Turning Straw Into Gold

Life through a Buddhist lens

5 Tough Choices You Face When Chronically Ill or in Pain

Here are five tough choices continually faced by those who suffer from chronic pain and/or illness. There aren't easy answers to the issues they raise: that’s why they’re tough choices. Read More

One and two are sometimes the same

There are, I believe, many patients who have given up on doctors.

They won't tell a new doctor that they have ME and CFS because they don't want to deal with the disbelief, the stigma, the ignorance or assumptions. Some go so far as to stop going to doctors all together or they go to walk-in clinics for non CFS or ME related issues. They never see the same doctor twice.

Many ME and CFS doctors won't see a patient without a referral perhaps reserving their time for patients who have already been screened for other diseases. On the other hand it also means in essence that they are turning away the patient who needs their help, but can't get a referral.

I believe it's referred to as a Catch-22.

Kelly - Yes it is a Catch-22

And I agree that many doctors don't want to treat people with ME/CFS. One of the dangers is, of course, that other problems will go undiagnosed. I hope things change soon.

Warmly,
Toni

An Accurate Description

Toni,
You have described my life almost perfectly. Being chronically ill has been a full-time job in so many ways. For me, I literally spend all my money (and some of my relatives' money) on an experimental treatment each month. This treatment has given me some quality of life and allowed me the ability to spend some time not being home bound and to generally experience fewer debilitating symptoms. But it comes at a very high price, not just economically. I must spend several hours a day detoxing and taking prescription pills and supplements on a tight schedule, fitting it all in on the twelve or so hours I am awake. Since people don't see that part of my life they don't have any idea what my life is really like and they wonder why I don't "move on" from being ill. I live a very unusual life, choosing between being housebound and in pain ALL the time or spending all my money and much of my time on an expensive protocol that provides SOME quality of life with the POSSIBILITY of some real improvement. Only those closest to me have any idea what I face each day and that in a very real sense I am fighting for my life. Thank you for reminding me that I am not alone.

Cyndi

Hello Cyndi

Yes…a full time job. When I think how naive I was before I got sick. I had no idea what chronic illness meant in terms of completely changing my life around or that it would be so much WORK.

Thanks for commenting.

Warmly,
Toni

So helpful

It's such a relief to read something by someone who really knows. I couldn't agree more that these are tough and tricky issues. One choice I find myself having to make all the time is when I get a call from family or friend and they ask how I'm doing. I don't know first of all if they are really asking or just making conversation. Then I must decide whether to tell them the truth... "All I can manage is staying in bed all day " or "about the same," or " not good." this is often followed by a question about what treatments I'm getting...what the doctor says, etc... To which I respond along the lines of " None," "the doctor has no answers,"...by this time I'm exhausted. On the other hand I feel like I'm betraying myself if I say "fine," or "better," when I really am feeling awful. Some people can't help running away when faced with chronic illness. I totally understand. But when they do I feel I've lost one of my tenuous connections to the outside world. I can't talk about plans because I have no idea how I'm going to feel tomorrow. I can't talk about things I've done...because I haven't done anything. What to do? That's the dilemma, the choice I have to make.

talking about health with friends

Dear Bonnie,

I also find talking about my health to people a tricky business. How to keep the relationship going with people I really care about, especially in the way that I want?
I particularly relate to the conversation issue you mentoned. I want to share my life with my friends, but I run the risk of having to talk about my health all the time. The conversation usually starts with "how is your health?" anyway and if not, the question is asked as soon as a gap falls.
I am glad my friends still want to know how I'm doing and that they haven't run away. But on the other hand I don't want to be 'their sick friend'. I spend almost every conversation finding that balance.
I also wreck my brain sometimes trying to find something non-health-related I can tell. Some anecdote that doesn't start with "When I was at the doctor..." or "I saw on TV..." That was very recognisable in your comment.
Thanks for sharing.

Hello Bonnie and Judith

I'm always looking for that middle path in talking to people too. If you have my book, "How to Be Sick," you might recall that when I began talking to my two grown children about matters other than my health, I found it to be a welcome relief from every conversation revolving around my health. It was then that I also realized how hard the change in my health has been on them, even though they've never complained.

Finding the right balance is tough. Thanks to both of you for sharing here.

