People with chronic illness often use the words “keep pushing on” or “keep moving forward.” We use these words because we know that if don’t keep moving, our diseases will win. I often wonder if when we say these words and practice them whether we actually believe them. I am not sure that I always do.
The fact is, it is hard to keep moving forward, mentally and physically, when you are so tired. I am tired of being sick and I am tired of trying to juggle my health demands with my personal and professional lives. I know that people who live with chronic illness get what I am saying but healthy people really do not.
When you are sick, being tired has a different meaning than it does when you are healthy. When I was healthy, tired meant feeling exhausted because of school, work, or sleepless nights taking care of small children. But now, being tired means being consumed with fatigue all the time. I wake up exhausted and it does not matter how many hours I slept. My body often feels like I am lugging around a really heavy box because I am so overextended. I am regularly tired to the point of tears because I cannot figure how to function with all the pain and fatigue.
I am emotionally and physically tired. I am tired to my core and to my very existence. And I don’t know what to do. Simply saying “keep pushing on” or “keep moving forward” is a pretty difficult feat. Just thinking about all that life throws and then trying to juggle that with my health demands is awfully draining.
Showing progress is a relief and it makes moving forward easier. But the setbacks, they send me in the opposite direction. They make me even more worn-out and I am discouraged. How do I tell my family, my friends, my job, that I need a break? There is no way to do that. There is no time – life goes on even though I am sick. I still have to work, take care of my home and family, and I still have function just like a healthy individual even though I am not healthy.
In my mind, I know what to do: “keep pushing on” or “keep moving forward” – sounds simple to the average person. I know this is what I am supposed to do and I have done it before. I know that better days are ahead. Chronic illness is full of ups and downs – good and bad days. I know all that. I also know that the solution is to keep moving forward and try to not let it all get to me. Right now, it is quite hard before I am feeling defeated. I really am tired.
So many thanks to Lana for the opportunity to share a guest post at her blog. I hope this post offers something useful and inspiring to her dedicated readers.
When in Doubt
There is a spot running in my local TV market that is meant to bring awareness to mental illness: a man asks a woman about her weekend, to which she replies that her depression makes some days good and some not so good, this past weekend was a not so good one. There is an awkward pause. Voiceover: avoiding a difficult conversation only adds to the stigma mental illness. Then the man says, “Do you want to talk about it?”
I really love this spot. It attempts to improve a situation I find myself in regularly, the how are you? conundrum. I’ve been on both sides of the conversation, but because I’ve had a chronic pain disease for 7 years, I am usually the one making my friends uncomfortable.
A couple of well-wishers have shared what not to say to your friend with invisible disease articles with me over the last few years, which I truly appreciate as a gesture of support and love. I really do understand that it is hard to know how to approach me. I thought I’d take this opportunity to share some of the best advice I have seen:
WHAT NOT TO SAY
- But you look so good! To be honest, I’m a little torn about this first one. My ego likes to hear that I don’t look as terrible as I feel. However, this usually contains an undercurrent of you can’t be as sick a you say you are. When in doubt, tell your friend that you know how hard it must be to maintain such a positive exterior, considering what pain they must be in.
- My friend’s aunt had (insert generic health concern), she used (insert magic supplement, diet or exercise) and is completely healthy now. This can be hurtful, even when you are trying to be helpful, because it assumes that your friend has not tried every possible cure, twice. Trust me, if it is out there, I have googled it 100 times, talked to 3 Doctors about it and tried it anyway. I have Doctors for medical advice and diagnosis; friends for consolation and love.
- Illness is caused by stress, you need to learn to relax. Did you notice the tick I developed just now, when you said that to me? While many illnesses are exaggerated by stress, they are rarely caused by it. Best cure for stress I’ve found is feeling like you have the understanding and support of your family and friends.
WHAT TO SAY
- I don’t know what to say, but I care about you. This means the world to me. It shows that you understand the impact my disease has on my life, but doesn’t assume anything. Friends are often unsure what to say, and therefore say nothing at all. This makes me feel alone and unseen. It is encouraging to know that someone is paying attention and cares, ever after years of illness.
