My Story: A Prisoner of Hope

My Story: A Prisoner of Hope

by Krissy Anderson

It is Sunday. I have a lot of pain today. Yes, in my body, but much more in my heart. I have a message, a mission and a corner I must turn.

How many of us who suffer with chronic pain and disease, and who have had to stop working, still carry the hope that one day we will be able to work at our careers again?

The Attitude: I Can Take on the World

I had this “attitude” when I was in business. My uncle called me a Rhinoceros (referring to the book that talks about business people who dive hard into big stuff and come out successful). I was thrilled with every client I had, thrilled with every project I did, and even though I never submitted my work for awards, some of my clients did, and I have a stack of national and international awards. My work was the ride of a lifetime. And perhaps one of the most wonderful things I had in my back pocket was my life plan. It didn’t include chronic illness and pain, it included that I would retire at 45, travel the world, do mission work and write books and articles about it, while working as a freelance journalist.

The best part of my ride was raising my kids during this same timeframe. I took them traveling, had my office in my home, and when I wasn’t traveling for business I was home when they got off the school bus. We had fun, grew together and I am so darned proud of them now for the wonderful, kind and upstanding adults they have become. Something went right. Love, happiness and enough pause in our lives to take in the earth and not rush. Life was good.

Still Grieving the Loss of My Career

Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

My pain started coming on when I was in my 30’s and working hard. I tried to ignore it, but I was also getting chronic infections and some loss of mobility. After a great deal of doctoring, questions and not many answers, I was finally diagnosed with RA and Fibromyalgia. The Mayo Clinic said I had the worst case of Fibro they had seen yet, and I was one of the first to be put on disability in the country. As time has progressed, my illness has worsened, with CFS and other things that go with these diseases. My work just kept slowing over the years, and so did I.

There’s a colorful, illuminated corner in my brain that tightly and unrelentingly holds the very thought of hope for another career: the thrill of doing the work, the fantasy of sitting at the proverbial drawing board and the excitement of traveling from big city to big city presenting, selling and making clients feel happy and safe.

I still keep huge files of all the new marketing elements brought on by new technologies in a folder on my computer. I can’t seem to just clean house quite yet and let go of my career.

And yet I must.

New Questions for Me – New Answers for me: It’s Time to Move On

I pose the question, is it good to have hope, or does this mean I haven’t accepted my illness and my limitations after all these years?

I need to be reminded now and then why I don’t work anymore. I am simply not able to handle stress, pressure, big-thinking stuff and deadlines. But by being a prisoner of hope, I have been moving forward with ideas, my typical lists, writings, project sheets and more, only to have gotten excited about a potential project and forgetting my limitations.

Now I feel sick. The last of my big projects just isn’t going to happen.

The Problem: I Still Have that Attitude

This morning I woke with panic, thundering heart palpitations, tears flowing and scared out of my mind. I got a migraine, my pain level soared and I was a useless wet rag. I turned to the most recent monkey on my back and sobbed, “Help me, I can’t do this!”

“This” refers to a big project I assigned myself to a couple of weeks ago in which I have made big promises to new friends, began a timeline, started to write an outline of how we will assign leadership positions to people to handle the logistics, who we’ll need for what duties, what marketing elements are involved and how we will address and implement them, strong ideas for names and tags that draw the right attention, and more and more and more. My attitude has been, “I can do this — with lots of help — we can succeed at this. No problem.”

Except there is a problem. I can’t do this. I am ill and I can’t even manage my home. I am moving in a few weeks, my daughter is in a high-risk pregnancy and I need to fly home in May for an unknown (yet breathtakingly exciting time).

The fear just broke me today. It’s not the fear of failure or the fear of success, rather it’s the fear of knowing I’m not right for this job anymore.

What illness and medications do to the mind is daunting, and I need to remind myself that I am not the person I used to be.

I’m not and may never be again.

Krissy Anderson is a freelance writer and former owner of a marketing communications agency. She has been published in 17 languages and was a spokesperson in the computer industry during the boom period in the 1980’s and 90’s. She suffers from RA, ME/CFS, Migraine, Lupus and orthostatic intolerance.

