Tips for Functioning While Chronically Ill? :(

Updated on November 09, 2011
L.W. asks from Shawnee, KS
12 answers

I've been sick for 6 months. Losing weight - like 25 pounds, can't keep food down, so incredibly exhausted because I just don't have the nourishment my body needs. I'm seeing doctors and so far they can't find a solution. Meanwhile, I just want to take care of my sweet family who is struggling with all that I can't keep up with/do that I normally would. I hate that they (my older daughters especially) have to take on extra responsibility while I literally have been passing out if I get up to do too much :(

Anyone dealt with anything similar? How do you cope? How do you let your family know how incredible they are? How do you deal with the guilt? :(

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So What Happened?

Thank you so much to all of you. I will try to keep positive and I am making the most of my need to sit around a lot...I pull in someone to snuggle. It has lead to nice conversations we might not normally have had. I wish, wish, wish I could get someone to come and cook/clean once a week, but that's not in the books right now. We are staying on top of the main things - it is just hard to let things go. I really appreciate all of the words from those of you who have been there, and everyone's words of kindness are helpful.

More Answers

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D.B.

answers from Charlotte on

L., I'm so sorry. That happened to me 2 1/2 years ago. I lost so much weight in 6 months that I was afraid I had hurt myself. I had facial pain that made me feel that they were missing a brain tumor diagnosis. I ended up having sinus surgery, and things are better now, though not back to normal. I doubt I will see normal again, to be honest. But I don't throw up every day.

Do you have a rheumatologist? People actually come from different states to see mine - his name is Dr. Carpenter with DuPage Medical in Illinois. It takes several months to get an appointment, but it's worth it. A rheumatologist is kind of like a doctor's "Dr. House". (Without the bad bedside manner.)

I know that your circumstance is different than mine, and I am much better now. I have started exercising, doing a gentle yoga class, and walking on my treadmill. I am well enough to go visit my friends overseas twice a year too, though I am careful and pace myself. I just don't over-commit anymore and keep my stress down. It's a little easier for me because I have teens, and only one at home now.

My internist told me something that made a lot of sense to me. He said that when the body is stressed, or in a lot of chronic pain (which was the case for me), that it reacts in different ways. You sound like me - with not being able to eat, and throwing up and all.

There is a supplement in the drug store for diabetics to drink that keeps the blood sugar steady. It is sold in a little six-pack. I forget the name of it, but you could find it pretty easily. It was talked about in one of the diabetic periodicals, and it has a lot of nutrients in it. Why don't you try that and see if it helps? You don't have to have diabetes to use it. Getting ahold of your nourishment is the first thing, in order to get other things handled.

I hope you can do this. It's the FIRST step in coping with the guilt. I promise you.

Dawn

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❤.M.

answers from Los Angeles on

I am so sorry you are sick.
I hope you continue to go to the doctor until they can find what ails you.
In the meantime, it's okay to ask for help.
Is there a close family member that you might be able to ask them to help
you by making a meal or two to freeze?
It's okay to have your kids & hubby help for now. They love you & I am sure they want to help.
Let them. That is what family is there for. You are a unit.
You helped, loved, cherished them throughout all of their growing years.
Let a lot of the major cleaing go by the wayside for now.
Only do what must be done: clean bathrooms, wipe down kitchen counters. Dusting, sweeping & vacuuming can be done by your family.
Laundry.
Be sure to follow up w/your doctors.
You have to be pro-active in your follow up w/them.
Maybe search the web for similar symptoms.
As far as keeping food down, can you eat soup? Drink shakes that are
pre-mixed & have protein? Drink water to stay hydrated?
I will keep you in my prayers honey!

3 moms found this helpful

A.R.

answers from Houston on

My own mother is chronically ill and her method for coping is simple, remain cheerful and upbeat. She's let us all know her limitations and we've adjusted to helping her and working with her limitations. I would say don't feel guilty. You are not choosing to be sick so why feel guilty when you can't do things? That's a waste of your precious resources. Instead continue being honest about the help you need. My mother continually thanks us for our help and extra efforts which is enough for all of us. Good luck.

P.S. Don't sign on for things you absolutely can't do. My mother tried to stay with us when our baby was born. It was an utter disaster. Within 3 days she was worn out and I was having to do everything plus help her. It was not pretty since I was recovering from a c-section.

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S.Y.

answers from Chicago on

This can be hard to do...but let others know that you are struggling and what your needs are. Tell your extended family...If you belong to a church let them know. Let the moms of your kids friends and neighbors know. Bascially enlist the community in helping out you and your family. It is hard to do...but people love to help out. I know that when I have a sick friend I love to make dinner for her family, baby sit, etc. It is a way that I can show that I care and also help her out. Don't be shy about asking for help. Make a list of what would help you out so that you have them handy when someone asks what can I do to help you out.

On the medical side, keep advocating for yourself with the doctors to figure out what is wrong. Enlist family or husband or a friend to go with you on doctors visits and advocate for you.

My husband is chronically ill, so I have an idea of the road that your family is on. My prayers are with you and your family!

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☆.A.

answers from Pittsburgh on

I'm sorry you are so sick and I do hope your docs can get to the bottom of this.
I just wanted to suggest, if you can afford it, getting some help around the house. A housekeeper once per week, maybe someone to cook, do laundry, etc. if you can swing it until you're back to normal.
And when people say "let me know if you need anything" -- let them KNOW!
All the best!

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K.P.

answers from New York on

When people offer to help, say "thank you" and then give them something to do. It's so difficult for us, but when you need help, ask for it!