- I’m bringing dinner Thursday. Can you eat lasagna or soup? Chronic illness never ends, but the support does. As much as I appreciate my friends saying “Let me know if you need anything,” I feel guilty taking advantage, or even admitting that I need the help year after year. I won’t call unless I am absolutely desperate. The friends who just show-up with groceries, send cards, or insist on babysitting, are miracle workers. They will never understand the magnitude of what their kindness means to me and my family.
- You are going through so much, yet you still have such joy. How do you do that? The opportunity to think about my disease through a positive scope is a rare one. I have found that my comrades in chronic illness have a wisdom and spirit that should be shared. Ask the big questions and settle in for an inspiring conversation.
That said, I would be amiss if I didn’t make it clear that I know what words hurt, because I have been there. But I also know what heals, because I have been the grateful and often undeserving recipient in an endless chain of support. So please be kind, because everyone you meet is fighting a great battle, even if you can’t see it.
I hate clowns and I have hated them since I was a kid. I was also afraid of them when I was a kid. Unfortunately, my four year old has the same fear. As an adult, clowns still give the creeps. Living with chronic illness, sometimes I feel like a clown who can’t wash off her makeup.
I say this because sometimes I don’t feel like I am in control. The flare-ups, the fevers, the pain and other symptoms are often out of my control. They also make feel silly. I am only 37 years old and sometimes, when I stand up, I am walking like a clown. My swollen feet feel like I am wearing those big ugly clown shoes. My swollen face and dry eyes – it is like I can’t wash that clown makeup off. My swollen wrists and hands, I feel like I am wearing an ugly polyester clown outfit that makes my skin crawl. My knees and hips ache as if I have been sitting too long in a tiny, red and ugly clown car with way too many clowns in it.
I am not a happy clown either. Aren’t clowns supposed to be happy? I am a clown with a sad face. That is because of the depression that sometimes really hits me like a dodge ball. There am I, the clown that was hit by a dodge ball. Seriously, who the heck wants to be silly, ugly clown that people laugh it? That is depressing in of itself.
I managed to find beauty and humor in living with RA and fibro. I have learned to be stronger than most. Lately, however, with the depression, it is been harder to be strong. I am sick and I am not going into remission any time soon. I used to think that once I accepted the fact that remission wouldn’t happen, I would be free from the burden of desperately wanting remission. Even though I know and accept this now, I find myself wondering why life is so unfair.
That is why sometimes I feel like a clown who can’t wash off her makeup. I feel like I am a fake. Before when I thought remission was possible, I felt stronger. But here I am finishing my fifth year with RA. While I am not as bad as I expected to be, I am not better. After a while, something like that takes a toll on a person. The thing is, I still hate clowns and I feel like one right about now.
I want to feel strong like I always have been but life has thrown some nasty curveballs at me in the last few years. Illness, financial issues, my brother’s illness and death, my mom’s stroke and marriage issues. I am finally coming up for some air but dealing with all this stuff and looking confident is a disguise.
I finally realized that I don’t have be strong and confident all the time. Except that’s another reason that I feel like a clown. I want to be confident and I want the people that I know to see me that way but lately, it is not possible. I have accepted that I am chronically ill and that I am depressed but it is hard stuff.
Acceptance is hard thing. I have spent so much time playing the tough and now, I just feel like a fool – a clown who can’t wash that makeup. And I hate clowns so much. So now, I have got to work on not being a clown. That should be all but easy.
A few evenings ago, I stood in my kitchen making dinner when a rush of nausea and dizziness hit me. I leaned on the counter for support. I had stood too long and my body was rebelling. I left the hot kitchen and headed to my leaving room to sit down while the episode passed. By the time I had sat down, I was sweating profusely. I asked my 13 year old to grab an icepack from the freezer. I placed the icepack on my forehead and rested for a bit.
I finished making dinner and the rest of my evening was shot because I was too tired to do anything. I even left the kitchen a mess until the following morning. I was even too tired to ask my 13 year old to load the dishwasher.