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Sandy…I think we all work hard to keep our hope of getting better treatment to manage our pain, and I think it’s important. It’s so difficult and lots of things aren’t within our control regarding it…but we keep trying because using medications is appropriate treatment, and WE’RE important and deserve it. Plus we’re paying for good care, not bad care! Accepting that we have limits and we need help is part of keeping our hope, I think. I can’t imagine how hard it must be to have a child who has only known the mom who doesn’t function like other moms. Kids so much want to be and have “the norm” in their lives. Even before my life did a 180 degree spin, I had injured my knee bowling and had a cast from groin to ankle. My oldest was in first grade and I was room mother and planned to go and help serve the kids at their party. She kept asking me what I was going to wear and getting very specific, and not happy when I said I’d have to wear a skirt. Come to find out, she wanted me in slacks, to totally cover my cast and, her words, “to walk like you used to”! I was floored and still remember how happy she was that I dug out old sloppy slacks to cover up. The limp was another issue but she mostly ignored me, so she survived. Looking back now, I see the humor in It…but as far as teenagers like you have go…their judging of our inadequacies is anything but humorous. I’m sorry you have this extra burden and that she does too. My youngest was stuck at home with me at 15 years of age, during the summer I had my double whammy of a back surgery and a repeat two weeks later due to major complications. ( My doctor said the second myeogram was five times worse than before surgery and the first one was awful…so you can figure what I was like after the number two operation). School was just out for the summer and everyone else was away at work except the two of us. My daughter kept getting more and more short tempered and snippy and seemed mad at everyone. One day I realized I was depending one her a lot, and so were my husband and other daughter when they breezed in tired from work. Since she couldn’t drive, she was a captive in the house with me all day. One day I called her in to my room and told her I thought this all really sucked…for me and for her. She looked at me and actually sit on the bed instead of being ready to flee, for a change . So I told her to repeat what I’d said only leave me out of it…just say it for herself. She did, and I said now once again only louder say,…mom, this really sucks…then say “because I… Read more »

Krissy…I really do understand how you can need time to mend and take extra good care of yourself. Even my work at these comments here takes its toll! Typing is hard, since ten minutes looking at certain angles brings on an instant headache. You write so well, and you’ve done such a spectacular job for us all…I think there’s no doubt you deserve some true down time…not the enforced kind, but rather just lounging guilt free and relaxing and eating Bon-bond, if that’s what sounds good! If we don’t take care of ourselves first, were really can’t take care of anyone. So get to it and enjoy…no apologies necessary. Hope it is a healing time. I’ll pray for that.

Sandy Auriene Sullivan
Doug, early on I too worked hard for the family business starting at age 10. We owned a restaurant that was very popular with local businesses for lunch crowd. We were also on the beach so every chance, every break from school saw me on roller skates delivering lunches all over the area. That I would make nearly 100$ in tips over the entire summer break. [all 3 mos] and for a 10, 11, 12, 13yr old? That was nice cash and it was only a few hours of work a day so that the rest of my time could be spent surfing. My activity level was always high. Learned to ride motor bikes, still enjoy them but need to ‘relearn’ with proper training for a license – it’s a goal. One I put to the side for many years now. However, now that my youngest is nearing 13? The idea of being able to ride is becoming more practical with each passing year. Except for this failing body. I had teen scoliosis that eventually cleared up but has since returned since the entire left side of my body that relies on my right for balance, carrying items etc. My left side has atrophied a great deal. Even in my face. Neurologists believes the primary problem there is the lumbosacral nerve; which nothing can be done for until it shows up compressed on an MRI [I get compression there which causes paralysis but by the time I realize that I am losing all control over my left leg predominantly; the nerve is no longer compressed and slowly the feeling and use of even if limited of the left leg – foot and let’s honor the toes here; without them working it’s really hard to walk in any kind of shoes.] I enjoy riding horses and good at it. Sadly when one horse I was on decided paddock walking just wasn’t his day and he wanted back to the barn? He did everything he could to get me off his back. He wasn’t able to throw me; however in my frustration I forgot about physics and pulled the reigns so close to behind his ears – oh he stopped – I didn’t. Flying over the top, landing flat out; winded, fracturing my skull on my left shoulder. To this day the area swells and some injections help keep the area less tender. I know how lucky I was landing on my chin like that could have broken my neck instead. Still I was working and active. Then at 25 a flu nearly killed me and jacked up my immune system. Would really love to know what it was; my doctor in Australia said he hadnt seen that kind of flu anywhere outside of China. That was 1996. That’s when fatigue hit. When the dx of CFIDS was given to me. [any flu that nearly kills an otherwise healthy 25yr old? Is not run of the mill] Shortly after moving back to… Read more »
Sandy Auriene Sullivan

It is good to have hope. It is. I’ve gone through the stages of grief for my old self and acceptance is hard. Some days I’ve accepted it other days? My acceptance = letting go – of life. And that’s not a great strategy either.

I just want to be managed, to stabilize. It’s always been my goal despite being on disability that if I can just-get-managed [so the swings the ups and downs are more ‘flat lined’] if I could just feel a little better then I can start the road back to being productive.

