How To Be Sick: Discussion 1

This is a book for people who will not be their old self again and for all those for whom, at least now, getting better isn’t possible. This is a book that most reassuringly says even to those people, “You too are going to be okay–even if you never recover your health!” -Sylvia Boorstein

Author Toni Bernhard (who is participating in this book club!) tells us, in the preface of “How To Be Sick,” that she wrote this book “to help and inspire the chronically ill and their caregivers as they meet the challenges posed by any chronic illness or condition, including: coping with symptoms that just won’t go away, coming to terms with a more isolated life, weathering fear about the future, facing the misunderstanding of others, dealing with the health care system, and for spouses, partners, and other caregivers, adapting to so many unexpected and sometimes sudden life changes.”

In the section of the book titled How Everything Changed, we first read about how Toni got sick, and then how–to her surprise and bewilderment–she stayed sick.

Discussion Questions

  • How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
  • Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
  • Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

71 Comments
71 comments
  1. Lisa H says:

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
    It’s taken me years to realize that. Sometimes it seems really, really clear to me and other times I’ll go months without thinking about it. For me, it waxes and wanes as the disease does.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
    There’s been a lot of denial, mostly among extended family members. I’ve gotten a lot of “If you have this disease…” from people that should know better. People don’t want to believe that there’s something terribly wrong with someone they love.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?
    I’m still terrible about overscheduling myself and trying to do too much. I’ve been working at downsizing the amount of stuff in the house lately, so there’s less to take care of, but even just getting rid of stuff is a lot of work. I’m also not great about keeping up with physical therapy exercises. It’s not that I’m refusing to do them, I just don’t put them really high on the priority list and they really need to be.

    Thanks for hosting this discussion RA Guy! I am really enjoying the book so far! :)

  2. MamaNym says:

    I’ve lived with chronic pain, joint pain and inflammation, exhaustion, etc. for most of my life. For years my doctors told me it was all in my head, a symptom of my depression, etc. Then, in February 2011 I awoke with an ankle that had such severe limited range of motion I could barely walk. Nearly three months later my pain was overwhelming, more and more joints were affected, and after more tests done by a rheumatologist, I was diagnosed with psoriatic arthritis and ankylosing spondylitis. By June 2011, I was walking with two canes or using a wheelchair – which I still do to this day. The previous June I was hiking through the hills of Connecticut with a 25 pound child on my back – it was a HUGE change in my abilities and dramatically changed my life and the lives of my husband and five kids. Treatment was delayed by other health problems, and after diagnoses of simple fatty liver, pre-diabetes and celiac disease, I was finally able start Enbrel 7 weeks ago. My PsA and spondylitis are so aggressive and so much damage has been done already that I’ll have chronic pain for the rest of my life, even if we get the PsA under control. My doctor wants me on high dose methotrexate as well, should my gluten-free diet help my liver issues enough that I can start taking it.

    I was in denial of my limitations for a while, but living in my body didn’t let that last long. My husband is, to an extent, still in denial of my chronic pain and exhaustion, but he’s coming around. It complicates things even further that, as a newly diagnosed celiac, we have had to change our eating habits and limit the amount and location of gluten in our home, which has brought on even more life changes. It’s a lot to deal with at once.

    Friends and family have reacted in varying ways. One friend totally overreacted to my diagnosis and expected me to put my life completely on hold to take care of myself, not realizing that doing things I love and am capable of doing is of utmost importance to my mental and emotional health. Others have no concept of what I go through on a daily basis and that I cannot commit to plans of any sort at this point beyond a hope that I’ll make it to whatever it is to which I’ve been invited.

    I’m a very giving (and somewhat stubborn) person who does too much for too many. That’s just who I am. Getting that under control and learning to say things like, “I already have eight children in my care today, so I’m sorry I can’t take on your two children, even for a couple hours today,” was a huge step for me. I learned to delegate responsibilities in the non-profit organization that I co-founded, as well as in my household. I learned to slow down and enjoy the scenery. I learned to say no when asked to do something that might be out of the realm of my abilities.

    I also still allow myself to do things I probably shouldn’t – as long as they’re not going wreak too much havoc. For example, the other night we had 1-2 inches of snow on the ground. My husband was on his way home from work, so I went out and shoveled (pushed snow to either side of) our steep driveway. My five kids were sleeping. Snow was gently falling, and it was a crisp, peaceful evening. It felt good to be doing something “normal.” I knew I’d probably pay for it the next day, but it was worth the price paid.

  3. Jay S says:

    My answers to the 3 discussion questions:

    1) My situation was similar to Toni’s. My “Paris” was camping in the North Carolina mountains. Woke up in the night in complete pain, struggled into the nearest ER, suspected I had lupus like my mom, but was diagnosed 2 months later with RA. I was in so much misery I knew from day one things were not likely to go back to normal.

    2) I tried and tried to keep working which was part denial but mostly I wanted to keep working. Toni’s quote on page 12 (kindle location 453) starting with the words ‘It’s easy…” nails the way I felt.

    3) Trying to work when I could no longer be productive probably did me no good.

    Three passages I marked in the 1st 2 chapters were: p.12 “Even though…”; p.12 :It’s easy to look…”; and p.14 “When you are as…”.

    I hope there are many replies and the discussion gets lively. Thanks.

  4. Toni Bernhard says:

    Hi Lisa,

    I can really relate to your comment, “I’ve been working at downsizing the amount of stuff in the house lately, so there’s less to take care of, but even just getting rid of stuff is a lot of work.” It’s a Catch-22 isn’t it? We’ll do better and cope more easily if we could downsize our environment, but we’re too sick or disabled to perform the tasks that are required in order to downsize! Sometimes I get frustrated about this and have to remind myself that being sick is a job in itself (brushing my teeth, showering, preparing food take all the energy I have), so it’s not surprising that I don’t seem to be able to downsize my environment.

  5. RA Guy says:

    I took me years to realize that I was living with a chronic illness. During the first couple of years my symptoms were very minor and sporadic, so it’s not too surprising that they didn’t register as anything critical. It was only around the third year that I started losing the use of my knees, and I’d wake up with more pain than was even imaginable, throughout me entire body. Similar to the book, there was even a point where I just thought I had a really bad flu. I finally woke up one day, though, and said that something was seriously wrong…that nothing was supposed to hurt this much. Still, I continued to maintain thoughts that the pain would one day just all go away, for years after realizing that I was living with a chronic illness.