Being in the kitchen and preparing meals used to be one of my favorite things. These days, my kids are lucky if they get one home cooked meal per week. Usually, dinner consists of whatever is fast on most nights. When I am able to prepare a home cooked meal that requires effort, I feel like I bring some normalcy back in our home. Or when I am able to keep up with the housework and laundry, it seems like my kids can have a normal mother. Normal is what I strive for but it is not easy and it doesn’t always work in the way that I want it to.
Despite my RA and fibro being somewhat controlled, I have learned that normal is the exception to the rule. When I try to make my life feel normal, I end up paying for it. I am a busy working mother and I am raising two very active boys and sometimes, I can barely keep up with everything life throws at me. Something as simple as preparing a meal should not be so hard but when you live with chronic illness, it is big feat. It is as close to normal as I can get.
When a person is healthy, their life and identity is built around what they are able to do and how their body helps them do it. When you are sick, you start to doubt yourself. You want some control of your life and you keep striving to reestablish normalcy. After all, chronic illness changes what normal is and most of us don’t like the type of normal or the lack of normal it brings.
I am still striving for normal even through normal can be hard. Normal is just the little things like preparing a meal that involves standing for long period without having to rest in the middle of it or after it. Normal means that I can clean my home without having to rest every half hour. Normal means that after doing laundry I can actually fold it and put it away. Normal means that I can spend the day at a park or beach with my kids without the heat or cold getting to me. Normal means that a long drive isn’t tiring. Normal means that my kids get to feel what it is like to have a mother who can do so much more than I can do. Normal means that I feel like I can do the things that others can do including creating a work-life balance despite living with chronic illness.
I strive for normal everyday and some days, it can be pretty hard. Other days, I get pretty close. And once in a while, I have a rare day where normal doesn’t wear me out and it allows me to feel like any other member of the human race. Normal isn’t my reality but I keep striving for days where it can be.
I recently prepared an article about how chronic illness has changed me. I have written articles on various topics related to chronic illness including its role in the workplace, its effect on depression, exercise, sleep, dealing with flare-ups and relationships. I have even written about its effects on intimacy. While many of these topics have been hard, especially because of my own personal experience, I never imagined that writing about how chronic illness has changed me could be even harder. I found myself looking back at the person I was prior to rheumatoid arthritis and fibromyalgia and what I realized was that, I no longer knew that person.
Having to think about how much I have changed since chronic illness became a part of my life, I realize that being sick is hard work. Sometimes, I want to just jump on a podium to let the entire world know what it is like. Not only is it hard work, it is frustrating to live a life with constant pain, fatigue and just the not feeling good sensation.
I am doing the best I can
So yes, living with two chronic illness is hard work and I am doing the best that I can trying to maintain a balance between my life and the rest of the world. Healthy people have no clue what we go through. I am not sure what people see when they see me. You know the old saying, “But you don’t even look sick?” Either I am good at hiding it or I really make coping look easy.
I wouldn’t wish what I go through on a daily basis on my worst enemy. Although sometimes, I wish that people could walk in my shoes so that they could truly understand what I endure on a daily basis. Or perhaps someone could borrow my pain, sickness and fatigue for one day so I can feel what being healthy is like since it is something I barely remember.
When I am thinking rationally about living with chronic illness, I realize it is my burden to bear. Every single day with RA and fibro is trying on my body and taxing on my soul. I try to push aside what I am feeling so that I can function like a normal human being but no matter what I do, the pain, sick and fatigue manage to catch up with me. So yes, I am managing my health but it is hard work.
Sometimes, it is hard to keep going. It is no wonder I became depressed. When you are sick all the time, it is easy to lose sight of the big picture. It is hard to figure out what your abilities are and you lose confidence. Sometimes, it is in the day to day stuff and other times, you are forced to look back at the pile of missed opportunities. Missed opportunities are big and small – like missing your child’s match because you are too sick and tired to attend or giving up your dream to attend law school because it would be too much with all you already have on your plate.
Every day is a battle with fatigue and pain. You struggle with expectations from others – family, friends, employers and coworkers- but mostly, you struggle with the expectations you have for yourself. How come something as simple as keeping your small home clean is difficult when someone else – your own mother- has a bigger space they manage to keep clean? I think my biggest struggle is that I am still trying to be the person I was before I got sick and it is something that is difficult to do. There is no way I can ever be that person again.