Warmly,
Toni

thank you

I posted this on facebook and asked all my friends to read it. I described it as a PERFECT description of what it feels like to live in my head, as a person who looks well but isn't. I have said much of this to many people, but never so well and there's something more legitimate about it coming from someone who isn't me (doesn't that suck?). Anyway, I'm going to spread this article far and wide and suspect I'll be using it as a tool to improve the quality of my social life pretty much forever. THANK YOU!

Thanks Diana

This article does seem to have struck a chord with so many people. I think it's great that they're sharing it with others. It's the only way for others to know what it's like for us and, in your case, with the information coming from a third party (me!), maybe people will really listen.

All my best to you,
Toni

Excellent questions

Thank you, Toni. These are excellent questions. As I answered each one for myself, I thought "over time, my answers will change and change again". So I will ask myself these same questions a few times each year, look at any changes in my situation, and adjust my answers accordingly.

Hello Marcia

What a wonderful idea…to look back at these questions and rethink your responses a few times each year. I think I'll do that myself. Thanks for sharing this idea here.

Warmest wishes to you,
Toni

Of the five questions, #5

Of the five questions, #5 speaks most deeply to me........ With your words today, I now see my constant struggle to feel better, to do more, to be other than I am as an attachment to my pre-ill self........not being in the present and ultimately an 'exhausting' trait. I will add #5 to my daily practice of affirmation........... thank you, Toni

Hello Patricia

I, too, was terribly attached to my pre-ill self, as you so aptly put it. It was only when I let that go that I could start to heal mentally. This is the major theme of my book, "How to Be Sick." It was that important a change for me.

Warmest wishes to you,
Toni

You've hit the nail on the head - again

Thank you, Toni, for being able to put into words what many of us feel but are oft times unable to express.

It is indeed a "fight" and my wife and I refuse to give up! Do what you can, when you can, and know your limitations.

Also love the concept of naps and varying the time. When I was in the service I was working out every day after work. One day I had an appointment right after work and within 10 minutes my body said, "well, if we aren't going to work out, I'm taking a nap!" and I kept falling asleep on the person!

Hello Mario

I enjoyed your other note to me :-)

Yes, it's a fight and the key is to both fight AND accept. But, as I say, it's exhausting. I'm glad the idea of varying the nap times was helpful. Give my best to Bonnie.

Warmly,
Toni

Wow

It is amazing to me how you are able to sum up and express our experience in such a beautiful, honest and organized way. Thank you SOOOO much for your work! This article addresses exactly how I've been feeling lately and speaks to how very difficult, time consuming and exhausting everyday decisions are. I have been wrestling with acceptance vs. pursuing new treatments and trying to figure how much info to divulge to friends and family. I have watched certain friends drift away which is painful. I think I am getting closer to figuring out which friends I can talk to about what, but I am such an honest person that it feels unnatural to hide the truth. I'm working hard on it! One thing that CFS steals from us is the ability to be spontaneous. We have to so carefully think and plan out every minute piece of energy we might have or suffer the consequences. It makes me so utterly sad that I can't just pop over a friend's house to say hi or play with their kids. I can so relate to the story about throwing caution into the wind when going to the park with your granddaughter. I occasionally do that too when family comes to visit but it feels so crummy afterwards when I am in bed feeling so sick as a result. We are basically being punished and physically harmed for having fun which is very hard to cope with. Dealing with CFS and coordinating one's health care between all of the different specialists we see and who don't talk to each other for an illness that has no real treatment is definitely a full time job! Too bad we don't get paid for all of our hard work. From the bottom of my heart, THANK YOU for writing this!

Beth, your comment about our

Beth, your comment about our illness robbing us of our spontanity just struck a chord with me.. that is exactly how i feel.. yes every little detail of my days have to be pretty much planned out and even that is subject to change depending on how i feel that morning or that moment i'm supposed to do it. I can no longer just grab my purse and say im going to the store or something..a store trip is a long thought out process now, a list must be made, my oxygen tank must be filled. my boyfriend must be feeling ok to drive and most the time we have to wait till his daughter gets home because he cant walk the stores either so he has to be pushed in a wheel chair, so then i tax myself and rather than ride a scooter i walk a cart, so i am beat after a few minutes if we dont get the right day.. nothing is spontaneous anymore.. :(

Hello Beth

I've been thinking about how we can't be spontaneous anymore and how devastating that is. Perhaps I'll write about that soon. Reading through your experiences is like reading my own…and yes, too bad we can't get paid for all this hard work.

