Helping women with chronic illnesses
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Priorities When Sick

I met my friend Stacy (pictured) at an endometriosis support group. While she no longer lives near me, we keep in touch. Her thoughtful support is greatly appreciated. (Thanks for the get well card, Stacy!) She recently sent me the following guest blog post which she described as talking about “priorities when you are sick”. Please note: If you are struggling with infertility and are sensitive about child references, it is worth noting that there are some in this post.

Stacy

I remember feeling fearless. I remember staying up all night rollerblading around the city with my friend, Chuck. I remember riding on the back of his motorcycle for hours at a time. I remember going on trips to the jungle in Ecuador and working hard doing translating for American doctors. I remember working my way through college with barely any sleep between my full time job and my full time status as a student. I treasure these memories because they are so different from my current reality.

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My life now is made up of daily decisions and the underlying fear that people think I am lazy. I know I shouldn’t worry about this but for some reason I do. I want to be the same fearless person I once was but I am no longer that person. The one thing I know for sure is that I will not feel as good as I once did. I still have a few good days but they are few and far between. What is more common now is feeling tired and experiencing lots of pain.

In trying to hold on to as much of the old me as possible, I try to determine what is important to me and how I can manage it with my limited energy. One of my big priorities is to give my child as normal a life as possible. I hate being sick and I don’t want her to feel cheated by it. It is important to me that my daughter has fun parties where I can meet her friends and their parents. I know how important it is that I have a large support system in place for her so she can have fun play dates if Mommy is a bit under the weather on a particular day. A typical party has a guest list of dozens of kids: her preschool classmates, her Daisy troop, her soccer team, her modern dance classmates, her ballet classmates and her neighborhood friends. I put together a theme a year in advance and do a little bit of work at a time as I feel up to it. Each Spring we have a Dragon’s Egg Hunt and I stuff eggs with stickers, candy and little toys throughout the year as I get good prices on the fillers. For fun during the hunt we have a craft (toilet paper tubes are a great and cheap starting material), a bunch of appliance box houses to graffiti and some snacks. It is a relatively easy way to have a big group over.

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For someone feeling less than healthy it is important to figure out ways to continue to do some of what we used to do before we got sick. I know I will never again have the strength to ride on the back of a motorcycle or trek through a rain forest but I can still do some of what is important to me today.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Priorities When Sick

14 comments

1 Jenni Saake - InfertilityMomNo Gravatar { 07.24.09 at 8:15 pm }

I can so relate! {hug}
.-= Jenni Saake – InfertilityMom´s last blog ..Having Fun Not Going to BlogHer =-.

2 JasmineNo Gravatar { 07.24.09 at 8:54 pm }

Hello Stacy 🙂 I’m sure all of us can relate to that fear of others thinking we’re lazy. But because I don’t have children it’s tough to imagine trying to be the woman you once were so your children don’t have any less of you. Even though I can’t relate in that area, I think they would appreciate your honesty versus teaching them that it’s okay to make oneself sicker (by pushing beyond your limits). But you did say do “some of what we used to” so that tells me you’re not pushing yourself too much 🙂

When I was in high school I watched my mother swallow Excedrin like candy to get through her grueling RN career (she was a visiting nurse, so she had to drive around all day). Because that’s how she handled her Migraines I started the bad habit of taking too much Excedrin – sometimes up to eight a day. When she was diagnosed with bleeding ulcers I wish she had been kinder to herself, and honored her limits better. The good news is it was a wake-up call for both of us.

I wish us all the strength to do what we love for ourselves and our loved ones. And I also wish us the strength it takes to say “No” when we have to.
Hugs,
Jasmine
.-= Jasmine´s last blog ..The Vestibular System =-.

3 JeanneNo Gravatar { 07.24.09 at 9:30 pm }

Jenni,

I know. Stacy did a great job explaining the guilt complex so many chronically ill mothers face and grapple with every day. {hug back}

Jeanne

4 Jenni Saake - InfertilityMomNo Gravatar { 07.24.09 at 11:07 pm }

Here’s another article I recently posted (actually linking to yet another friend’s article) about mothering with illness at http://infertilitymom.blogspot.com/2009/07/mothering-with-chronic-illness.html
.-= Jenni Saake – InfertilityMom´s last blog ..Having Fun Not Going to BlogHer =-.