Yes, it is hard work
There is no question that being chronically ill is one the hardest jobs you will ever have. Illness takes a great deal of time and energy from you and even out of your day. Meanwhile, you still have to tolerate it to function in a healthy world.
Incurable, invisible and even impossible – that is how I describe my life with RA and fibro. Living life with chronic illness also feels like a pretty demanding job. Every day brings with it new challenges and life doesn’t stop because I woke up with achy and stiff joints. Further, no two days are the same so you can’t even plan or prepare for the bad days.
Being sick has been my second job for the past five years. It is also the baggage that I carry around with me everywhere I go. It is a 24 hour, seven day a week, 365 days a year job.
But I find ways to cope and to better manage my life with a chronic illness. Every single day is a determined and strenuous effort on my part. Planning depends solely on the amount of energy I have and sometimes, even my best laid plans aren’t enough.
The truth is that I have good days, bad days, and downright ugly ones. There are days where my entire body is inflamed, I feel sick to my stomach and I just want to sleep. Sometimes, the sleep comes and sometimes, it doesn’t. Other days, the pain leaves me and I have what I call my good days. It takes a lot of effort on my part to have good days. I have to be careful what I eat, I cannot overdo things, and I have to keep moving. The pain is never completely gone but when it is at a minimal, I know that it will be back when I least expect it.
I am managing
If I am managing well, it is due to great effort on my part. Having good days is a hard work and so is dealing with the bad ones. I have learned that managing life with RA and fibro is like trying to steer a battered ship in uncharted waters. Every storm changes my direction and leaves me confused and lost and it takes a lot of effort to get back on course.
Life with RA and fibro is difficult but life is still good. I am coping despite the struggles that both diseases bring to my life. I have learned that even on my worst day, I am capable of greatness. After all, it takes a lot of a courage and determination to continue to steer a battered boat during a terrible storm. I am still going and as soon as the storm clears, I can assess my situation. It is too difficult to stop and assess things during a storm. All I can do is plan for the worst and pray for the best.
The writer’s block has come back and I am trying to prepare an article about how chronic illness changes our lives. The words will flow again. The article is not due until next Tuesday. I am a bit overwhelmed these past few weeks so I am sure that some of that is contributing to the writer’s block.
I feel like I am blocked in other ways as well – mostly emotionally and spiritually. I am in the process of closing a chapter in my life and well, it is long overdue, it is still difficult to do. The fact is life never works out the way we plan or we hope or we dream. We kind of just have to be happy with the cards we have been dealt and sometimes that means letting go.
One of the hardest things anyone has to do is let go. There are many things that we find that we have to let go of – people, situations, things, relationships and even characteristics about ourselves. Forming an attachment is easy but dealing with letting go is so very hard. It would be difficult for us to form attachments if we knew ahead of time we would have to let go. Just the thought of knowing that we would have to let go of someone or something we hold dear is painful enough.
Letting go becomes necessary when situations have reached an impasse and we find that we have to let go in order to fulfill happiness or own life paths. When the time comes, we have to move forward and pick up the pieces. If we refuse to let go and move forward, we won’t learn anything and we certainly will be miserable the long term, if we aren’t already. Leaving our old selves behind helps us to realize who we really are.
The truth life isn’t always wonderful or beautiful or great. Sometimes, life isn’t the way we want it to be or the way we expect it to be. I think when I lay my plans out God laughs at me and says with a chuckle, “Life won’t be the way you want it to go. Your plans won’t work out as you planned. But everything with work out the way it is supposed to. After all, I would never give you what you can’t handle.”
I am blocked but not just with the writing but also with my spiritual and emotional well-being. I am struggling to find a new normal because my old normal just didn’t work for me. What I have learned that even when good times seem long time and happiness is taking its sweet time, if I told on to the roller coaster long enough, I will find what I am looking for at the end of the wild ride.
