manage it and stay positive.

POSITIVE. Do you know how many times I have been told my mind will help heal me if I am positive?  Let me just say I am no where close to a pessimist so if it all it took was to be positive, I’m positive I would be healed (like what I did there). I almost drove myself nuts thinking this was all in my mind. There came a time I had to face reality. Something was very wrong and I needed medical help. People with Lupus aren’t negative, they are lost. The havoc your body feels even when you baby it is all consuming. Even when you have a positive mindset there is more that has to be done. It’s not a cold that is going to go away, it’s a forever life issue.

I can only imagine the difficulty my friend had being diagnosed in high school. I did not start experiencing symptoms until after the birth of my third child. From what I understand the disease was dormant and major life event woke it up [child birth]. Everyone experiences Lupus differently. If there is anything all my countless Doctors have agreed on is no two cases are the same. So when people look at me crazy because their brothers-wife’s-mom-sister’s-friend has Lupus and is completely fine because this and that worked  for them, and I say it didn’t work for me, doesn’t mean anything except what helped them didn’t help me.

These examples are the very tip of misconceptions people with Lupus go through. Being diagnose in my thirties I feel like I had it a little easier than my friend. I can look back and appreciate her strength. I still don’t know how intense it was for her but that word [Lupus] holds so much significance for me now. The next time I heard someone even say it is when my primary care physician became concerned about the possibility. I had no clue how much the word I paid no attention too way back when would change my world.

My realization is, I can’t expect people to not have misconceptions to a disease I knew hardly anything about. I didn’t even learn what it really was until going through the process of being diagnosed. Most people mean well. I’ve learned to embrace their advice as concern and dismiss their ignorance as just that, not knowing better. Misconceptions will always be there but it could be worse. I have a chance to educate those who truly want to learn more and move on from those that know it all already. Lupus is not the end for me, far from it. It’s the very beginning.

 

 

 

 

***Wrote freehand with limited edits, Please be Kind***

 

 

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***

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***

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.

Three Tips To Help Deal with Lupus

Three Tips To Help Deal with Lupus

Let me start off by saying that it took a long time for me to feel like I could enjoy life again. Not because I didn’t want to, but because I didn’t know how to with all the pain I was in. There were so many days lumped together that became a blur. All I hoped for was my pain to ease and my mind to clear. Time after time I just wanted comfort. I hoped there would be a day I’d go back to “normal” again. Then, one day I finally realized this is my new normal, this is my life, and I had to find a way to live it the best way I could.

I am not an expert when it comes to Lupus. I am just a woman who has it and tries countless things to live my best possible life. What works for me may not work for you. That is completely okay. Everyone’s experience with this disease is different. I just want to build a community where we can talk and be there for one another.

There is a lot of things I have changed in my life in order to adjust. Instead of giving you a long drawn out list that you barely skim through I want to share three quick tips that have helped me put my mind at ease. When I started progressing with Lupus I felt lost and very alone, even with loved ones around me, I still do at times. It can be very isolating to know something is wrong but not be able to figure it out. In my case, it took two years for a diagnosis and to be put on the correct medicines. I am not perfect, I have more setbacks than I’d like, but I am LIVING. I refuse to stop pushing, with these three steps I tend to be able to do that with a little more grace.

ONE: Listen to your body.

I know that seems pretty self explanatory but when you have Lupus your body/ mind can feel like its playing tricks on you. There are so many ups and downs, twist and turns, it’s easy to feel discombobulated. What may feel like a small headache can turn into a full blown flare, or you feel like you need a nap but skip it…because do you really need it?? You may think you can totally push yourself to do that extra chore or time with friends, but you end up being out of it for days, weeks, or longer. That’s the thing I learned from Lupus it’s never a couple hours of recovery when you misstep. It takes a lot of time to heal. It’s an exhausting disease, if you feel tired then sleep, if your body say’s no gluten then don’t eat gluten, if it hates the sun then stay out if it. There’s things you can do to try and prevent flares but it is vital you get in tune to what your body is telling you. Once you start listening to your body you’ll be able to communicate clearer to your loved ones and Doctors.

TWO: Don’t waste your time.

Lupus warriors have limited energy. A lot of times our days are dictated by how we feel. Don’t spend time doing things you hate or with toxic people. This was probably the hardest step for me. It is especially hard if you’re a “yes” person. I learned to focus in on what really mattered to me, what/ who I valued, and with those who felt mutually. It’s not worth it to constantly be making yourself sick because your loved ones don’t get it or to feel guilt. You have to learn to love you. There’s no other way. Time is precious.

THREE: Stay away from stress.

This may not always be avoidable but when it is STEP AWAY. Stress is almost a sure way to have a flare of some type. Evaluate what are absolute things you need to be thinking about and what you can remove. This can be from dealing with people to things. If it stresses you out and you don’t NEED it, delete it. I know it’s not always that simple but with practice it gets a bit easier. An extra tip is I clearly stated to all my loved ones that stress is a no-no for me and I didn’t want any part of it. They either respect it or don’t (if they don’t refer to tip TWO.)

Look, Lupus isn’t going  to magically go away. Although we all wish it would. It is a part of our lives that we now have to consider at all times. I love myself enough to make the adjustments needed to be a better warrior, wife, mom, sister, daughter, and friend. I hope you do the same. We are not alone, we have each other, this network of people fighting to live their best lives with a nasty beast called Lupus. Just keep fighting… KEEP GOING.

 

 

 

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