    A few members of my family experienced feelings of denial when it became obvious that I was living with rheumatoid arthritis. At the time, I was hurt that I couldn’t talk to them about what was going on, and that they couldn’t offer some of the support that I so desperately longed for…but looking back, I’ve realized that everyone goes through the acceptance stage at different rates. I’ve also come to appreciate how hard it must of been for them to see everything that was happening; at the time I was only considering how hard it was for me. They’ve since passed the denial stage though, and continue to offer me all of the love and support that I could hope for.

    There have been many, many, times where I want to believe that something–from going to the gym on a regular basis, to maintaining a full-time work schedule–is helping me, when in fact these activities were causing more pain, stress, and fatigue. It’s hard to realize that sometimes, things just have to change. (A lesson I’ve only recently learned.) Making these changes doesn’t mean giving in to my disease, as I once thought…I now think quite the contrary, as I’ve discovered that it’s a way to reclaim my life, while respecting the limits of living with chronic illness.

  6. MamaNym says:

    Toni and Lisa –

    I’m right there with you on the downsizing. My goal is to give away / get rid of 2012 things this year. We have five kids, a relatively small house, but lots of stuff for our small space. I strive for simplicity.

    I find it helpful to do one small area at a time. When I was diagnosed with celiac, I had to totally reorganize my kitchen and dining room (one open room with an island separating them). I went cabinet by cabinet, purging unused dishes and cookware, paring down to what I actually use. Then utensils, then glassware, etc. etc. etc. Although I’d like to have gotten it done in one weekend, it took weeks.

  7. Barbara says:

    I haven’t been able to get the book yet (I’m hoping to have it by next week), but I hope I can still make a comment.

    It’s been almost three years since I was diagnosed with ulcerative colitis and severe “connective tissue disorder” (inflammatory osteoarthritis, next thing to RA, really). Now, two major surgeries later, minus my colon, and dealing with an ileostomy, and trying to handle the pain and day-to-day trials of living with my arthritis, I am only beginning to realise–or rather, accept–that things are never going to be the way they “used to be.” I’ve known I had chronic illnesses, but I think, in the back of my mind, I kept hoping they could be fixed somehow. I’m beginning to deal with the idea that they can’t be fixed, but it’s very difficult.

    My family has for the most part been very non-supportive, constantly minimizing my issues (“oh, yeah, we all get aches and pains”) with one family member literally ignoring me and changing the subject every time I talked about the health issues I’ve had to deal with. That has been very hard for me to deal with, and as a result, I’ve slowly been letting go my relationships with most of my immediate family, because their attitudes just don’t help me, and I have enough hard stuff to deal with.

    The change I have the most trouble sticking to, even though I know it has a direct impact on how I feel, is my diet. Since my diagnoses and my ileostomy, I have completely changed the way I eat, and sometimes I just resent that I’ve had to give up so much, and eat things that I know will not help me feel better. Partly because of the prednisone I took right after my UC diagnosis, I am having so much trouble losing weight, and feel no motivation to eat right, or exercise, which I know I should be doing. As a result, my energy is low, and it just becomes a vicious cycle.

    I am really looking forward to reading “How to be Sick” because I really need to learn better ways to cope with all of this, living with chronic illnesses that are not going to go away. I’m facing more surgery this year, and I’m feeling pretty discouraged at this point.

  8. Barbara says:

    MamaNym, I love your idea of getting rid of 2012 things this year!! I am a packrat by nature, and I know I have at least that many things I could get rid of. I moved last May from an apartment on the third floor to the main floor of a house, just to avoid stairs, which were becoming too difficult to climb every day. But this house is not as spacious as the apartment in many ways, and I’ve had to crowd myself into a living space just so I could avoid stairs. Getting rid of stuff I do not use would be a big help.

    What I wanted to ask is, are you keeping an actual list, or is the 2012 things just a figurative number, a goal to get rid of anything you don’t use?

  9. Thrive with RA™ says:

    Hi Everyone, including RA Guy and Toni,

    Happy Chinese/Lunar New Year (of the Dragon)!

    Thanks for this book discussion. Toni, I bought and read your wonderful book, How to Be Sick and wrote a supportive review about it last September (http://thrivewithra.wordpress.com/2011/09/12/flare-thee-well-my-friend-a-book-review/), which you may recall you tweeted about. :) This book resonated so very well with me, as I have chosen many of the principles referenced in the book to incorporate into my own well-being. Thank you.

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    Like Toni, I too had a wicked, flu-like virus hit me during a romantic vacation with my husband – she with Paris, me with the Pacific Islands, but after one week it went away; three months later this raging “flu” came back with a vengeance and lasted 30 days. My thought was that it was the worst virus ever, not that it was anything more serious. I was tested for Strep Throat, but nothing else, as I assumed it was a virus, and should just let it “run its course.” The RA symptoms were intermittent after I somewhat “recovered” from this “flu”, so I was still in the dark. When 75% of my hair fell out over a two-month period, two months later, I finally went to my internist, who was insistent I see a Rheumatologist and be tested for RA, due to the inflammation present. I was busy with life, only intermittently bothered, so I waited another three months when the symptoms were no longer intermittent and saw a Rheumatologist, who diagnosed me with an aggressive case of Severe, Seronegative RA. Two other Rheumatologists since then have reconfirmed the same diagnosis. I don’t believe I was in denial, but was blissfully ignorant.

    It took me ten months to have a full understanding, but since it’s only been 20 months since onset, and one year since diagnosis, I still have a lot to understand.

    Life isn’t the way it used to be, but I still have dreams and hopes that I am already fulfilling – dreams from prior to onset, as well as new ones. I am as flexible as I need to be – to adapt to change in symptoms, or whatever comes my way. I have chosen to live this life with faith, training my focus to remain on the bigger picture.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?

    My husband and sons were absolutely seamless in assuming their roles as caregivers and champions at home, as well as my mother from afar – for which I am eternally grateful for. There are some other, close family members who have chosen to distance themselves from me, for whatever reason; perhaps it is their own coping mechanisms. Additionally, several friends completely vanished, but I am not bitter about it. Different people have different thresholds in handling discomfort; chronic illness, and my particular brand of RA was just not within their scope of handling. I am fine with that.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    I did not have a problem with adapting to life with RA or making changes to accommodate my new health requirements. I made an immediate decision once I was diagnosed, to eliminate all stress inducers within my power, including one of my business pursuits.