I am learning daily to cherish change and to look at hardship as something that makes me strong and wiser. Tough times also help me to stay grounded and understand that not every day will be great but as long I keep move forward, I will keep progressing. And I have said it before, and I will say it again, I am a work in progress and I will keep moving forward.
There are things that we never want to let go of, people we never want to leave behind. But keep in mind that letting go isn’t the end of the world, it’s the beginning of a new life.– Author Unknown
I recently made a decision to own up to a mistake I made. At first, I thought that by being honest I would get forgiveness for this mistake. I didn’t have any different expectations but a part of me kind of found myself wondering what might have been had I not hurt this person. I hurt this person because I was not strong enough to fight for what I wanted. If anything, I thought I was protecting this person but now, I only realize I was protecting myself. Because of how badly I hurt this person, I realized an apology was warranted. Owning up to the wrong I had done and the hurt I caused meant freeing myself of the burden and guilt I carried all these years – so I thought.
I was wrong but I did the right thing
What I knew is that this person was someone who would appreciate honesty – at least the person I knew back then. I am not so sure now. I also think it is possible that person is still angry at me. A part of thought still wonders what might have been and another part of me has come to the conclusion that things were never meant to be. Owning up has allowed me to see the truth and now I can move forward from that.
I have done what I need to do by owning up to my mistake. Owning up has allowed me to forgive myself and as far as the other person, I thought time would heal but it hasn’t. I thought it would upset me that this person was still angry but I have come to the understanding that even though I owed an apology, that person’s anger isn’t justified. That person maybe angry at me for walking away but that person did not stop me from walking away. I away walked because I thought it was the right thing at the time and that person did nothing to try to change my reasoning.
At the end of the day
It has taken a lot of work and time but I realize now that I am enough. If people in my life want to walk away because I am imperfect, I will hold the door open for them. I have become someone that some people don’t like but it is just me being strong, saying what I want, and not allowing anyone to treat me like a doormat. If people are bothered by that, that is their problem.
At the end of the day, the only one I have to answer to is the Almighty God. I also have to be a person that my children are proud to call their mother. It has taken me many years and a lot of soul searching to feel confident enough to say, “I am good enough.” I have been strong enough to own up to my mistakes and if I have hurt others, I have apologized.
I have owned up to my mistakes to take responsibility for my own life. It is not about anyone else. It is about my trying to understand who I am, how I behave, how others behave towards me, and how my behavior affects others and my own life. I know that if I do not learn this, life will continue to be about what is happening to me, rather than what I actually have control of. And the truth is, I may not have control of what happens but I have control of how I react and behave.
Acceptance is one of the hardest things that we have to deal with at least one point in our lives. Since the beginning of this year, I have had to embrace a new normal. It has been a difficult undertaking for my children and me. Our lives were a certain way for so long and then they suddenly changed. Moreover, there had been so much havoc in our lives for the prior two years that change was inevitable. I had to make a choice to either deal with the same old heartache or to move forward and rebuild our lives. I chose to move forward.
I spent a lot of time trying to heal and I had almost forgotten that my children were healing too. After all, what had transpired had affected us all and we all dealt with it in different ways. They say that children are resilient when it comes to change and I want that to be true but as I watch my children evolve over the past few months, I am not always sure. I just know that we are getting closer to what “normal” is and what it will continue to be like. We are getting there but it is a work in progress. Our acceptance of our current life and what it can be is a work in progress.
For me, I recently came to an impasse in my battle with depression and the reasons for it. I finally accepted the fact that I was angry – at specific people, events, and circumstances. I always said I was not angry and I thought by not being angry, I was taking responsibility for my actions and my choices. It was not until I finally admitted that I was angry that I realized that I could truly heal. After I admitted my anger and why I was angry, I felt sad. Even though I felt my anger was justified, I hated that I could be an angry person. The more I thought about it, the more I realized that anger is normal emotion. I made choices based on what others expected of me and the lesson that I learned was that, I wouldn’t be happy if I continued down that path. I need to be smarter in the future so that anger or unhappiness doesn’t overcome me in a negative and destructive way.