5 JeanneNo Gravatar { 07.25.09 at 12:26 am }

Jasmine,

What a beautiful comment to Stacy. 🙂

Yes, I think all chronically ill patients struggle with the fear of being perceived as lazy by those who don’t understand our illnesses sufficiently. I agree with what you said about the importance of being honest with children about what’s going on (in an age-appropriate way, obviously). Yes, Stacy’s “some” reflects that she recognizes the healthy limits are different now (as I’m sure she would tell you).

I’m sorry your mom had to learn the hard lesson from taking so much medication to force her body to “perform” but I’m glad it served as a wake-up call for both of you.

I agree. I too wish everyone the strength to do those things that are achievable without worsening the illness or illnesses in question. I also wish everyone strength to say “No” when it’s is necessary. I have struggled with the “No” issue for years and have made progress. Sometimes saying “No” is still very hard, though.

Thank you so much for the great feedback to Stacy’s wonderful article!

Hugs back!

Jeanne

6 JeanneNo Gravatar { 07.25.09 at 1:19 am }

Jenni,

Thanks.

Jeanne

7 YayaNo Gravatar { 07.25.09 at 5:33 pm }

This is very true. Great post. I often wonder if I’m seen as “lazy” to some and that bothers me.
.-= Yaya´s last blog ..Friday Fragments/Focus Friday =-.

8 JeanneNo Gravatar { 07.25.09 at 10:18 pm }

Alicia,

In talking with endometriosis support group women from 1992 onward and in connecting with many chronically ill patients online, it is obvious to me that this is a very common issue. I have yet to meet a single patient who does not struggle, to some degree, with concerns over being viewed as “lazy”… or simply with being misunderstood by people who don’t “get” their illnesses. Here Stacy has hit on a key issue that impacts many. I have no doubt there are people who view me as “lazy”. This bothers me but I have learned I can’t control what others think. So I try not to focus on it. Sometimes this is easier said than done.

Jeanne

9 Melissa RalstonNo Gravatar { 07.26.09 at 9:25 am }

J – You know I can so relate to this post, I’m just saddened that I’m not the first one to comment! Much like Stacy, I’ve had to adjust to my new reality of being chronically ill. I also remember those carefree days when making plans and hectic schedules were the norm. I remember the dreams I’ve had of being able to “do everything” with my future children. The dreams of having the energy to complete my schooling and to have a very successful career. I remember those dreams well and grieve for them each day. At the same time, I have accepted that “this” is the new norm for me.
J has never known a “well mommy”. When he was just 3mos old, I received the cancer diagnosis. Several months later, I was diagnosed with fibromyalgia. And then it was rheumatoid arthritis of the right hip. J has seen me in more pain than I would ever like to admit. He’s seen his mother come off of a very strong fentanyl patch cold turkey. Even more recently, he’s been through the extreme anxiety of seeing me “faints” (his word for me passing out) and thinking that I was dead. We have had to teach him how to call 911, as well as how to use the speed-dial on the phone and call certain people in a certain order. None of these things should a child ever have to experience.
However, I try to “compartmentalize” my energy so that I have a certain pocket of energy to work with when it comes to him. I may not be able to go out and run with him as a kite trails behind us, or to even do the simplest of things such as take him to the park, but I still manage to bring some normality to his life. I do feel the guilt over being a chronically ill mom, which adds to the guilt of having been a (former) single mom. But I like to think that J has learned some lessons from all that we have been through.
J has seen courage in the form of me pursuing the treatments of my choice despite doctor’s recommendations. He has also seen courage and strength during my withdrawal of fentanyl. J has seen determination as I am not willing to have chronic illness take me over. J has learned respect for others no matter their physical limitations. He has had to learn these lessons a tough way, but I’m hopeful that they are lessons that will stick with him for life.
This past summer B, J, and I went to Jack’s Lemonade Stand. Jack is a child who has intractable epilepsy just like J, and who started this “simple” lemonade stand in order to raise money to help children who were staying at the hospital’s Epilepsy Monitoring Unit. I say “simple” when referring to the lemonade stand only because this particular event has raised in the tens of thousands of dollars. J has commented on how he wants to help Jack out next year at his stand. J and I have talked about how what Jack does to help others is similar to what mommy does, how mommy runs her support group and helps women worldwide to access information on the disease, to provide emotional support and just to say “I know what you mean”. From Jack and myself Jacob has learned the ultimate gift, the gift of yourself to others.
So while some people may doubt my ability to parent due to my illnesses (and trust me I’ve had comments on why I’d want another child when I already have so much going on), I do think that what I may lack in abilities I make up in another way. Just like Stacy, I’ve come to accept that limitations are just little bumps in the journey to rise over.
Take care J and thanks for the post,
Melissa
.-= Melissa Ralston´s last blog ..The Fertility Journey: Dreaded Thursdays =-.

