Advice to My Past Self on Living With Chronic Illness

Dear current self,

I know these past four and a half years have been physically demanding due to chronic sickness, numerous tests, medication trial and errors, hospital stays and a variety of procedures and surgeries. You have been pulled through the ringer. You’ve experienced unimaginable pain, fatigue and nausea while also trying to determine how to fuel your body with much needed nutrition and hydration.

These memories do not go away. They will continue to reappear as time passes by and your symptomatic illness continues. Just remember that there have been some improvements along the way. These obstacles have brought a lot of confusion, concern and hurt, but have also made you realize the strength inside yourself that you may have never known existed. (I know, sometimes you feel the exact opposite, especially when the severity of symptoms increase to heightened levels or remain constant for long periods of time.)

Those days and nights of screaming and squirming around in intense indescribable pain due to colonic inertia are gone. You are no longer required to take every possible laxative on a daily basis, adding to your discomfort, just to try and find a little speckle of relief. That was taken care of by you and your magnificent GI doctor, because he took the time to actually listen and care about you. How awesome is that! With his help, you’ve also improved hydration with home infusions and have been able to decrease the number of hospitalizations.

The purpose of this letter is not to remind you of what is going wrong, just as it’s not to imply that things should have been or should be handled differently. You and your medical team are doing the best you can and what is perceived to be in your best interest during each specific moment in time. For the most part, you have been fortunate to have received some effective and compassionate medical care from doctors and nurses. (Yes, I am also aware that has not always been the case.)

 

Unfortunately, you will always run the risks of having medical providers who do not listen, do not believe you, are unwilling to communicate, don’t appear to care about you as a person and/or do not value your quality of life standards. These unfortunate situations do occur, but keep in mind the phenomenal medical relationships you have had with your favorite all-time doctors and nurses and how much of a positive difference having them on your medical team has been for you along this long and difficult health journey. In the future, if you find yourself not feeling valued as a patient or have issues placing your trust in them, stand up for yourself and search for a physician that better meets your needs. You deserve that!

I see you trying – trying to stay realistically optimistic even when dealing with shattered plans, piercing physical pain, and relentless nausea (usually hours after oral attempts). I’ve seen you withstand the emotional strains you have been through as a result of your chronic digestive and nutritional issues. I’ve heard you reach out for help in prayer or songs when part of you wanted to completely let go and leave all of the physical and emotional pain away forever. When you wanted nothing more than to quit on life because the sickness, symptoms and their impact on your life felt too overwhelming to comprehend and face. I’ve witnessed you feeling miserable, unsteady, confused and sad due to the effects of your continuous illness. You’ve tried hiding your health and emotions from others, including yourself, in an attempt to avoid dealing with sickness.

The reality is you cannot make the illness go away; avoiding it gets you nowhere. Death, whether from this or something else, is inevitable. You’ve felt the sadness of watching so many young people, some actual friends, die as a result of complications from gastroparesis. (23 already in the past five months from just one of your support groups. Most of which were unexpected.) So many more are struggling with their health, having a difficult time finding appropriate medical and/or familial support, even on hospice or palliative care. With that in mind, you understand the importance of convincing yourself that amongst all of the negativity of your chronic ailments, you also have many positives to strive ahead with and for. That’s the purpose of this letter, to encourage you to take the best care of yourself – in all aspects of your life.

You can begin by being kind to yourself. Stop criticizing and making unfair judgements against yourself. Your illness was not created by any fault of your own. You have done well at trying to understand and help your body heal, or at least function better. Unforeseen changes have occurred to your body, some of which at times impact your self-image. These changes have been essential in keeping you out of the hospital. They have assisted in improving your quality of life, even though you still have a ways to go.

Yes, there will be times when you hate how your body feels and functions as well as its appearance. But it’s the only body you have. God has provided you with this vessel. You may look and even feel like an alien or machine at times – but look at all the good things that come along with your adaptations. You want others to accept your differences? You must own them, accept them and take pride in them yourself. Not sometimes, but all the time. Trust that you know when something is not right, trust that you know what your body and mind needs better than anyone else, and trust that you will reach out for help when you need it.