You are so welcome…and thanks for the kind comments.

Warmly,
Toni

Just what I needed to read

(What does ME stand for?)

I had to reschedule my Dr.'s appt this morning.

When I woke up, I felt as tired as I can feel and still be minimally functional. I've learned, mostly the hard way, to gauge my energy level first thing in the morning and accept it. I've found that I rarely add energy through the day so I try to live within that initial evaluation.

My son, who really didn't want to ride the bus, was chirping for me to try a shower, which I did. I really wanted a shower bad since I didn't get to have one yesterday. (Any one with tips on that one?). I took the easy does it approach for prepping breakfast and lunch. He took the bus. I was grateful not only to have good reasons to wake up and get moving, but grateful that I recognize my limits sooner than I used to and slow down voluntarily. It just doesn't all depend on me. I think I'm learning how to receive love as simple compassion.

I was so proud that I listened to the still small voice that said postpone your appt. I was rewarded with the memories of times I didn't listen and forged on, usually being unable to leave a place when I was ready to go because I would be thoroughly exhausted.

I connected with what you wrote, Toni, and was happy to stumble upon your writings. I've been dealing with this mostly with people near me and never thought to reach out electronically.
Bonnie, I relate. Most times when I feel terrible, i look good. Other times, like today, pain and exhaustion are obvious. Lately, I've been in denial and just kinda gloss over, I told some people, acquaintance type, that if I'm good enough to be up and out I sure don't want to talk about being in the bed or what doc said what, etc. Drop by on a day when I can't get out for that. Others think its depression and I can't correct them because it brings a smile to my face with some of their helpful hints. Oh well, I look for laughter in it and most mean well.

showers

I don't have much contact with many people, so showering just isn't a priority for me. A warm, wet washcloth to minimize serious odor in between 2 showers/week works for me. It doesn't take long for your scalp to reduce the oil it produces, so your hair won't look or feel dirty if you shower less frequently. When I know I'm going to be in close proximity to others and it matters, I try to shower the day before, so I have the energy I need to do the thing I needed to shower for. It's all about prioritizing. I'm constantly asking myself: "what's really important?" There are dozens of things that are better for me to do on most days, than to use energy being squeaky clean. If you haven't read "The Spoon Theory," I strongly suggest you do. Find it at www.butyoudontlooksick.com.

Hello Elizabeth

ME stands for Myalgic Encephomyelitis and is the name give to Chronic Fatigue Syndrome in other countries, such at the U.K.

I am so glad that you listened to your small voice and did what was best for your body. I don't know if you have my book, "How to Be Sick" but I talk a lot in it about how essential it is to treat ourselves as kindly and compassionately as we'd treat a friend in need.

Thanks so much for reading and commenting.

Warmly,
Toni

personal hygiene

Hi Elizabeth,

Isn't it a shame that showers have become so tiring? They used to be such a treat.
I find keeping clean quite a task now too, since I am sick. And at the same time very important for my sense of well-being and and self-respect. Keeping clean is an act of self-compassion for me.

I have various methods for washing, depending on how much energy I have and what needs to be done.
If I have a good day and can afford the energy, I take a shower sitting down. I use a cheap plastic fold-up chair. You know, the small simple ones for in your garden. I still love it when I can do it.
On a bad day I just wash myself with a facial wipe, or baby wipe, something like that. Either just the essentials (face, armpits, feet) or my whole body. You are clean and feel fresh and you don't have to towel down.
If I need to wash my hair as well, I do it sitting on my plastic chair in the shower, with the shower head, bending forward so only my hair and feet get wet. That makes a lot of difference for me compared to a shower. (Make sure your towel is within reach.) This will not work if you have a bad back, however.

I have also found hot showers a bit more draining than colder ones, so I make sure that the water isn't very hot, or I use luke-warm water to rinse at the end.
Because showering is so exhausting, I have found that I brace myself for it by holding my breath. Since I know this, I try to be mindful of my breath and relax the weight of my body to my feet and/or bottom. This helps me quite a lot.