10 AvivaNo Gravatar { 07.26.09 at 6:42 pm }

I know some people just think I’m lazy. I don’t even think it has to do with being a parent, although that multiplies it. (What do you mean don’t work but your kid is in full-time daycare at preschool??) (Not that anyone actually says the words, but I can hear it in the things they do say.)

It’s hard. I know parenting always means guilt, no matter how healthy and “perfect” a parent one is. But it sure seems harder when you add a chronic illness into the mix.

My 4-year-old broke my heart last month when I made a rare trip along to a birthday party she was invited to. It was outside in a park, and it was hot, and it flared my symptoms. We weren’t the first ones to leave, but we were among the first. Ellie was NOT happy about going, and we tried to explain that Mommy was tired and needed to go home and lie down. So she turned to me in the car and said, “It’s a lot more fun when you’re not here!” Sigh. I know she was angry and frustrated and it was past naptime and those were words she didn’t really mean except in the heat of the moment. But oh, it hurt.

Stacy, I’m sure your daughter appreciates all that you do to make her life special. You sound like a wonderful mom.
.-= Aviva´s last blog ..(Almost) Wordless Wednesday =-.

11 Twitted by fibroladen { 07.26.09 at 7:35 pm }

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12 JeanneNo Gravatar { 07.27.09 at 3:56 am }

Melissa,

Don’t worry. There’s no prize for being first to comment.

As normal as it is to grieve the losses, the acceptance you have found is a good thing. Yes, there is such a thing as a “new normal”.

My daughter has never known a “well mommy” either. While I had been sick for many years before she was born, my health deteriorated significantly after she was born. When she was 7 days old, I was re-admitted to the hospital for 10 days. I was really sick and my husband and I had a bit of a shock with adjusting to being first-time parents plus simultaneously adjusting to the reality of just how sick I now was.

I started getting new diagnoses left and right in this time period. I was simply bombarded! It was overwhelming and scary because I’d still be reeling from one diagnosis when they threw another one at me. It was a difficult adjustment.

The fact is that children of chronic pain patients are going to see them in pain and it’s no one’s fault. So I don’t think there’s anything to have to “admit” to. It is what it is. You didn’t ask to be sick. Of course you would rather J. didn’t see you suffer but you do the best you can. So, that’s all you can do.

If you needed to come off of the painkiller patch, then you did what you had to do. I certainly haven’t fainted as much as you but I do relate to what it’s like to be out and about with a young child and faint in their presence. In my case, it happened a number of times when my daughter was younger than she is now and I was terrified that she could wander off while I was unconscious. Instead, she stayed right by my side and made sure I was OK. As sad as I was that she had to see it, it warmed my heart that she did all the right things. (Most of my fainting occurs in doctor’s offices since that thin indoor/outdoor carpet so commonly used in doctor’s offices makes me really sick). Somehow she never thought I was dead. She somehow understood that this was a temporary state that would pass. (After the first incident she witnessed, I explained fainting to her and that seemed to help her understand what had happened).