I am learning to accept a lot of things but mostly, I am working on learning to accept that I am enough. I think that has been hardest part of my journey. I have spent a lot of time giving and giving because I felt that no matter what I did it was never enough. I felt guilty that I was sick and that my kids had a sick mother and I kind of felt that I wasn’t giving them enough. I also worried about my own health when it came to my mother – if I am sick, who will take care of her? I even worry about my relationship with the Almighty. Is what I give to God enough and does God think it is enough? I struggle with being enough as a professional and as a human being. A lot of that has to do with how I was raised but mostly, it has to do with the people I have let in my life, specifically the people who have hurt me. What have learned about hurt is that it isn’t about me, it is about them. We all have choices when it comes to hurt. We are either doing the hurting, we are taking hurt or we are strong enough to walk away from it. I have been made all of these choices at some point or another and I am learning from these experiences. I am looking at the lessons learned rather than the hate that they have left behind and I think I am wiser for knowing the difference.
I am a work a progress but I am getting there. The next time I open the door to a new chapter in my life…I want to be ready and strong enough to believe I am enough. And right now, it is just acceptance in progress but with each passing day, I am more confident that I can reach a point of contention with acceptance.
I have been through enough in my life to know that God will only give what He knows I can handle. I also know that everything happens for a reason but sometimes, I sure wish I knew the reason. In times where I find myself struggling with something that is out of my control, I start to struggle with my faith and my belief in the Almighty. I have never stopped believing in God but sometimes, I just don’t know that He knows I am here on my knees.
I have been through a whole lot in life and I know that I would not have gotten through these things without God by side. But, I just want a break from constantly being tested. I also wish that I some control of my fate. The things that get thrown at me, I wish they weren’t. For once, I just want something to work my way. I have spent a lot of years trying to convince myself that everything happens for a reason and now, I am not convinced. Sometimes, what happens doesn’t make any sense and maybe I want to know the reason that things happen as they do.
I know and I have been told that God has a plan for me and I don’t really have a say in that. However, I had everything in my life planned out. It was going to be a certain way but then it wasn’t. Then something happened and my plans were foiled. My life didn’t turn out in the way that I wanted it to and I sure didn’t get what I worked for. I tried to make it work and now I know it will never work.
I am okay that things turned out as they did because in the grand scheme of things, I was in the wrong place and with the wrong person. I knew I was with the wrong person but I did what was expected of me and I thought I could find a way to be happy. In the end, my best laid plans weren’t enough. I could have tried and tried until the end of time and the result would have always been the same. A part of me is relieved with the result and another part of me is confused.
I am at peace with what has happened of late and I know with certainty it is for the best. However, the reasons I ended up in this situation continue to haunt me. I understand I made my own choices but I made them to make others happy. In the end, I wasn’t happy and right now, I am trying to figure out how to be happy again. I keep telling myself that everything happens for a reason, that God has bigger and better plans for me, and that God will give me only what He knows I can handle. However, I am not sure that I always believe these three things.
I look back at what my life has been like for the past twenty years. I have been hurt by a lot of people and when I try to be happy and to do my own thing, there are too many people who disappointed in my choices. It has taken me a long to realize that if I continue to let others dictate my choices, I will never be happy. And now that I know that, I know that I have to make different choices – choices I have never made before. Because I have always done what I was supposed to do, I am afraid of what would happen if I don’t do what everyone expects of me. I don’t know the result and the unknown scares me. I want to do what makes me happy but what makes me happy may anger a lot of people. I am so tired of living a life where others dictate who I am and who I should me. I know I always have a choice but it is hard to make different choices when you know that the people closest to you will disapprove.
I know that my life will turn out in the way that God has planned out for me. I just want to know how do I get there quicker. I know what I want but it doesn’t always seem possible based on the obstacles I will have but it is not impossible. I consider myself a strong believer in God and even in my faith but right now, I just wish I could understand how everything is supposed to work out. If everything is supposed to happen for a reason, what is that reason? When will I know the reason? And why can’t have both the things I want – my faith and my happiness? It is hard to have it when others are dictating what these things are especially when they are picking and choosing what is allowed and what is not. No one is looking for the truth – it is about what they think is true. As for me, I am so sick of what everyone tells me is true even though I am smart enough to know the difference. Ignoring the real truth is what has cost me my happiness.