    Thankfully, my main profession and interests were easily accommodated, despite RA. Having the joy of creativity in my life, along with my family at home have brought me tremendous happiness, fulfillment and support.

    Thrive with RA™

  10. RA Guy says:

    I’ve recently started practicing what I call my “Rule of Thirds.” What I used to do in one sitting/afternoon/day, I now try to divide up into three.

    A couple of months ago I practiced this when cleaning the corner of my patio…instead of doing it all in one afternoon, as I would have done in the past, I did it over the course of three Saturdays.

    And in December, when it was time to put up the Christmas tree and decorations around the house–something I’ve always previously done in one afternoon–I broke it up into three consecutive days.

    It may take a little longer to complete things, but for me this is a perfect trade-off…I’m less tired, can actually do more over the long run, and have found that I flare less frequently. Win!

  11. Prakasha says:

    Thanks so much for this discussion, RA Guy. And, Toni, thanks for your lovely book.

    1. How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    About 5 years. RA hit me suddenly & very hard physically. Before that I’d been tremendously healthy. With just a few lapses, I’d lived a very healthy lifestyle for many years and been quite active. For a very long time I couldn’t accept that I now had a serious disease that was going to stay with me and alter my life forever.

    2. Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?

    Oh yes! (laughing) I was in denial for a looong time even though I was getting medical care for it and though my life was vastly different after RA arrived on the scene. Finally I was able to accept RA’s continuing presence and start looking for a new normal–accepting it & adjusting but learning to live the best life I possible could. I’m fortunate to have many loving people in my life, but I’d say that most of them have some form of denial about my RA; I’ve stopped trying to convince them of anything.

    3. Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    Yes. In spite of my acceptance, mentioned above, I often have little “tantrums” where I sort of talk back to the RA. for instance: “I’m not supposed to open jars with my hand? Ha! This time I’m going to do it anyway. So there!”

  12. Jane Hinrichs says:

    For the first month or more when I was diagnosed with RA (and had actual visible proof on x-rays of joint damage) I was a basket case. I have seen the bad stuff RA can do to people in in-laws. Now I’ve come to the stage where I just don’t talk about it. My family loves me but none of them want to mention the RA. They are pretending it isn’t there. And sometimes this makes me mad, but it is also okay. It is my battle to deal with I guess. And as I look back I guess I am not answering these questions correctly. I guess maybe I am still dealing with and coming to terms with having a chronic illness. I’ve been dealing with flares for a number of years but it wasn’t until last summer when I was diagnosed. Before I just told myself I was a wimp. At least now I feel I am justified in taking a nap. Sometimes I feel really alone with it (which is amazing since I have a husband and six children in the home). Oh, my comment is a downer — having a kind of rough time right now. But it will get better. It will get better.

  13. Lisa H says:

    RAGuy: I love the “Rule of Thirds.” That does seem to be about right these days. I’ve been moving so slowly with just about everything.

  14. Lisa H says:

    MamaNym: That’s exactly what I’m doing: one little area at a time. And I’m giving myself entire days to finish jobs that I used to do in a couple of hours. Good luck to you (& Barbara, too!) on your downsizing.

  15. Lisa H says:

    Toni, Thanks for replying! I’m finding your book hard to put down. I am bringing your description of ME (the cognitive side) in to my neurologist with me because it fits what I’ve been dealing with so well (and the testing has been endless so far).

  16. Cathy says:

    1) I have to admit that I am a slow learner. When I was diagnosed with RA in 2004 and I was pretty certain that the drugs would take care of my symptoms and I would move on. When they didn’t seem to help I was certain that alternative treatments would be the answer and once I found the one for me, I would move on with life and RA would be a distant memory. However, I think probably when I finally chose to believe that I had a chronic disease was in 2010. Finally coming to terms with the fact that I have a chronic disease was probably the most freeing experience I have had with RA. Once I realized that I would be dealing with this forever, I realized I couldn’t keep fighting so hard against it. It was truly the turning point in how I feel today.

    2. No, I think everyone around me was thankful that I finally got what they had been seeing for years!

    3. Most definitely! I can be quite stubborn. I decided early on that I was not going to purchase any aids to help me. When I was at my worst, I should have been using a cane and had handy kitchen aids to help me. Maybe it was part of my denial and belief that this was a temporary thing but I said “no” to all aids that may have helped me.

    I am not sure that my refusal to use aids was a completely bad thing for me. I had a vision of where I wanted to be and using the aids did not fit into my vision. I really believe in visualization when dealing with a chronic disease and I needed to see myself doing things. If I started relying on aids, I was afraid the vision would not exist anymore.

  17. Cathy says:

    Barbara, my heart goes out to you. Every day that pain has been an issue for me I have realized how fortunate I am to have a supportive family. I can’t imagine what this would be like without that support. I hope that you can find it here.

  18. Cathy says:

    I remember one year my mom came to visit. I did absolutely no cleaning before she came as the pain was too much. Instead I remember sitting with my kids reading before we headed to the library. One of the kids said, “This feels really weird that we aren’t cleaning.” It was liberating to know I was spending my energy where it needed to go – reading with my kids and visiting with my mom, not cleaning a house. I went with the philosophy that my mom has seen my house clean before so she knows I know how to do it. Ha! My family probably wishes I hadn’t kept that philosophy now that I am doing better.

  19. Barbara says:

    Thanks, Cathy! So sweet of you to offer support. I do have SOME family support: my aunt (just a few years older than me) is the rock of my life, and I could not get by without her. And I have some wonderfully supportive friends. But sadly my siblings range from, as I said, outright denial/ignoring my situation to actually judging me (things would have gone better if you had done this or that). So I’m trying to just focus on people who HELP me, rather than hinder–people like you! :)

  20. RA Guy says:

    Jane, I don’t see your comment as a downer. Actually, I see a lot of honesty and truth in your words. Thanks for sharing your feelings.

    In my case, it took some family members a little longer than others to come around and accept my chronic illness. Like you say, they never stop loving us; I just think they sometimes don’t know how to respond or react…so they don’t. There’s a book on this topic that I recommend, if you’re not already familiar with it:

    The Etiquette of Illness: What to Say When You Can’t Find the Words

    Wishing you the best.