My disability doesn’t pay the rent. If I wasn’t with family and slightly unconventional living situation; I dunno where my youngest and I would be at. My sons certainly aren’t able to take me on.

If I can only get managed….. but they keep changing the rules, they keep moving the goal posts and they keep me on the brink; not so well managed.

But IF i could get managed properly – just a bit better; then maybe I could work again, feel productive again – work 20hrs a week and have more independence too.

IF I could get managed…..

Thank you all for the nice comments. I did find a purpose in advocating for pain patients, but I got in too deeply, thinking I could do things like I used to. It burned me out. I’m not leaving the pain community; I am a part of it now. I just have to take time to take care of myself and be as healthy as I can for my family. I will continue to research, write and stay involved with my pain friends — we need each other!

I agree Kim, advocating for people with chronic diseases has filled and empty void. I too had to retire at 47. Thinking that I had at least another 15 years to follow my dream of opening my own pub/restaurant by the time I turned 50, those dreams where crushed. It only took me 2 years to start speaking out towards the miss treatment of chronic illness and now it helps me every day. I do still cook at home and my wife loves the fact that she has her own personal Chef, and we love to entertain when I feel up to it, I do still miss the restaurant.
Krissy, it’s inspiration like yours and everyone else that keep me keeping on. Last night I found myself writing down some of my special recipes, I think I’m going to try my have at writing a cook book.

Krissy, You have actually made me cry. I wish I had not had to retire at 47 years of age after spending the previous thirty years getting to exactly where I wanted to be. I did every bit of it on my own! It’s hard to walk away from something you were meant to do.

I am sorry for you loss as well as Anne’s and Chrystal’s. But I do agree with Chrystal Weaver. I have found another calling in advocating for chronic pain patients.

Doug…you have really had many life experiences! And unfortunately, some of them were ones no one would vote for! The injuries you sustained are really tough ones, worse in a way than the normal wear and tear of life or a gradual deterioration because of all the trauma to the connecting parts. I don’t have a pup, but I understand the recliner-and-TV life..and it’s hard when you’ve always been active. I think one big change for me is not getting all the affirmation, and as you said…gratitude…from others, because our lives are so narrow now and we don’t have a service oriented job. Self affirmation is new to most of us but it does help, and all of us are great people, even heroes in a way. We endure, we cope, we brighten other people’s lives when we can, we laugh, we see a new day, we plan…mostly what to do next for our pain, but hey it’s still planning, and we take care of someone really special…ourselves! That’s what really counts! I agree these articles and comments can help in a lot of ways…and there is always some one new to wish well or pray for, or someone to teach us, or someone to cry with us, and someone who knows pain… whose story says you’re not alone! I’m glad you find it supportive and I’m glad you told your story too. It’s not a meal and not a car fixed…but I appreciated it and I’m grateful you took the time and the energy (in pain) to write it. That’s a big accomplishment!

I wish you well krissy, and not to fret over what happened…I know, easier said than done. But you did what you were always able to do in the past…you got this, no problem (but this time you probably thought you’d just take it a little slower, but that stress is a bugger for sure). I too can’t get used to no star being out of reach. For me, one of the hardest things now is being invisible. I still have the same thoughts, visions, & skillset that way (not too much else)..people used to listen, I was a leader. Now I’m invisible in a group of invisible people…double invisible. Woman of the year was a step away, now not even a blip on the radar.. but I’m still in here..just as you are in there, but with complications : / I had a good cry with you Krissy, you will be missed but always welcomed. Hoping all goes well with your daughter & grandbaby. Hope or denial, the heart still keeps us trying for our long lost love…helping. xo

Krissy FANTASTIC piece! It is very hard to be a prisoner of hope. You are damned if you hope and you are damned if you don’t. It is the proverbial catch 22. The only thing that can be done when we are in a situation where our bodies betray us, we must find something that interests us but allows us to work only when we feel up to it. An hour today, skip the next day, put in an hour or two the following day. We all have talents and dreams that don’t need to be given up completely because of our illness. Our path to using our talents and reaching for our dreams just may look like a zigzag path and not a neat progressive upward line. But that is OK. We still have value. And we can still contribute.

I have found value by coming alongside newly diagnosed people with CRPS, ready with a listening ear and some encouragement. I’m active in advocating to maintain our access to medically necessary opiate based pain medication. Doing those two things help me even though they are a world away from my chosen career as a CPA.

We certainly need people with your skill set and expertise involved in our fight.

Anne, I miss it too…yet I’m still sort of in nursing. Just private duty for myself as the patient! A hard job with few benefits and bad hours, I might add!! Sometimes our background helps, I suppose. Yet, often it makes it harder to see how care should be…and could be ….for others and ourselves.