One of the things I have learning now that my emotions aren’t all over the place is that time does heal if we allow it to. Once we do, we become aware of how we were wronged, how we can forgive, and how we have also wronged. I think the realization that I, too, have wronged others is one that I have often pushed aside. I consider myself a good person and I have always been the kind of person that takes others feelings into consideration. I have been like that most of my life. I am not a mean person but there have times where I thought I was doing the right thing and looking back, I realize that I hurt others because I was only thinking of myself.
There was a particular person in my life that I hurt because I wanted to protect. At least, that is what I told myself. Now, looking back, I realize the only person I wanted to protect was myself. I think it is normal to make decisions that we think are best for everyone else only to realize that we were doing what was best for us. I did this more than once but there is one time in particular that stands out for me. It is a time in my life where my options were limited and rather than fighting for what I wanted, I choose to walk away. In hindsight, I escaped the situation rather than dealt with it. I thought I was protecting someone I loved but the only person I was protecting was me.
After a lot of soul searching, I have owned up to my mistake and made decision to reach out and apologize to the person I had hurt. The choice I made back than has haunted me for a long time and I am working to seek closure from that experience. I don’t know how owning up to my mistake / bad decision will affect others but I am doing what I should have done a long time ago. I ready to deal with the aftermath as well.
I used to think that time would eventually heal the deepest wounds. Now I know that wounds don’t heal if we don’t address them. We don’t take the time to tend to our wounds. We try to ignore them and we push them so deep that we convince ourselves that we have healed. I pushed so many wounds aside and told myself that I had healed but I have found that only when I reached within and pulled out my wounds how much I was still hurting. For the first time in a long time, I am healing. It is not easy but I am getting there. I am healing and I am grateful for this new journey. It is has made me a wiser, stronger, and more aware individual who really believes that time can heal even the deepest of wounds.
For those of us who are always sick, every day there are challenges and decisions. We have to decide what things need to get done and how to preserve our energy. We need to remember to take our medications and we also need to vigilant on what time we take them and whether we need to take with food or on an empty stomach. For example, certain medications make us sleepy so we would not take them in the morning before we need to drive to work. We would take them in the evening or if they only make us a bit drowsy, maybe we would take them once we get into the office after our first cup of coffee. Sometimes, a certain medication may make us nauseous so it helps to keep some crackers or dry toast on hand.
Being chronically ill means we have decisions to make daily. Sometimes, those decisions are small such as when and how to take our medications and sometimes they are big, such as whether we should head to the ER when we have high copay or whether we can wait to see our family doctor the following day. Daily, our quality of life is affected and the choices we make alter our lives for the better or worse.
It has been a long rough week but I am still moving forward. I have been dealing with pain, moments of sadness and depressed moods, and daily stresses of balancing my home life and work life. But I have turned my focus in a different direction so that this week doesn’t take its toll on me. I am focusing on what is right in my life right now. Doing that helps me to move forward no matter how crazy my body is acting and how stressful things are right now.
There is never enough time in my day simply because of the lack of energy. I come home tired from work and I start to think about feeding two very hungry boys. I don’t cook like I used it and sometimes, I miss that. It is hard to do when I come home exhausted in the evening. Then there are things to do such as cleaning up and then before I know it, bedtime is near and I am focusing on getting a four year old ready for bed and convincing a teen to get ready for bed. By the time my head hits the pillow; I don’t know where my day has gone. Even my weekends are busy, between keeping my home nice and tidy, running errands and helping my mom, my weekend is gone before I have even had a chance to enjoy it.
The only moments of solace I get in the evening and on the weekend are when I sit down and turn on the TV. I try to stay away from the news because of the emotional effect it has on me. I will try to watch an hour of TV in the evening and a couple hours on the weekend because it is the time where I actually get to sit down. It is also the only time where I can allow my mind to shut down and not think about the pressures that life throws at me. A simple moment but enough time to allow my mind to relax.