We too taught her young how to dial 911, how to dial my husband’s work and cell numbers, etc. We taught her our phone number and address very early too in case she did ever need to call 911.

In a perfect world, a child shouldn’t have to experience this. I agree. At the same time, these are good things to know and we’ve all seen those incredible stories on TV of when a young child calls 911 and it really makes a positive difference.

Like you, I may not be the parent who takes her kite flying (though I enjoy watching her do it with Daddy)… but I enjoy playing Scrabble with her or reading Harry Potter together. I may allow my husband to be the main one to take her to the playground but I make a point to find activities I can manage to do with her without aggravating my symptoms severely.

I too feel the guilt. I think all chronically ill parents know this struggle.

My daughter has definitely learned some important life lessons from living with a chronically ill mother. She is more empathetic, compassionate, sensitive, and downright thoughtful than the typical child her age and I believe one factor that caused her to be this way is the fact that she has learned how to help me when I’m sick and she has also watched me act as group leader (volunteer) of a support group, helping others. So she has learned how to be supportive of me and she has watched me be supportive of others. I think this is a good thing.

She has been with me to a great number of doctor appointments. While I’m always sure to have books, paper, and writing utensils for her to entertain herself while waiting… I have noticed she does listen and pay attention in these appointments. So she gets to see me advocate for myself, ask questions, take notes to remember what the Dr. said, etc. This is hugely important because many people are never taught how to advocate for themselves when interacting with healthcare professionals. Eventually everyone has to learn to do so, to one extent or another, for their own care or for helping loved ones obtain proper care. She is learning these lessons at a young age so they’ll be second nature to her.

My daughter too has gotten a whopping dose of viewing what a difference determination can make. This skill can be applied to far more than health issues. She can apply determination to school work, music lessons, and more.

Again, my daughter too has learned respect for others no matter what limitations they may have. This too is an important life lesson. While children of chronically ill parents may learn these lessons in a tough way, the end result is that they learn these important lessons and are better for knowing them. I have no doubt these lessons will stick with my daughter for life. In fact, I’ve seen her gently “teach” others (cousins, for example) some of the lessons she has already absorbed. They say the best way to learn something is to teach it.

You had mentioned J’s desire to help out at Jack’s Lemonade Stand. That is a perfect example of J. wanting to help out a fellow patient. That’s awesome! I still can’t get over that lemonade stand starting out with one child and his family and expanding to net tens of thousands of dollars.

Speaking of The Ultimate Gift, did you ever see that movie? If not, you would just love it!

I think it is terribly unfortunate when people dare to question one’s ability to parent due to their illnesses. Who are they to sit in judgment? What do they know of the measures a chronically ill parent will go to to “make up for” the things he/she can’t do by substituting other activities that can be managed? (I remember some of the unkind comments that were made to you. I’m sorry).

I do think that a parent (chronically ill or not) who is committed to what is best for his/her child(ren) can “move mountains”, so to speak, and that people should keep their hurtful, insulting comments to themselves.

I agree that the limitations can be overcome with creativity, determination, and persistence.

Take care, Melissa, and thanks for the great comments!

Jeanne

13 JeanneNo Gravatar { 07.27.09 at 5:05 am }

Aviva,

I know some people just think I’m lazy too. Our society seems brainwashed that anyone not working full time in a “traditional workforce” job is somehow automatically lazy. This is a very bad assumption on their part. I once had a job where I worked over 80 hours per week. I work harder now than I did when I was at that job but few seem to comprehend how that’s possible. I only know it is very definitely my experience. (Everything’s hard work now 24/7. Heck, taking a shower is hard work). I agree that the “lazy” tag tends to be thrown onto chronically ill patients regardless of whether they are parents or not. I also agree that once children are part of the picture, the comments from the peanut gallery can really get interesting.