I need to blow-dry my hair if I want it to look it's best. I don't know if you do that. I have found that sitting down for just a few minutes between washing my hair and blow-drying it can make a big difference.
And again I use cold air afterwards to cool my head. It seems to make a slight difference.

Like Anonymous, I plan the washing of my hair on the days before I have to do something, so I don't need to do both things on the same day. If have bed head, a little water and a round hairbrush will usually sort that out.

Hope some of this helps you. Good luck with finding and keeping your balance and coping with all of the other points Toni mentioned.

Dear Toni, yes it is an

Dear Toni, yes it is an exhausting full-time job being chronically ill.. ok first of all I do find that you have to pick and chose who you talk to about your illnesses and what you tell them. Like I tell my boyfriend everything because he is my dr before i see my dr. but then what i tell my daughter is almost everything but just enough so she wont worry to much, where as my boys i dont tell them much at all just enough to know how its taking a toll on me.
As for every little new ache or pain that comes up,, well i run it by my boyfriend first and he decides if we ride it out for a bit and see if it gets worse or if we make an emergency call to the drs. nurse or wait till our next appt. he has alot of experience in the medical care field..and he is chronically ill as well..
as for over-doing ourselves.. yes we are guilty of that. we do know our limits but sometimes on good days we will purposely push them and do more work then we should and we pay for it for days afterwards.. Like this past weekend. we had to work on our car to get it running for a dr appt on Monday.. we worked saturday put a good days work in got everything done that needed fixing all that needed done was putting things back together and jacking it down.. so we did that sunday, put the battery back in to take it for a ride.. go out of our driveway and bam.. another damn brake line breaks on us.. so now we have to fix that.. see what we get for pushing ourselves for two days.. now we are paying for it yet today and i had to find a ride for my boyfriend to at least get to the drs tomorrow because he is out of his Kadian and going through withdrawl badly..
as for following drs orders.. yes i usualy do but i do also do some alternative medications but the drs do know about them. since I have a heart issue as well its important my cardiologist knows.. I take alot of extra vitamins and such and we do watch what we eat..
as for do we actively fight to get healthy or just give into our illness.. well i'll never be actively healthy again, i never was, but yet i'm not going to just lay in bed and give into my illnesses either..I take it day by day, minute by minute because yes my energy level can change minute by minute at any given time.. so we take it as it comes for both of us.. we try to cover for one another if the one is having a bad day the other tries to do more work.. sometimes we both just have to have our little time in the morning on our computers with our coffee and such, have a light lunch and afternoon pills then go lay down but we try not to take a nap to often because we do get used to it easily but it seems we have been having a flareup this week so we have needed it right now..
so the best to all of my fellow sufferers..I wish you all some comfort and less pain..
Much LOVE and METTA,
Tina

Hi Tina

Thanks so much for sharing your experiences here. It's helpful to me and to others. And it reflects just how hard we work due to illness -- that full time job I talked about -- having to face tough choice after tough choice.

Warmest wishes to you and thanks again for commenting.
Toni

Very well written

So much of this article is right on the money and I appreciate your sharing it with us. I have not read anything else you've written so I don't know if you've covered the topic but the whole concept of pacing has helped me become functional. Whether it's the "energy envelope" or "jar of marbles" concept, understanding how much energy it takes and how long you need to recoup is the key to not "crashing" as my one support group calls it.

As for how much to tell or not tell or when to tell...I recently became "single" again and did some dating. The first man I dated couldn't handle it when I told him what was wrong with me and the last said I didn't tell him enough. Since it's a no win situation, I've decided it's not worth the effort and am perfecting my new lifestyle of crazy cat lady living on the mountain.

I will make it a point of reading more of your writings. Thanks for this excellent article.

Thanks Anonymous

In addition to my articles, you might find my book, "How to Be Sick" to be helpful. It's about healing the mind when we can't seem to heal the body! It's a very practical book with lots of exercises and practices, many of which has proven to be very helpful to people. And there are two year's worth of articles on this site. Just click on "Turning Straw into Gold" and you'll see a long list. Most are on health but not all of them are.

I do find pacing to be essential although it takes discipline (more of that hard work). I also think in terms of an energy envelop and a bowl of marbles. It's very helpful.