  21. Joan Hagy says:

    First let me say, I love the book. I find it soothing.

    ***How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’? It’s taking awhile. I was dx’d in the spring of 2010 and I think I’m still in the acceptance phase.

    ***Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial? Yep, me!!!

    ***Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good? I’m still teaching even though I know it increases my chances of illness. I even read that I have a 30% higher chance of dying from this disease because of my profession.

  22. Wren says:

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    I had several flares, both major and minor, over a period of about nine months before I finally went to my GP. I was attached to a U.S. Army base as a civilian at the time, and there wasn’t a rheumatologist available. My doc was an Internist, so he did the blood tests, etc. and, because I showed a positive rh factor, diagnosed me with rheumatoid arthritis. It took me a lot longer to realize and accept that my life would never be the same as it had been before the diagnosis. My experience with doctors and illness in my life up to then was that my doctor gave me medicine that made me well. Good as new. It was stunning to discover, after taking many, many different medications, that the RA and its painful symptoms weren’t going to “go away.” That was 24 years ago. Today I can accept that I have this disease, but I still hope and long for the magic med that will finally get rid of my RA once and for all.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?

    I never had the luxury of denying my RA. It was obviously and painfully present in the form of agonizing joint flares that lasted anywhere from 12 hours to four days, with a few days to a week in between during which I’d feel perfectly well and pain-free. Likewise, my husband, my daughter and our friends weren’t given the luxury of denial, either. There I was, unable to walk one day, unable to hold a coffee cup unless I used both hands the next.

    On second thought, maybe there was an element of denial: I remained almost as busy and active as I’d been before the RA. I worked and did things with family and friends in spite of painful flares.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    Yes. Unless a flare was so bad I literally couldn’t bear to move, I worked, I traveled, I walked all over the German city I lived in and I continued to take care of my family and my home. Looking back, I can hardly believe I did as much as I did. But back then, I knew SO very little about the disease. It never occurred to me that walking all over old Bremen with a flared knee was unusual. I just bit down on the pain and kept on. I had a responsibility to my family and my employer, so I just pushed on through.

  23. April says:

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
    – well… I’ve had the official diagnosis of RA for just over 2 years. I am starting, now, to realize that life isn’t ever going to be the same… I knew long before my diagnosis that I had something not right, sometimes I knew I has something very very not right, but I’m only starting to realize how not the way it used to be it never wil be again.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
    – my husband still lives in a world of denial. It is funny… he seems to think that just because you take obscenly expensive drugs they should magically just make everything right again. It doesn’t. It won’t. I will have better days and worse days. It won’t go away.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?
    – I won’t give up writing or walking very far (half marathons) no matter how much I hurt.

  24. Rhonda says:

    Barbara,

    I too feel overwhelmed sometimes by the “underwhelming” consideration of those closest to me. My Mother and Mother-in-Law have always been the ones who cut to the chase and really saw what was happening to me. I lost my Mother-in-Law a month ago quite unexpectedly – and I miss her quiet way of simply understanding. I have a husband, two grown children, and five grandchildren – none of whom really want to think about my RA, much less talk about it. It’s almost like they actually push me for more and more, thinking that if they don’t acknowledge it, it doesn’t exist. Don’t get me wrong, they all truly love me – they just can’t seem to come to terms with my limitations. But, hey, it’s a heavy load to carry – so I just choose to not let myself be bitter about it.

  25. Toni Bernhard says:

    Hi Barbara,

    I’m glad that my book is on its way to you. I hope with all my heart that you find it helpful. I, too, have had to deal with some family members who haven’t been supportive, particularly one person who has abandoned me because I don’t feel it would be beneficial for me to follow his health protocol. He’s not even a doctor! I talk in the book a lot about how I gradually was able to turn my bitterness toward people who don’t understand my situation into an acceptance of how they are. I know they wish me the best even if we are no longer close.

  26. Lyn Burnstine says:

    I think we are twins separated at birth. I relate to so many things you have said. Yes, there are major differences: I am 79 years old and have lived with RA for 55 years, Celiac for 7, but our attitudes are so much alike. Keep on finding the bliss in your life and doing it even if you have to pay a price. I always have–yes, I’ve overdone, but life is to be lived and loved and rejoiced in, and those sparkling snow-covered steep driveways at night are worth the pain next day. Wishing you luck.

  27. Toni Bernhard says:

    Prakasha – I think it’s a good sign when we stop trying to convince people how limited we are. It just takes too much of our energy! And I’m glad to know I’m not the only one who still throws a tantrum although maybe it’s more of an occasional sulk these days than a tantrum.

  28. Toni Bernhard says:

    If we chose wisely when and how much to overdo, I think it’s good for us too. I attended the wedding of a friend recently. I had to skip the reception and I knew it would land me in bed for days and days, but it was worth it. And it helped that I knew this was a conscious decision I’d made to go ahead with this activity and that I was willing to accept the consequences.

  29. Toni Bernhard says:

    Rhonda – I’m so sorry that you lost your mother-in-law. I just wanted to extend my condolences to you. It must be so difficult, especially because she was such a source of support for you. It’s so inspiring to read that you’ve chosen not to be bitter that your family doesn’t completely understand how difficult the illness is for you. Brava (as we opera fans say).

  30. Toni Bernhard says:

    Jane – I didn’t see your comment as a downer either. Your honesty is refreshing. I think these mixed feelings toward loved ones are very common. It’s frustrating that they’re not completely attuned to how hard it is for us, but at the same time, we appreciate that they really do love us. It’s just another tough thing for us to deal with. Most people have no idea that the actual illness is only a fraction of the challenges we now have to face.

  31. Toni Bernhard says:

    Joan – I’m so glad you find my book to be soothing. That’s wonderful feedback for me. It lifts me up. I hope you’re continually re-examining continuing to work and that if becomes too difficult — where the cons outweigh the pros — you’ll look for alternatives.

  32. Toni Bernhard says:

    Cathy – It’s only been since 2010 for you, so I’m not surprised that you’re still working on acceptance. It’s an ongoing process for me, even after over ten years. It has gotten easier though, partly because I’ve forgotten how it felt to be perfectly healthy! Maybe that’s some kind of blessing in disguise.

  33. Connie says:

    My first comment has to be how much I love this book. I first read it almost a year ago and have reread it again again ever since.