The ONLY thing you need to do right now is focus on getting better. Your children and husband will learn so much from this experience... compassion, responsibility, respect and valuing peoples' contributions to the household. Thank them when they help you, but more importantly thank them during the quiet moments. You can't cook dinner, but you can surprise them with pizza and a movie on a random Tuesday night!

When you are feeling better, throw a "thank you party" for those who helped your family during this time. They will appreciate being thanked, but will also enjoy spending time with you when you're back on your feet!

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L._.

answers from San Diego on

I've dealt with that in short spurts when I had unexplained dizzy spells that made me throw up. I can not function like that. But most of my problems have been centered around pain.

Please, while you are sitting or laying down, go to kcm dot org. Go to the Media section. There is a search function. Type in healing. There are years of great archived teachings about healing.

I've been healed of 80-90% of all my pains and it's probably more. Things keep trying to come back. But I stand on the word and watch the shows and it goes away again.

Last week and the week before, we had a virus go through. Everyone in sight was throwing up. Some of them threw up many times over several days. I kept waking up feeling the world spin. I just kept saying, "Oh no you don't Satan. I am not suppose to be sick." Then I would sit up and watch the healing shows. I did this 2 nights in a row and a little bit the 3rd morning. Each day I functioned normally, even though I was tired.

You do NOT have to live like this.

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A.C.

answers from Madison on

Sounds like me. Been going on four years now of trying to get my body fixed. I see a naturopathic doctor; actually, I see him again tomorrow, as my lab tests came back and there are some issues we need to address. My allopathic doctor kicked me out of the clinic when I got sick and started asking questions; the alternative healthcare community is where I've been finding answers and help. Some of my problems: severe heavy metal toxicity; severe malabsorption; severe deficiencies in key vitamins, minerals, amino acids, enzymes, etc.; Leaky Gut; casein allergy; severe gluten and soy intolerances; other food intolerances; hidden virus; moderate adrenal fatigue; system wide yeast/Candiasis; genetic liver mutation uncovered, wherein my body cannot detox or metabolize correctly. With my latest round of lab tests, my thyroid is low; that might explain my fatigue (I'm currently taking something for the adrenals; they SHOULD be healing. :P). But that doesn't explain why my white blood count is low and has been for about four years now.

It's been h*** o* my husband and on my daughter, who is now eleven. I feel incredibly guilty. I can't do much, because doing much of anything--to include cleaning the house--leaves me so tired and zapped that all I want to do is go to sleep. I feel guilty because nothing gets done, my house is a mess, and I feel awful for having to spend money out of pocket to get me the help I need in the alternative community (doctor visits, supplements, nutriceuticals, etc.).

We have no family close by to help. My mother won't help, but my mother-in-law comes to help me if I ask. In fact, she came two days ahead of time to help me clean the house a bit for this past weekend, when we hosted Thanksgiving/Christmas for my husband's side of the family (hubby fell and broke his leg Aug 22 and had surgery Aug 23 for a tibia-plateau reduction; he just returned to work Oct 31. We can't travel long distances this year, so going home for the holidays is out).

We just make things work. The biggest thing, my husband said, was to help me get better. As long as the house gets picked up and doesn't look like a pig stye, it can be dusty and a bit unkept.

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S.A.

answers from Kansas City on

I'm so sorry you're going through such a horrible time. What type of doctors have you seen? And they can't find anything? Have they
checked your Pancreas? I hope you have help with your family. If not,
can you ask neighbors and/or church? You didn't mention the ages
of your children, but I'm sure if you talk and explain to them about it.
Just let them know how much you appreciate them. Please update
and keep us posted. Feel better.............

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C.H.

answers from Joplin on

Support from other family members, like brothers and sisters, in laws, aunts and uncles, cousins, who could come over to help once a month to clean, if they take saturday a piece. Support from friends, church family for hot dishes for couple of meals a week, to help out your daughter's studies during the week. Most people would love to help but do not know what or how to help or what you need. Sometimes the company can be healing for you as well. Since you have been I'll for so long you problely not had a good visit. Realize that wonder woman had other super heros to help her. All you have to do is ask.

1 mom found this helpful

M.L.

answers from Houston on

Well, I grew up with a chronically ill father (Leukemia). So, I often took on more responsibilities than both my parents, because my mom was often taking care of dad. The children did almost all cooking, cleaning, school, we also worked after school jobs. Really don't feel bad, your daughters SHOULD be pitching in extra, and they likely don't like seeing you suffer, and it's the one way they can help. In fact, it will help them become stronger, more compassionate and responsible adults... very good traits.

As for you, rest as much as you can. You can help by making things as organized as you can. Maybe coming up with meal plans ideas or the bill schedule for them when you are feeling well. On days you are good, then you can have a family movie night together with popcorn on the couch. Write your family little letters telling them what is in your heart. Keep a journal, my family's most prized possession is the journal my dad wrote.

Reach out to your church, family, friends... they can likely help your family with meals, helping clean every once in a while. If you can afford a maid to come once a week, that would help a ton as well.

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C.C.

answers from St. Louis on

I was ill for about 1 year and then it took another year or so to feel close to my old healthy self. It was hard, between the medications, pain, and the not knowing what was going on. It was all I could do to get to work and get home so I could sleep or just sit. I had absolutely no energy. I hope my family understood and they pitched in to an extent and when I had good days tried to get more done. I had no guilt because I did not have the energy most days to worry about that. So, end result several treatments and 2 surgeries I am living again. It also took about 6 mos. for a diagnosis which turned out to be two seperate things. It is hard while you are ill, all I did was hope that they truly understood. I did talk to them and tell them I appreciated anything they did to help.

1 mom found this helpful
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