Accepting Help

I'm an independent kind of girl.  I've always been resourceful, creative and determined and it seems as though many of the ESRD patients I meet are a lot like me.  We often do not like asking for help.  Somehow, we think, we will manage this on our own just like we've managed everything else in our lives up to this point.  Most of us are really shaken when we find ourselves needing and even wanting help.  Here are my top 10 kinds of help that I encourage all ESRD patients to seek and accept:

1. Accept the help of friends and family.  Whether they offer to clean for you, cook for you or just spend time with you, you need these people in your life.  They give you purpose and they remind you of your worth. Surround yourself with people who love unconditionally, depend on them to give you strength in your weaker moments, and allow them the chance to really connect with you.

2. Accept the spiritual support of your church and of anyone else who offers prayer or encouragement.  I'm not a church goer, but I do have a strong network of friends and family who are strong in their faith and offer me spiritual guidance. I am a Christian, but whatever faith you practice, try your best to hang onto it.  It's a slippery slope of disappointment an disillusionment when you're dealing with life-threatening illness.  It will test your faith like nothing else, but if you have sources of spiritual strength in your life, let them have access to your heart and mind.  Pray for yourself (it's okay to do that) and practice letting go of  your need to control your situation.  If there's anything I've learned about this disease, it's that often, it has tremendous power over you. Let your higher power have your disease.  Accept the strength and peace that comes from your faith.

3. Seek out practical solutions to your problems. If you can't work or don't have enough income, check into public assistance programs like SNAP, SSI or SSDI.  Some programs offer temporary help while you are getting back to work, some will provide assistance with food, and Social Security Disability will pay you a monthly amount based on your work history and income.  People who have children under 18 may also qualify to receive support for their children through SSDI. The National Kidney Foundation and American Kidney Fund help pay Medicare premiums and COBRA premiums so you can keep your insurance policies.

4. Connect with your Social Worker!  Every dialysis center is equipped with a social worker who plays several roles in helping you navigate your way through managing ESRD.  Social workers can help connect you to helpful resources and are there to serve as a sounding board for you during times when you really need to let off steam or cry or just talk about what is going on in your life. Social workers, unlike psychologists or psychiatrists, will help you focus on your strengths, even when you feel like you have none.  Your social worker can help you in so many ways, but you have to be open, honest and willing to let him or her in on the intricacies of your world.  Use your social worker as a valuable resource for support.

5. Ask for help with specific things.  We all have friends who want to help, but don't know what they can do.  They say, "Let me know if you need anything," but we often don't hear them.  It is perfectly acceptable to ask someone to help you organize your closet, watch your kid for a while, or ride with you to an appointment.  If people make vague offers to help, step in and give them ideas of things they could do that would be beneficial to you and lighten your load. What is it that weighs you down the most?  What do you wish you had help with?  No one can read your mind. Speak up, and when someone offers a specific way of helping, accept their offer.

6. Accept help from other people who have ESRD.  You might not know anyone else with ESRD, but there are online support forums just for people like us, where you can connect with other ESRD patients who understand your battle and may be able to offer practical help and support.  Reach out to other people who can meet you where you are.

7. Help yourself.  Make your life easier by not being so hard on yourself. Prepare easier meals, get help with shopping so you can shop less often.  Give yourself time to rest.  Accept invitations to parties and get-togethers.  Go out to dinner with a friend, spend time engaging in a hobby or favorite activity.  It may seem like  a no-brainer, but shower and get dressed every day, whether or not you're going somewhere.  Take pride in who you are and in your appearance and your outlook and attitude will be much more positive and uplifting.

8. Let it go.  If you've had a long day and you're just too tired to deal with that load of laundry or that sink full of dishes, give yourself permission to let it go until tomorrow.  Many of us pressure ourselves to function at the same physical levels as other people in our age range or social class, but the reality is, we tire quicker and much more profoundly than other people.  That sink full of dishes isn't going to harm anyone if it waits until morning.  That load of laundry will still be waiting for you when you wake up the next day.  Don't be so hard on yourself that YOU make your life more difficult.

9. Be completely honest with your doctor.  Your Nephrologist is there to help you, but he/she can only do so much if you aren't forthcoming about your issues.  If you are struggling with pain, constipation, nausea, itching, weight gain/loss, skin problems, sleep problems or any of the other physical ailments that come with ESRD and dialysis, let your doctor know.  Talk to your doctor about any physical concerns you have, whether or not you believe they are related to ESRD. There are often dietary supplements or medications that can help manage your symptoms and make you more comfortable. As well as being honest about your physical condition, be sure to talk to your doctor about your mental and emotional state. Most people with ESRD suffer from depression at least some of the time.  If you communicate openly with your doctor, he/she can help you find medication or other interventions to help with your depression and/or anxiety.  You don't have to live with discomfort just because you have ESRD. Let your doctor help.

10. Be helpful to others. I know it sounds crazy.  You might be at an all time low physically and mentally.  Your emotions may be all over the place. You are overwhelmed with all that is going on in your world, so how could you possibly help anyone else?  It is often those of us who face the toughest challenges who end up being a strong source of strength and support for our loved ones.  People in your life will look to you to learn how to cope with your disease.  Be an example for them.  Volunteer your time to work with the homeless, or the elderly or children.  Find a way to donate your crafts or raise money for a local non-profit. Think outside of yourself and your own struggle and focus instead on helping someone else carry their burden for a while.  We all need to be mindful of our own physical and emotional state, but too much of an inward focus can leave us feeling hopeless, useless and incapable of contributing to the world around us.  When you give of yourself to a cause or another person, you are fulfilling your purpose and a human being and you will feel so much better about yourself and your future.  Help yourself by reaching out to help others.