    1. I was diagnosed with RA three years ago. It was at least a year later that I began to move toward acceptance that my life had changed and had changed a lot. My disease, in a mild form, came and went over a period of about ten years. In late November, 2008, I suddenly was totally exhausted. For about two weeks I could barely put one foot in front of the other to walk. One morning in mid-December I woke feeling generally ill and in agony. I soon realized that almost every joint was hot, red and swollen. My GP saw me right away and told me that I had either RA or Lupus. I was diagnosed with sero-negative RA soon after. The disease hid for about a week again and came back strong. For a while my rheumatologist was not sure it was truly RA. He prescribed Humira a year ago and since I responded positively to it, he decided RA it is. I have not had a day of being symptom free since that week after my first big flare.

    2. My husband had problems accepting my new limitations most of all. He would complain about my lack of energy & decreased activity and pushed me to carry on with household chores and work full time. He became ill with pneumonia about seven months after my diagnosis. After he spent a week in the hospital and several weeks recovering after, he apologized to me and told me he understood. He is now the most supportive husband anyone could ask for. I can’t help but feel guilty about the burden he carries and he never complains.

    3. I still work full time. This really is ALL I can do. I have no choice financially. This leaves me with no energy to do other things. I push myself to go to work and probably miss less time than a lot of my healthy co workers. When I do take a few days off it makes me realize how nice it is to rest and enjoy my family and have the energy to cook a meal.

  34. Toni Bernhard says:

    Wren – I was also stunned to discover that doctors didn’t have magic pills to cure everything. When I didn’t recover from the acute viral infection, I just kept going to the doctor waiting for that magic pill. And, of course, ten years later, I still hope it will show up some day. The difference is that I haven’t put my life “on hold” waiting for it. But do I want that magic pill to show up? Yup!!

  35. newsaddict1 says:

    Realizing that I wasn’t going to get better was an agonizing realization. I remember the details, every details. I just felt so tired, I left work early on Thursday and Friday. Worked Monday, then went to the doctor. Doc assured me that the meds would work and I just had a sinus infection. I missed work the rest of the week and saw the doctor two more times. That Saturday night, I remember laying in my bed, crying, as I realized that I felt worse than I did at the beginning of the week. I could barely walk and breathing was labored. That was in 2006. My illness is worse…but I’ve lost my two biggest advocates. My husband, to a prescription drug abuse, and my dad to death.

    Now, I’ve learned to be kind to relatives who say “you look fine.” and I’ve also learned to work twice as hard so my co-workers don’t blame any departmental slow-downs on my illness.

    Blessings to all.

  36. Joan Hagy says:

    Toni,
    I went to a Catholic college and we studied all religions. As I read your book, I keep saying to myself, “I remember that!” I loved the unit we covered on Buddhism, the truths, the 8 fold path. It really resonates with me. =)

  37. Joan Hagy says:

    April,

    I think my husband is in denial too. I mean he knows, but he forgets. He asks too much of me at times, not realizing I’m not being a wuss, I’m hurting or I’m so fatigued I cannot see straight! =)

  38. Toni Bernhard says:

    Hi April. We’ve been talking above about how we learned that doctors don’t always have a magic pill for us. I’m working on a piece on “things I didn’t know before I got sick” and that one’s been on the list for a while. And here you are taking obscenely expensive pills and they aren’t “magic” either. I was on an antiviral for a year that was also obscenely expensive. In fact, when I think of the amount of money I’ve spent in the last decade on experimental treatments (because there is no approved pill for Chronic Fatigue Syndrome), it makes me shutter!

  39. Toni Bernhard says:

    Hi Connie. I’m so glad to hear that you love my book. It means so much to me to get this kind of feedback! It makes me feel that all the hard work and toll it took on my health was worth it. Your story of how your husband came to accept your diagnosis is very moving. I wanted to tell you that from my personal experience with Tony (whom you know from the book) there’s no reason for you to add the extra burden of feeling guilty about all your husband does for you and how he never complains. He does this because he loves you. That’s nothing for you to feel guilty about!

  40. Toni Bernhard says:

    Newsaddict1 – I’m so sorry to hear about your husband and your dad. It must be so hard. My heart goes out to you over their loss.

    Interestingly, I also remember vividly—in detail—the doctor’s appointment where I realized I wasn’t going to get better. I wonder if that’s true for others too.

  41. Leslie says:

    I think that intellectually I know that this is a chronic disease but I’m not sure I have fully internalized it yet. I am still in the early stages of treatment and still hopeful that I can be one of the lucky ones and achieve drug induced remission. While this may not be achievable, it is currently my goal. That could be part of my failure to reach full acceptance. I am not yet ready to say that this is as good as it gets.

    There are a good many things that I keep doing or trying to do in spite of knowing I will suffer for it. The amount of work I am doing is wearing me down but I can’t figure out how to talk to my boss about reducing my hours. I love fly fishing but the streams are just hard. The fatigue is killing. I have a lot of trouble shortening my outings enough so I don’t pay for it hugely. Yes, I am resisting. I don’t want to learn to be sick. I want to learn to be well. But if I can’t achieve drug induced remission, I will get as close as possible and I will try to achieve the best quality of life that this disease will allow me.

    I haven’t read the whole book yet but what I have read has a lot of good advice for learning to let go of anger and a lot of other negative emotions that the pain and disability of this disease can cause. I am looking forward to using some of these ideas to help me cope.

  42. Connie says:

    Thank you for your reply Toni. I really cannot say enough about “How To Be Sick”. I definitely reap the benefits of your hard work daily as passages of the book put things in perspective for me. I thank you for your kind words and know that my husband does love me.

  43. April says:

    I’m (tongue in cheek here) almost lucky at the moment. Mine was just diagnosed with gout and his feet are hurting different but when he flares, it is a lot the same. He is starting to realize that forever is a LONG LONG time…

  44. April says:

    I know. When I first got on MTX, I thought… oh hey, even though my insurance won’t pay for this it isn’t that bad… then Enbrel… WOAH… and it seems to just get worse and worse the more meds you try.

  45. Kat Radi says:

    Thanks RA guy for this alerting me to this great inspiring book, and thanks Toni for having the dedication to write and share it.