Thanks for your kind feedback and welcome to my blog!

Warmly,
Toni

I totally & completely agree

I totally & completely agree with this article...I've had to deal with every single thing mentioned...

Thank you for writing this. It's something I can share with my family & friends so they better understand all the things I have been trying to go through for years, so they can better understand how I feel about it.

Personally though, I did get better with alternative medicine (& got worse with conventional medicine. Conventional medicine marked me as "just depressed & stressed"... even though my blood tests were always off... One test said I had cancer, but my MRI showed otherwise. Anyways, my Video EEG showed I had temporal lobe epilepsy in the end, though medication did not help me at all). I used to get anywhere from 8 seizures to 40 seizures a day... & they were so painful...I also couldn't walk...I would just be so exhausted after 2 steps, I would just collapse. Desprit, I too looked for anything with would cure me, & I came across Ulan Nutrition Response Testing (as a pre-med student at the time, it somewhat made sense to me too). The good thing about Ulan is that they only train doctors (the winning plus for me). The things they discovered were bothering me I asked my conventional doctor to see if I had it, which they confirmed. I had parasites in my brain causing my issues, & after being treated with nutritional supplements through Ulan, I now only have about 1 seizure a week, my seizures aren't as strong as they used to be, I can walk again, my blood tests are normalizing, I don't have ripping pain anymore, & the list goes on. I too have wasted money on fake cares, but I can honestly say that this helped me when no one else could, & it gave me hope that I actually can & I am getting better.

What a great article! My take

What a great article! My take away today is related to "#4. Do we push our body to the limit or do we always play it safe?Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do."

I giggled when I ready this. I have been everywhere on a wide spectrum of "energy conservation and energy consumption" as far as my body is concerned. I find the biggest thing I've learned is balance.

Sometimes I don't heed my own body's warnings and overdo things because I'm sick and tired of being sick and tired. Then I end up paying for it and saying "No, I will never do that again!" Much like the alcoholic who has yet to get into recovery and went out and got drunk and created a big mess and the next morning wakes up scratching their head while looking at the wreckage "No, I won't drink like that again!" Then they're bombed that same afternoon.

Here is an example of my past couple days: I live in the midwest and the temperature outside has been atrocious. Yesterday I had to get to two places and they were both pretty far from home. Since I knew today I was off from work and it would still be FREEZING outside (and I wouldn't want to leave the house anyway), I decided to squeeze in 2 extra errands yesterday. I knew I was going to push my body, but I wanted that feeling of "I am superwoman - efficient, competent & capable multi-tasker!" I KNEW I would be paying for it in pain today but I also knew I would be in a safe place and have enough time to rest and restore. I will be practicing my restorative yoga, journaling and will spend some time with laundry and my higher power.

Peace, Blessings & Flowers!

Waiting too long.

I have nearly died twice since I contracted ME/CFS/FM at 10. A Bilateral Venous thrombosis in 1992 and a Ruptured Kidney in 2006. When you are in a great deal of pain for a long time sometimes something severely painful for most is not noticed until the situation is serious. I was in a rural ER and the Dr took pictures and sent them to a specialist in Australia. He analyzed them and had the ER doctor read the analysis back to him, so I got to hear it. I am a science writer, among other sorts of writing, and so understood. If I'd gone to the larger hospital I probably would have died before they got to me. They have an over the counter urine test in the US, AZO, which would have been useful. Though I knew I had an infection, I was refused a culture and sensitivity test by my HMO and if there is culpability, it is theirs.

The doctor who did not know how much fluid there was among the kidney stones was very well meaning and read my chart every morning to be sure that I was comfortable. There was a generational difference in opinions about how to avoid lawsuits. They younger Dr. was right, but I am younger too. People make mistakes.

add to the list: pain medication analysis paralysis

Toni: I resonated with every bit of your article and agree with what many commenters have said: it is wonderful to be so well understood.

I have an addition to your list that we migraineurs talk about a lot: the fact that insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get 15 to 18 migraines per month, as I do, the 9 pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it's not so bad that I need to medicate...but what if it gets worse?...and how many have I already taken this month? If I take more than 4 by mid-month, I won't have enough to get through to the end...but if I let it get too bad, then the medication doesn't work as well and I am down and out for a couple of days...

Ugh.

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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