I remember when my daughter was going into kindergarten. A friend of my in-laws made me very uncomfortable. She quizzed me endlessly (at least it seemed endless) about how I was going to spend my time now that she’d be at school all day. I felt like saying, “Well, now instead of dragging her with me for the 45 min. each way trip to the city to see my specialists… I’ll go by myself. After the appointment, I’ll break a few laws regarding traffic speed to get home in time to get her safely off the bus. I won’t have time to eat, of course. That would make me miss the bus. You see, I have to allow time to find a spot in the hospital parking garage and it’s under construction. So, once you count driving time, parking time, walking in, waiting room time, paying the copay, the appointment itself, getting out of the parking garage after waiting in a very long line smelling exhaust fumes that aggravate my Multiple Chemical Sensitivity, paying the parking attendent, and driving home… I really don’t have much time to spare. That’s on a day with no expressway construction”. Instead, I nodded my head and got the heck away from this nosey, aggressive, intrusive woman as quickly as possible. Nothing I said was going to convince her I wasn’t lazy. It was pretty obvious she’d pegged me “LAZY”. So I didn’t bother trying to convince her otherwise. I too can tell by how people word things even if they don’t “spell it out”. Many are pretty transparent.

It is hard. Yes, all parents experience guilt. I think it’s absolutely harder when chronic illness is added to the mix. I have talked to many, many chronically ill parents and all of them struggle with this.

I’m so sorry you were upset by your daughter’s comment. I can certainly understand why it hurt and I would have had the same reaction. I have heat intolerance and I know that when it comes to heat, “it’s time to go when it’s time to go”. Period. (Otherwise, I’d be fainting in the middle of the birthday party). At 4 years old, it’s bound to be difficult for her to understand that you can’t help being sick. Even though her comment honed in on your being sick/tired and needing to leave due to that, you mentioned it was past her naptime anyway. So I’m guessing she needed a nap anyway. Right? You also mentioned others had already left. So, hypothetically, even if you were perfectly healthy… you might have left then anyway. In that case, she still would have wanted to stay and you still would have (I’m guessing) left since you’d already told her it was time to go. Only the “it’s a lot more fun when you’re not here!” comment might have been something different, such as her begging you to change your mind and go back or something. As hurtful as that comment was because it highlights your limitations from being chronically ill, it’s possible that she would have said something upsetting even if illness were not a factor. When kids don’t want to leave a fun place, they don’t want to leave. Illness or not.

What I have done with my daughter (who is now eight) is catch her at the “right moments” (in a good mood, recently fed, not overtired) and explain to her in age-appropriate language a bit about my limitations. When she was still very young (like your daughter) I just called all of my illnesses/symptoms “Mommy’s boo-boos” but I would explain details like what hurt/where. In other words, I didn’t say “I have fibromyalgia”. That’s a mouthful for an adult. I did say, “my boo-boos are having a bad day and right now my whole body hurts”. That way, she would know not to tackle me or sit on me because she understood that days of whole-body pain were really tough for me. For a more specific area, like with endometriosis pain, I might have pointed to my abdominal area and said, “my belly hurts right now”. Then she’d leave my abdomen alone.

Once I explained to her what was going on, she seemed better able to cope than when I just said, “I’m sick” or “I’m tired”. If I overused those phrases, she started to block them out and ignore me. Once I gave her specifics, she did better with it.

At times, I’ve made analogies. For example, she fell and cut her knee badly once and it was a memory that still hasn’t faded about 4 years later. So, one day I explained that as painful as that was… it healed up within x amount of time. It didn’t stick around and hurt daily or hurt for stretches (flare-ups), stop awhile, and then hurt again. The whole concept of chronic pain is what I was trying to get across to her. I have got to give her credit because she really seemed to “get it” with remarkable ease. I was really impressed.

So, try not to let that comment gnaw at you (easier said than done, I know) because you did what you had to do. Staying in the hot sun when feeling sick/tired like that might not make for the safest drive home. You did what you had to do. You did your best.

Thanks for the great comment. Try not to feel badly about the b-day party remarks. I know it’s hard.

Yes, Stacy is a wonderful mom.

Jeanne

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