Between work, family, my health and thinking about bills and money, it is hard to keep the big picture in perspective. Sometimes, it is hard to know what that is or to even focus on that but it helps to notice and observe my feelings. It helps me to allow the unpleasant feelings to pass through if I make a choice to recognize them rather than to react to them. The more I practice allowing the negative stuff to pass, the more my ability to see the positive increases. Day by day, I am learning that there really isn’t a specific big picture. If I can focus on what is good in my life right now – my family, my career, my friends, and even the fact I am coping with my health challenges – the more confident I become to handling life’s challenges. My ultimate goal is feel a deeper sense of peace. I am not there yet but I am working my way towards that.
I have spent several days trying to pull together an article on the emotions that go with living with chronic illness. Much to my surprise, it is not an easy article to write. I find myself looking at my own journey with chronic illness and I believe that it has been nothing short of miraculous. How I have gotten through- I don’t even know. I have struggled and I have endured. I have been angry and I have been thankful. I have been happy and I have also been depressed. I have loved and I have been hurt by people who choose to turn their backs on me when I become sick.
Realizing that I was depressed due to many reasons beyond my control was hard for me to bear. I had been so strong through so much of the hardest times of my life since being diagnosed. Because I kept moving forward, I never thought I could be depressed. Looking back, I even surprised myself. Also, I realize that I made bad choices in the people I picked to share my life with. I should have known that when push came to shove, those people were not reliable. But I have learned and I will be wiser in the future.
Every day, every week and every month, my life changes. I am older, wiser, kinder and much more alert the world and the life around me. I still continue to struggle with my beliefs and I am struggling even more because of being depressed. Chronic illness makes me you numb at times but it also can set your emotions out of whack. When you are working on managing illness and depression through treatment, sometimes you shut down because sometimes, the emotions are not there. I have days where I am completely numb – whether it is the meds, or life or being sick – I long to feel something. Other days, my emotions are all over the place and I cannot quite explain it. How do you go from one spectrum to the other in a matter of hours or overnight? Living with RA and fibro is like that overall. You go from feeling perfectly fine one minute to being plagued with pain and fatigue within the hour.
I think the reason being depressed bothers me so much is because when I was searching for answers to why I was sick, I was pushed aside by doctors who could not figure out what was wrong with me. When medical tests found nothing, doctors suggested stress, anxiety and depression. It was enough to make me feel crazy. I think many of us have dealt with this so we struggle with our emotions. It is enough we are sick…but please don’t suggest it is all in our heads! For years, I struggled with my feelings and emotions because the idea that depression or stress or anxiety was causing me to feel sick sent me back to a time when no one believed the extent of how sick I was physically.
I want to somehow feel that I have won one part of this battle but I have won no part of it. I am still sick, I am still not in remission, and I am still struggling with all the things that life has thrown at me. I want to feel something other than what I am used to. For me, life has gotten to a point where nothing fazes me. I mean, come on – I have loved, I have lost. I have trusted and I have been burned. The one thing I thought I had control of – my body – I didn’t. Seriously? This is what life with chronic illness is like? Is that all we are destined for? – - – Oh, I don’t think so!
I refuse to let the world’s tragedies get me down. I refuse to let personal hardships get me. I refuse to let people who hurt me continue to hurt me. I refuse to lose my faith in the Almighty because sometimes, it feels like others have it easy and I don’t. More than anything, I want to set the best example I can for my children. Yes, I have two pretty serious chronic diseases and the years of trying to be strong have taken their toll on me, but in the end, I am anything but weak. I am stronger for all I have been through and I have handled it. I stronger for learning that not everyone is reliable. It is their choice to walk away and it is my choice to NOT let their hurt affect me. I am stronger for learning that heartache and tragedies are merely obstacles and that the human spirit can endure. The human spirit always endures because it keeps fighting.
The news have shown us some pretty horrific images this week and in the past, these events would have been harder for me to bear. However, lately, I don’t know what to expect anymore. All I know is that life is too short and we cannot dwell on the little things. We have to enjoy the present and love the people that matter. We need to tell him that we love them every day and pray for their safety. That is all any of us can do.