    Unlike most people posting here, I have had RA with me all my life. I was diagnosed at 2 years old. I am now 36. I have never known my body to be healthy and pain free. I have “suffered” in the western sense of the word, quite a lot over the years, with a tremendous sense of loss and grief; over never being able to achieve things I wanted to. Or do the things I dream about – like go to Paris. (funny example – when I first started reading the book, I was thinking; at least she (Toni) went to Paris, I have never been, I could never save up enough money to get there, let alone stay there that long, let alone, oh and at least she is already happily married!! How will I ever find a partner who will put up with me like this???, AND she had a fulfilling career at least for a while??!!! blah blah blah….)(will reserve more comments for discussion on ENVY!)

    I was special. I grew up being “special”. I was treated differently, because of my disease, and yet I was ashamed of my disease. But what does a “special” kid grow up to be?? Not much, just another adult with chronic illness. When I was at school, I was the kid who was clever even though she had a disability…not bad! At university, I was someone who didn’t even qualify for any support. Now in the workforce, I am just the one who turns up to work even though I feel half dead, and become resentful if no one notices and angry if someone does…lol. I still fall into that trap of thinking I am different. I was well trained.

    Other diseases, flares and surgeries have also set me back mentally. After I had my hips replaced I imagined bush walks and disco dancing, instead the last 3 years have been very difficult with the onset of debilitating fatigue. Instead of bushwalking, I have to spend days looking at the bush out my window from my bed. This reality has been difficult to accept. I beat myself up and constantly tell myself I am just lazy, I am just addicted to bad tv. I don’t really want to do anything. I like being this way. In fact this is not true. But I waver.

    Another mystery health problem has kept me in bed a lot of this summer, (and I had such plans of things I was going to tend to in my garden!) and I have felt my thoughts becoming more and more resentful and negative. I have found it difficult to let go of my own expectations and learn to enjoy different things. One of my favourite things is feeling a cool breeze on my shoulders from my open window, or hearing a great radio documentary at 3am. The other night four wild wallabies were grazing on pears from my orchard. This is joy. It is difficult to explain this to others, and to live in this world of appreciating small things- when so often we are surrounded by the opposite.

    So I guess for me, realizing that life wasn’t going to be the way it used to be – I don’t have to be ashamed of my disease anymore. It just is. But it is not me.

  46. Lene says:

    RA’s been part of my life since I was 4, so #1 doesn’t really apply in that sense. However, every time I lose an ability or deteriorate, even if it’s temporary, I bang my head up against denial. And that means refusing to change the way I do things, causing more trouble and so forth in to never-ending spiral. Living with a chronic illness means doing this over and over again – the diagnosis is just practice for all the adapting you have to do later.

  47. Banana says:

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
    I was diagnosed at 20, but after maybe 3 years, I felt pretty good. We didn’t have to mess with my drugs too much either. So I made the most of the years where the disease was quiet and was able to travel and get through college/grad school. I *knew* I had these chronic illnesses, but I didn’t feel like they were serious because I could still manage to move on with my life.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
    I was diagnosed with Crohn’s while my RA was controlled (the doc was pretty sure I’d had it since around the same time I was diagnosed with RA), and I had to deal with that. My RA took a back seat, and really, I didn’t have enough of an understanding of the disease to realize that the fatigue and the tendon tears and constant back/shoulder issues was RA! So, yeah – that sounds very much like denial! Now the disease has become much more active and I’m realizing that I’ve had my head in the sand – I need to pay attention to the pain, medicate more to control things, and slow down. I am scared that my outlook has to change, but I also worry about limiting myself and missing opportunities to do amazing things. I’m still trying to find a balance.
    I’ve ordered the book but only read the sample so far – it sounds like the perfect book for working through some of this fear.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?
    Yes, constantly. But I also think it’s necessary to push the boundaries sometimes – but maybe not..? I think this is the thing I struggle with most of all. I’m just trying to learn to recognize how I feel, taking it day by day, hoping for the best (the miracle pill!).
    I have a very supportive husband and a 9-mo old baby (I flared after pregnancy). I really battle with the guilt – my husband does so much, and what impact will my health have on my kid? I don’t want her burdened with a ‘sick’ mom! But raising a kid, much like managing my health, is a marathon not a sprint, so I just take it day by day.

  48. Happy (@HappyMECFS) says:

    I suppose I’m one of the outliers, in that from the moment my GP told me he suspected ME/CFS, I didn’t experience any denial. I went online that night, read about it, saw that my chances of recovery were slim, and cried. But there was no part of me that said ‘This isn’t true. I’m not really sick’. I have some ideas of why that might be, related to previous experiences in my life, but I’ll have to write that up when I have more spoons. It probably fits better in the Broken Glass chapter anyway.

  49. Toni Bernhard says:

    Kat – I’m so glad to hear that my book has been helpful to you. You’ve had so much to adjust to with your health — one thing after another. I really admire how well you’ve done, especially how you’ve learned to appreciate the small things. I wrote a blog post for Psychology Today that was an extension of the isolation chapter in my book, about how I learned to enjoy solitude. It took several years…and I still have my bad days. I’ll put in the link in case you’d find it helpful:

    http://www.psychologytoday.com/blog/turning-straw-gold/201105/how-turn-loneliness-sweet-solitude

  50. Toni Bernhard says:

    Leslie — It’s a delicate balance to, on the one hand, accept where you are right now but, on the other hand, continue to aggressively seek treatment that could result in a remission. I don’t see a contradiction between the two. It seems to me that you are taking a realistic approach during this early stage of the illness where there’s a good possibility you could go into remission. I just hope you don’t push yourself too hard, meaning I hope you listen to your body!

  51. Toni Bernhard says:

    Lene – Your comment reminds me of what I say often: Being chronically ill can feel like a full-time job. We’re constantly having to adjust expectations. That, in itself, is exhausting.

  52. Toni Bernhard says:

    Banana – There’s such wisdom in your comment: “But raising a kid, much like managing my health, is a marathon not a sprint, so I just take it day by day.” Yes — day by day!

  53. Mary E Micari says:

    LOVING this book. I was terrified for you in the beginning. Blessings for getting this in print and RA GUY thanks for making space for this discussion here! So urgent!