You may hear or see that some people accuse you and others of sharing your health stories for sympathy. If this is ever the case, don’t pay it any mind as apparently they do not know you or your heart. You know with all of your being that you don’t want to be the center of attention. You could care less if anyone outside your small circle of family and friends knows your name or individual story. Sharing your story with others comes at a risk. It’s outside your comfort zone, but that’s OK. Just stay focused on why you do it – to help others who are facing similar struggles and increase awareness so better treatments and more research can become available, if not for you, for the younger generations.

Follow your heart; that’s all that really matters. If you listen to your heart, I believe God will guide you in the right direction. Self-worth and purpose are essential to maintain when dealing with illness day in and day out. Some days you are going to withdraw yourself, hide behind a “mask,” want to be invisible or appear “normal” – and all of that is OK. It’s perfectly fine to take it day by day or moment by moment. You have permission to authentically share your journey one day and the next be completely silent if that’s what your mind and/or body needs. You are not expected to be strong, courageous and happy all day every single day. You are allowed to experience any and all emotions. The key is to maintain a healthy way of coping with a variety of emotions and all of their levels of severity. You have already discovered how beneficial writing and blogging is for you. Keep in mind that new ways of coping may appear along your journey as well.

My advice to you is to live the rest of your life to the best degree possible. Not every day is going to be a decent day. There are going to be bad days when you struggle. There are going to be days, possibly more than you anticipate or want, that are dark, scary, sick and painful. There are going to be days when you hate yourself or feel as if you are alone and drowning. There are likely going to be even more days that you are weak, frustrated, defeated and extremely fatigued. I’m sure there will be days you are hopeless and fighting with all of your might just to survive the present moment. Most likely there will be days when you feel like giving up, when you are unable to see anything but dreary days ahead again.

You’ve been there before, and guess what – you are still here! You have persevered or managed to endure all of the challenges and obstacles that have come before you. Whether it was just taking one breath at a time, screaming/crying through tremendous pain, withstanding incomprehensible nausea or educating others, you always find a way to keep moving forward.

Sometimes it was by singing along with your favorite song lyrics, taking long hot soaks in the tub, listening to encouraging words from loved ones and friends,or simply laughing at the craziness of it all. Why? Because you realize that not every day will be horrible. There will be days that may not be perfect, but manageable enough to push through and actually live. There will be good days and even magnificent days ahead as long as you keep holding on.

At times your days may feel as if they are constantly full of thunderstorm after thunderstorm. Yet, every storm will eventually calm at least for a little while. The rains will let up, skies will brighten, rainbows of blessings will even be visible between some storms. These brighter days are the moments you must take advantage of, must live for and must remember. The calmer days, even if they are damper than you’d prefer or drizzling with pain, nausea or other symptoms need to be lived. These moments, when lived, will become extremely important to your mind and heart.

You have to keep living – not just existing, but actually living! You need to continue to take reasonable risks – just not too risky – of having fun and creating memories with your kids and family. There is a reason you are here, and I can guarantee that the reason is not to just sit back and let life pass you by while waiting to feel better. Fight to enjoy the “better” days, even if it takes days of preparation or recovery. At the same time, be mindful of what your body is telling you. (I know – it’s a very thin and shady line – and unfortunately, you will not always make the right decisions. Oh well, that’s life, right?)

Will you have to make sacrifices? Of course! But you don’t have to always sacrifice you!

Will you have consequences to pay? Yes! Only you can determine what’s worthwhile at the time.

Will there be limitations? Absolutely. Energy, health and strength will all play a part every day.

Will your actions complicate or make symptoms worse? Likely at times, but what if not always?

