Friday, July 15, 2011

Being Chronically Ill and Asking for Help

Seven Star Farms organic plain vanilla yogurt with fresh dark sweet cherries in a bowl is what I had for breakfast.  I haven't had such a fulfilling breakfast in months and months. The freshness of the cherries and the goodness of the yogurt felt so delightful to my body. There is something about eating such simple delicious food.

In May 2010, I started seeing a nutritionist and started this program called LEAP. My blood was tested individually for the 150 most common foods in the American diet to see if I was sensitive to them. I went on an extreme elimination diet and now only eat foods that my body was not sensitive to. Apparently, the foods I am sensitive to were triggering Migraines! Currently, I do not eat gluten, processed sugar, processed food period, soy, or corn among other random food items. I do not eat fast food and can only eat at a handful of restaurants which means all my food has to be homemade. When I started this food plan in 2010, I was much healthier and felt well enough to cook for every meal. Once 2011 rolled around and I was not feeling well, I resorted to George's cooking. If you know George, before he met me he had never used his oven, stove or microwave. So cooking *my* food was a challenge for him. And when things continued to get worse for me health-wise, George had so much on his plate he was unable to cook for me anymore.

We found two restaurants that have gluten free/allergen practices, which means they use separate cutting boards, utensils, parts of the kitchen to prepare food for people with allergies. So, for months we've been alternating between restaurants for our meals. And our fridge has been empty.  Why? We were on survival mode. When one is on survival mode, one has a very narrow viewfinder.

A friend who lives a block and a half away from us has been asking to help for a while. Recently she emailed me and offered to grocery shop among other things. I spoke with George and we realized that we really need help. It is a difficult place to be. George and I met volunteering at a food pantry. I never really realized how difficult it was for the clients I worked with to come in for food. I knew from talking to them it was hard, but I never really understood.

When I was growing up and when I was working, I loved to be the giver. I was in the helping profession, I volunteered and it filled me up. Ever since October 2005, it has been hard not to be able to give in the way I want to give but it has more so been a humbling experience to need others' help. George sometimes holds me up on the toilet or helps dress me when I am too weak or dizzy to do so myself. He also drives me everywhere as I am unable to drive. These are a few common examples of how I depend on him in our daily life. My life requires that I look to others for help...usually George or lately his parents. It is exhausting feeling like a "needy" person. Chronic illness means you require more than the regular person does and that is difficult to accept.
Part of having so many needs that one cannot fulfill themselves makes one feel like s/he is lacking something or that something is wrong with him/her. I know this is not the case, but not being able to take care of one's own basic needs would affect anyone's self esteem. Sometimes being chronically ill makes me feel chronically needy and I hate that. I'm not sure if it is hard for me to accept help or if I'm just so tired of having to be helped or a combination of the two that has kept me from really reaching out. As humans, we were made to be in community with each other with a healthy balance of give and take. I see it every day in my chronic illness community. Even though we all often are depleted, we make an effort to reach out to each other as much as we can...especially when someone needs us for support, encouragement or just to be listened to. And they are there for us when we need support. It is a beautiful interaction.

So, why is my fridge full of fresh fruit, yummy veggies and meat ready to cook today?! All because my dear friend was persistent in asking me to let her help us and because I said yes. A lot of people say "Call me if you need anything" which is extremely thoughtful and kind,  but as the person that needs help, I wonder, what exactly are they willing to do? Walk my dogs or clean my toilet? When someone is specific and persistent about how they can help and what they are willing to do to help, it really helps the person who needs the help to accept the help. It also helps if the person who needs the help, (me), let other people help her. I wish I could express to my friend how much it means that she would take care of me and George in a way we are not able to take care of ourselves right now. It is a beautiful thing. Truly, one of the bests gifts I could ever receive


  1. Kelly, your words resonate so much with me (as usual)! It's SOOO difficult to accept needing help, and then to actually make the step of accepting the help others offer.

    I'm so proud of you for allowing a friend to help you and George, and I'm so happy that you have a friend nearby that is willing to do that for you guys.

    I definitely agree that people offering help should be more specific and persistent. I don't want it to seem like I think poorly of people, but sometimes it's hard to tell whether they are just offering to be polite, or if it's a sincere gesture that they would actually be willing to fulfill.

    By the way, I completely agree about our online community. It's so beautiful and uplifting to be able to both give and receive from people, especially knowing what it's like to live with chronic pain. It's a safe place to open up and be vulnerable, and that is healing to the soul.

    Blessings, dear friend.

  2. This is a very touching post.
    I too have such a hard time accepting help. My husband and I actually went into therapy to help me deal with this issue. It has helped, but then I got better for a while, now I'm not so good again, and I'm not dealing with things as I'd like.

    My online community has been the best support I've had.
    I haven't had any friends who have really reached out to help.
    And I have food issues too, it's hard for people I think to understand, and they shy away from bringing us food, as they might someone else who is ill.

    I think it has also become such a way of life for me, that people just don't think about helping. I have reached out a few times, and was not met with the help I expected from some people. That was hard. I have found that many people are just offering to be polite.

    I'm so happy you have a friend who stuck to it, and made sure you had some help. I know it means the world to you.

    I too have always been a caregiver. I like to help. It fulfills me, now I can't and it aches.

    I'm so glad to see you posting again. I think of you often, and have missed you.

    drop me a line sometime, if you feel up to it, and let me know how your surgery went. I've been in contact with someone recently who went through it, and she has had a horrible time. I hope things weren't as bad for you!

    thinking of you and sending you my best.

  3. Thanks, Jamie! Accepting help is so hard! I agree with what you are saying that it is really hard to tell if people are just being polite or actually mean it. Kind of like when people ask "how are you?" do they mean it in a passing fashion or do they really want to know how we are doing?
    Blessings and hugs!

  4. Thanks, Wendy!
    I agree with you that the online community has been my most consistent support for me as well. I often feel like if someone is helping me then I become their "charity" friend.
    As far as the food issue, after my surgery, for two weeks, we set up a carecalendar for people who wanted to to make food for me. I was very clear about what I could and could not have and I got some pretty amazing dishes.

    I will have to send you an email soon. My surgery was extremely difficult and I had the most horrid recovery. I must say it was one of the worst things I have been through in my life. I've been meaning to post about it, but haven't found the time yet. I also started to develop seizures in June and an EEG I just had showed seizure activity, so its been a bit wild here. Look forward to catching up with you Wendy!