    How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    It took me no time to know I had a chronic illness. Google searches well into the early morning where I put in each and ever symptom (fever, aches and swelling, horrible pain in joints, hot joints, rapid weight gain, High Blood Pressure out of NO where and a flu that would just not go away) resulted in RA coming up over and over like a flashing sign. It was no surprise when I got my diagnosis. I knew it was a chronic disease and accepted that. I have already gone through some really hard things (hit by a car at 14, dyslexia all my life, serious surgeries early) as well as watched many in my family go through similar things. I knew what it meant. It meant I would change…yet again. There was a part of me through the pain that was kind of glad in a way for the opportunity to change. To grow in the challenge. I am in the theater though, a performer and a singer and was terrified to lose my voice or my ability (which I have lost) to do my side job of hair and make up for films and TV.

    Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
    I did not. I do not. However, I do not believe in giving in to anything. I can do things. I do them as well as the day allows. In the beginning I was very scared and frustrated but NO not in denial. I got down to the business of surviving with this right away. Therapy helps…certainly to keep on this track. My husband not so much this terrifies him. I am the stronger one. My son…won’t discuss it. I know he is scared for me so I leave it. He kept wanting me to be the old me again but he has come to see that I am getting stronger.

    Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    Absolutely. However, I have stopped working out of the house and can govern my time and activities for the most part. I choose which ones to do. I am very lucky. However, NO ONE sees me wince or complain. NO ONE. I like it that way. We moved recently and I certainly did more than my share. It took me weeks to recover…almost two months but I did it and was proud of it. I like the challenge of normalcy. I strive for that always.

  54. Cindy Souza says:

    ■How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    I awoke one morning with the inability to move any part of my body. That was in 1995. Somewhere in my mind, there is a place that keeps holding on to the desire that one day, I will wake up and be the “old me” again. My heart knows that I will never be that person again, but my brain still visualizes that old way of life.

    ■Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?

    I did and still do go through the grieving process which includes denial. It seems like when I try to accept the illness in my life, the people around me appear to go through denial and insist that I can do the things that I know I can no longer do. It is a vicious circle.

    ■Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    Being the “go to” person in my family and circle of friends throughout my life, I continue to push myself. Life for me is hectic and chaotic and it should not be this way. These people come into my home, which was once a place to be envied, and it looks like a bomb went off in it now. One would think they would offer to come help me, instead they continue to ask if I can do this or do that for them. So, yes, even though I know I am doing more harm than good for myself and my illness, I continue to do for others while my own world is crashing down around me. I really need to change this aspect of my life.

  55. April says:

    Oh, I didn’t have even a moment of denial. When the doctor called me, it was vindication that I wasn’t a loony looking for attention… or a drama queen for taking an eternity to walk into the hotel from the parking lot at disney world.
    I remembered the hands of my aunts and great aunts and cried… but I at least knew I wasn’t making it all up.

  56. Dianna says:

    A 30% higher chance of dying from RA because of teaching?
    With all of the negatives that go along with the teaching profession, I would say this tops them!!
    I can’t begin to believe this is true.
    For your sake Joan, I certainly hope not!
    Hang in there!

  57. Dianna says:

    85% of people with RA are women.
    From what I have read, “Women get RA, while Men get Gout”!

    Nevertheless, they are both painful inflammatory conditions.

  58. Michele says:

    We started this practice several years ago. After living in the same house for 16 years we finally moved and it nearly put me in the hospital. Now, we live as if we are going to move and our last move was so much easier. We simply refuse to let “stuff” rule our lives.

  59. sherry says:

    I love this book, it is so me!When my husband came in from work last night I was reading it and was so excited to know someone else had made their bed their home. I don’t go any where any more that I can’t lay down! I started telling him about the passage where Tony walks into the room and you, crying said I’m sorry I’m sick, and he replied, crying, and I’m so sorry you’re sick. This same scene has played out so many times in our home almost exactly as you wrote it! The crying, then the laughing. I have Lupus, RA, PN, Sjogrens, Hashimotos w/nodules. When I ask my Rheumatologist whats causing this or that symptom, he just shakes his head. At firs I didn’t believe I really had RA, so he did a Anti-ccp(? )just to prove it to me. This test is specific to RA, if it’s positive, it’s positive! I’ve been ill 15 or so years, so have had time to accept, and learn to to live the life I have, not the one I had.

  60. Jenny says:

    1. How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?

    It took me about 6 months after I came down with the virus that I never recovered from before I accepted that my life had changed irreparably. I had a doctor diagnose me with chronic fatigue syndrome 4 months after the virus, but he didn’t explain it to me very well and insisted only on adjusting my antidepressants. I really thought an antidepressant would cure me, so it took me another 2 months before I did more research and realized that the “chronic” in chronic fatigue syndrome meant it wasn’t going away anytime soon.

    2. Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?

    Initially I had a short period of denial. When the first doctor said “Chronic Fatigue Syndrome” and another said “Fibromyalgia,” I decided that there had to be another answer. I couldn’t have these conditions that were not understood and had no clear treatment. I thought people like that were kind of crazy and couldn’t handle life. No, I was a smart, practical, and capable person that faced life head on. I did not have these amorphous illnesses that were thought to perhaps be psychological in nature. After I did more research and started reading actual patient stories, I realized that there were a lot of people just like me – in their 20s, Type A personalities, living life relatively healthy, and out of nowhere were struck down by CFS or Fibro. Not only that, but there were health professionals out there that didn’t believe CFS and Fibro were psychological in nature but actual physical ailments. I still get chills whenever I read a story almost identical to mine because it’s just more validation that what I’m going through is real. When I first read Toni’s story, tears streamed down my face because it was like reading my story, only she was able to express so many thoughts and emotions I had that I didn’t know how to explain.

    My friends and family had more drawn out periods of denial. My favorite example is the dietary changes I made. I have interstitial cystitis, a chronic bladder condition that is exacerbated my certain foods. I had to undergo an elimination diet to figure out what I was sensitive to and I also cut out gluten for GI issues. My stepfather thought my diet was just some strange affectation of mine. As much as I tried to explain to him how the foods you eat have a direct effect on your health, he always thought I was being ridiculous.

    Fortunately, my father is a doctor and he believed in CFS right away. My boyfriend did as well. When I asked him why it was so easy for him to believe and accept it, he said it’s because he watched it happen to me first hand. My mother and stepfather, however, were in denial for years. They kept thinking I just had not found the right doctor or the right treatment. They didn’t believe there was a condition that couldn’t be cured. They’re much better now, but still struggle at times to fully accept my reality as a mostly bed-bound person.

