Ask April- Chronically Cared For

Welcome to Ask April, a no-nonsense advice column focusing on what it is you can do to correct things that need correcting.  While we all know much in life is out of our control, and sometimes, our reaction is all we CAN control, we really do have a lot of personal power, thankfully. Our will is just as important as the wills of others around us, and while we need to be considerate, we also need to make sure others are equally considerate of us. It is my hope that when you write in to me, asking advice that I can help you make a good decision that somehow improves whatever situation you’ve found yourself in. As with anything I share, I recommend people don’t automatically take my word for anything, but include my advice in with the rest of the things that help them make a decision. I wish you well. Read on.

Dear April,

I suffer from a chronic illness and there is no end in sight to this. I’m not terminally ill, but I will have this until the day I die. I look fine, but sometimes have very bad days when I cannot function at all. I have quit working, and don’t drive any more. I have all the help I need, and have been to doctors, so it’s not like I need a solution. This is just how I am now.  I have a lot to be thankful for, so I am,  and I feel guilty even feeling down when I realize there are actually a lot of people worse off than I am. It’s just that some days, I remember what my life used to be like before all of this, and I just wish I could be the person who I used to be. I can’t emotionally cope some days. I also can’t deal with the fact that I will always have a bad day come on with no warning. This keeps me from doing things I used to enjoy, and it’s debilitating. I also feel useless a lot of the time, and am sick of having to have other people do so much for me. I know I can’t change how my body is, and I can’t help how I feel about it. Any words of wisdom you can share will be much appreciated.

Thank you,

Chronically Cared For

 

Dear Chronically Cared For,

I am so sorry you are going through this.

People who have never dealt with what you do have no idea the sadness, fear, and loss a person who suffers from an illness that will never go away deal with. This is on top of the physical suffering, and watching life go on without you that chronic illness sufferers deal with every day.

You have enough to deal with and don’t need to deal with the burden of guilt also. You did not choose this, and I daresay, you’d choose to change it if you could. You have done nothing wrong. So please, no more guilt.

Next, the fact this is keeping you from enjoying things that used to make life full, and a joy is unspeakably horrible. My hope is that the people who are your friends, and family spend plenty of time with you, and do other things with you that you CAN do. I wish things would change back to how they were before this hit you, but even if they don’t, make sure your loved ones know what is possible for you, and be the one to ask them to join you for those things.

With chronic illness, there has to be an understanding from friends and family that a bad day could come at any time, and this has to be accommodated.  Even if plans have to be cancelled, or if you need to leave early, this has to be understood.

Remember to be gentle with yourself on both good days, and bad days. Overdoing a good day can trigger a very bad day. Please don’t overdo it.

While we tend to base our personal identities and self esteem on how much we accomplish in this life, a sufferer of illness has to use different standards to judge that than somebody who has no illness at all.

A major accomplishment might be just getting dressed, even if you are not going anyplace. It might be functioning well enough to do dishes, or even just stay awake for a phone conversation with a loved one. It might be going ONE day without feeling guilty. It might be going for a walk around the block. I am not sure what your personal illness is and what all it keeps you from doing. What you need to do is focus as much as possible on what you CAN do, and feel proud of accomplishing that.

Missing what you used to do is completely understandable, and it is also unavoidable. You will never give up the good memories from things you used to do. I just want you to understand you are still the same person, and you are just as wonderful although your abilities have changed. That will be very difficult to believe some days. I need you to try to believe that, though.

I’m not going to tell you that your suffering will make you strong or build character, because I don’t believe that.  I also can’t promise you things will get better.

What I can promise is that you can still contribute something or another. Most of the time, the most useful thing we can do is to be kind to others. There are so very many hurtful people in the world. We need, more than anything else, as many people as possible who will bring love and light into the world. Even if you can’t get out and be nice to strangers, be nice to the people who help you.

Please know you are loved, and regardless of how much you can’t do, you are still important to the people who love you.  Please forgive your body for what it has done to you, and enjoy what things you still have in life to enjoy. Hugs.

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