Just remember these few key points…

You and your life are not defined by your illness or emotions. I know they play an undeniable part in your day. Lots of times your emotions become more complex to handle because they are the result of physically feeling horribly sick. I know they help make you who you are. But not them alone! Your dreams, intentions, heart, goals, outlook on life and faith make you who you are as well. Reflect on your emotions and desires.

Whether by writing, blogging, mindfulness or talking with others – be open to communicating how you feel and why you feel that way. Respect your emotions – all of them: positive, negative, happy, sad, fright, guilt and all of the in-betweens. All of them matter because all of them make you who you are. Don’t ignore them. Don’t push them to the side. Embrace them and let them help you grow. Allow them to help you be the best you possible, allow them to strengthen your relationships, including within yourself, and allow them to keep you humble and genuine.

Breathe. It’s OK if that’s all you can manage at the moment, hour, day or week.

When you catch yourself in a negative frame of mind, use that as a clue to rethink and redirect your thinking. Label the emotion and then ask yourself what you can do to make it less painful or more manageable. You are quick to encourage others; it’s OK to encourage yourself as well. Surround yourself with people who are there for you, people willing to provide you the encouragement you need when you are at your lowest. It doesn’t matter if they encourage you in person, online or over the phone – as long as you have people who care about you and whom you feel comfortable enough to turn to when times are most challenging, people who can bring you out of the darkness by reminding you of your strength, faith and value.

Have a purpose for each day, whether it’s in the form of self-care, fun or simply helping others. Find a way to keep the purpose fresh in your mind to look back on when you question why you are trying so hard, why you are still existing and why you matter. I suggest you take a moment each day to jot down your key purpose for that day. (Possibly on a calendar, so it’s visible.)

Sometimes your sole purpose for the day may be resting, recouping or attending necessary medical appointments. Other days it may be observing your child’s ballgame or being present at a school function. Another may be comforting a loved one that’s going through a difficult time themselves, helping with homework or running errands. But the point is, you can and will do something meaningful each and every day!

You’re not worthless, regardless if you feel so during the seemingly endless bad days, weeks or months. You have and can continue to make a difference in the lives of others – you just have to protect and take care of yourself along the way. You must be careful to pace yourself and not try to overextend yourself. The quality of relationships and experiences are far more important than the quantity. Choose which activities are the most worthwhile to you and your family. The purpose of your day does not have to last all day long – it can be short in duration, possibly lasting only an hour, yet still be meaningful or even essential.

Search and strive for true happiness – not just satisfaction. Take the time and initiative to enjoy life and create treasured memories with family whenever the opportunity and mood becomes you. Sometimes you have to be willing to tackle the consequences later to discover the joy, happiness and experience in the moment.

Continue to express faith with appreciation and express authentic gratitude for all that goes right. Trust that everything has a purpose and a positive side. Find peace with your decisions, choices and yes, even mistakes! Accept that your illness impacts your life in more ways than you’d ever like to admit and without a doubt more than you ever want it to, but there are still ways to enjoy life and make it meaningful and purposeful .

You can handle this. You will do this. You will push the limits, you will fall, but you will also get back up.

When it comes down to it, we can’t change yesterday and are not promised tomorrow. All we have is today, so make each day count. Your parents, kids and even yourself are not going to get any younger. Time is not going to stop while you try to feel better. You are going to have to “bite the bullet” and fight to remain alive not only physically, but emotionally and mentally as well. You’re going to have to communicate and work alongside your medical team, including new ones, in determining and creating your healthcare treatment plans.

If you successfully remain determined and stay on the correct track, then you will be rewarded. Every time you witness the joy in your children’s voices and eyes, attend graduations and weddings with tears of pride, observe the miracle and feel the little fingers of your future grandchildren, are reminded of loving memories shared with loved ones across the years and feel the magnitude of love from God, your family and even friends and students you’ve had the opportunity to come to know along the way, you will realize exactly why…

You never give up and you always keep fighting!

Thank you for having faith in me!

Sincerely,

Your future perspective

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Thinkstock photo via bruniewska.