    3. Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

    Yes. I continued to work at a stressful job where once a month I would work 50-80 hrs in one week to close the fiscal month. I made it 10 months before I quit out of desperation to try resting to get better upon the recommendation of my father.

    I pushed myself when I exercised. I pushed myself at social events. I pushed myself to keep my home clean. I even bought tickets and attended a 3-day long outdoor music festival in Texas only 4 months into my illness. It was almost 100 degrees every day and we would spend 12 hours out there each day walking around this park listening to music. I felt awful the entire time, but I didn’t want to miss out on the experience so I went anyway. My personality pre-illness was such that I thought if you weren’t going all out, if it wasn’t almost painful, then it wasn’t worth it. It was like martyrdom. After I got sick, I had a difficult time accepting that those beliefs I had were myths and that whether or not I liked operating that way, my body could no longer take it.

  61. Elizabeth Bastos says:

    Toni, and everyone. First thank you for your community, this is the first place I have “joined.” I have spinal osteoarthritis, and TMJD in my jaw, and also arthritis there, too. Basically my face neck and upper back are in spasm, and pain. Chronic. Who likes that word? I knew I wasn’t getting better about a month ago. It took me a year to realize it though, I think I will always be “realizing” it. The life I thought I would lead as a mother, wife, and writer will not be what I might have imagined and I do not yet know how I will adjust. I am still adjusting, still angry, still not accepting, which is why your book and this community are such wonderful finds. I feel like I am an archeologist of my old life, finding things that remind me of the way things used to be, when I was in the pink of health. I found an old salsa CD of mine and cried. Or old pictures, Pre Chronic Illness. PCI. ICI. In Chronic Pain, is my new era.

    For a long time I “toughed it” and refused to take the medicines at the dosages my doctors recommended. I was like a teenager, with a curfew, no way was I going to every 8 hours take a muscle relaxant. I still struggle with that, I hate being in need of drugs. It makes me feel so enfeebled, unAmerican almost, that I can’t kick this, Ben Franklin it with pure moxie and determination. But I can’t, so. I stare at the bottle and pills and think – this cannot be my medicine closet? This cannot be! Rage!

    Changes like telling people closest to me what’s going on – that is a big one for me. I’m usually very stiff upper lip British in India still keeping at their tradition of tea in the tropical heat kind of person. And looking at me, you cannot tell. My illness is invisible. I walk, I talk, I carpool – but at a price that is high. I’ve started telling friends (all of whom are so full of possible cures, and ways that I should be thinking more positively, meaning to be helpful) that I am not getting better. That I might not get better. That I am trying to have a life anyway. Despite. Because of. I can’t deny that everything has changed and there is new map, and a new world, and it is very scary.

  62. April says:

    Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?
    – Deep Belly Breathing from Yoga class… It keeps the stress level down and keeps me centered.
    – the key “ball” (rubber bands wrapped around the top of the key) to make it easier to turn)
    – my spoon ring I got last summer to remind me to try to always have a spare “spoon” (hi spoonies)
    – my time… I take breaks, sometimes walk across the street at work to the meditation garden… I be gentle with myself… most of the time

    If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?
    – devastated. I knew what RA hands could look like. I was terrified even though I KNEW things were different now… even though I understood my outcome wasn’t what everyone else was sure it was.
    – the irony was, I was diagnosed in December 2010. I was signed up for the Austin Half Marathon the following February and to start Yoga class in January. I did both… and both really helped. Yoga helped teach me… the half taught me even when it hurts like hell, I can do it.

    We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

    – new ways to look at my own journey… new ways to help me cope… and ways to help others on their journey…

  63. Christina says:

    I too love the Rule of Thirds… it just makes it sound cooler somehow, this rationing of energy. It’s amazing how much I’ve had to downsize my activity level. These days I accomplish in an entire day, if I’m lucky, what I used to do on the fly outside of a full work day. Sometimes the thirds get divided up even more. I try not to get disappointed and just feel satisfied with what I managed to do. A big change for someone who used to be so outcome-oriented. Or maybe I still am outcome oriented, just on a smaller scale…

  64. Isabelle says:

    That’s a good idea RA Guy. I just find it hard to put it into practice. On days I feel good, I fly around getting stuff done as it’s rare I have good days. Then I pay for it later. I never seem to learn.

  65. Isabelle says:

    My ‘Paris’ was Tokyo. I went for work in 2002 and was visiting a university there and felt tired during the day – thought it was just jet lag. By the time I made it back to my hotel that evening I had terrible vertigo and an awful headache. An awful experience when one is at a busy subway station in Tokyo at the height of rush hour. I had to hold on to the wall to make it back to my hotel. I thought I had a bad flu and managed to drag myself thru my work days sleeping for 12 h each nite. I felt better the day I left Tokyo and then got sick again on the flights back. I tried going back to work and could not – doc kept saying I had the flu. On and on went the visits to the doctors specialists naturopaths etc. etc. It seems the meds I was taking for the RA for 3 years previously had resulted in me coming down with some virus or something that my body could not fight. I managed to drag myself into work p/t for a few years feeling so sick I would collapse each day after getting home and then finally having to face quitting work as it was just making me worse. I am still struggling with the many losses this situation has brought me. Thanks for writing this book Toni. It helps so much to know that what I have experienced is real – that it is not in my head and that it’s not that I am just not trying hard enough. It’s so easy to blame ourselves in all of this and not wonder what we did wrong what we could have done differently etc. I look forward to trying to implement some of these techniques into my own life to try and handle this situation better. Thanks for initiating this discussion RAGuy.

  66. Isabelle says:

    Hi Thrive with RA

    Do you still suffer from the flu like symptoms – nausea dizziness – along with the RA? Reading the stories here it seems like 2 others besides me have experienced the ongoing flu-like illness along with the arthritis. My docs had told this wasn’t part of RA but am now wondering if it is for some of us?

    Thanks for sharing.

  67. Isabelle says:

    Would it be because of the bugs one comes into contact with when one is in the classroom with a bunch of children and being on immunosuppressant meds makes one particularly vulnerable to those bugs?

    I am sorry you face this Joan but I have always said I’d trade a shorter quality life for a longer one wherein I was not happy. In deciding to try the anti-TNF meds I had to reach this conclusion. Otherwise I couldn’t bring myself to try them with all the nasty side effects they list.

    Best wishes to you.

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