It’s wonderful people like you and these commenting readers that grieve the most over productivity loss.
I never thought about it until reading this…..
Around me…my grandparents….grown men…all begged and howl to get on disability and never have to work again…
Please know that people like you at least got out there and LIVED.
You did great things and achieved excellence.
I’m not in pain now…but it’s coming…years down the road…I’m sure.

I have felt this way so many times. Salary aside, just to be a contributing member of society again would be amazing. I miss being a nurse. I loved it.

Krissy…you’ve succeeded again in addressing what many of us have faced…and are still facing. It’s tough! And I think there are layers of acceptance, too. I have wondered myself about how hope fits with acceptance, or if it doesn’t! If a football player becomes paralyzed and is told he’ll never walk again, yet he thinks yes, I will…and he does…people say it was his positive attitude, his will to walk that helped him achieve it. Yet take the same player, the same injury, the same diagnosis, and the same positive attitude and will who DOESN’T walk again, and people say he was in denial and just wasn’t ready to accept his future!! I suppose hope can at some point turn into denial. Yet giving that hope up isn’t quite the answer we want. Maybe we must reevaluate our goals, changing the focus of our hope when we are faced with the inability to work at and achieve our previous life. The joy you had was, I’m guessing, from being able to use your many talents for a purpose. And that goal may still be achievable. You obviously can still write very well, and you still truly help people. Plus, you have a wonderful personal event coming up and a new “client” to take on! Facing the uncontrollable goal of working in a fast paced, demanding role is one of the hardest things I had to do. Giving up a business I was told was the best idea seen in the field ever, and so needed, was like a death for me. That was more years ago than I’d like to admit, and I still have some of my marketing information and my logo! It’s part of my history and someday I may throw it out, or my children will see it and remember that part of my life. I suppose what I’m saying is that we lose many things due to pain…but giving in to the reality of our new life isn’t the same as giving up. One day, I realized going back to bed seemed like a failure for me. It was something I had done more and more lately. So I would struggle all day to stay upright…yet end up accomplishing nothing except having more pain and exhaustion. Then I had one of those ah-haa moments and realized giving in to my need would not be a failure and it wouldn’t be giving up. It would merely be taking care of myself and living the reality of my life. That’s hard with chronic pain, because our reality stinks! But sometimes letting go is one of the best ways to care for ourselves. And it’s worth it in the long run, because the results of taking on more than we physically can do are monumental, and often keep us from enjoying what we can still have in life. Lots of little accomplishment can be as fulling and much less draining for me.

Hang in there Krissy, your story brought tears to me as I face the same thing. I also was an over-achiever, an athlete and my way of life was to push myself to get better and do more. I find it hard to stop but I have to listen to what my body tells me or I’m face more pain and worse problems that last longer. It’s a hard lesson to learn. I totally empathize and wish you the best going forward.

Your writing could have been done by myself. In fact I sat here crying reading it thinking omg, it’s not just me. Losing my ability to work was so devastating .I tried everything under the sun and had hopes but it never happened. It’s only been 4 years but seems like a lifetime. The depression set in worse and I feel like I am not good for anything. My house is never clean anymore because I can’t stand up long enough or move enough to do anything. But most of all I do miss work and feel grateful that I at least made it to 59 before being forced into retirement. Now my days consist of dreaming about better times and hoping for miracles among the tears

I totally relate and even though I am 63 it has been very upsetting and depressing for me to have to retire and not be able to work due to my chronic pain. It just adds to the depression and hopeless feeleing. Your article was very well said.

Thank you for your story Krissy. It’s a biography of so many of us who only wish that we could be the human beings we once were. Our lives have become as you said,”a prisoner of our medications and pain”. Everything I see either on TV or on the street makes me long for the life I once lived. I grew up on a good size farm in the Midwest. From the time I could reach the peddles on the farm equipment I was in the fields working the ground for crops. We grew everything from corn to hay and I started throwing 50 to 70 lb hay bails at the tender age of 10. My dad started paying me $10 a week and by the time I was old enough to drive he was giving me $40 a week and he bought me my first car so I could come home after school to start working right away. At the tender age of 18, I realized that farming wasn’t for me. Even though I still helped with planting and harvesting, I discovered that I had mechanical talents that were in high demand. I went to work as a tool maker in a machine shop and started going to college, majoring in mechanical engineering. My first injury was at home when I was changing a universal joint on my car. I had my car backed up on ramps but forgot to block the front tires. When I broke the drive shafts loose the car rolled down the ramps dragging me with it. When the weight of the car landed on my chest, it immediately took the air from my lungs. I was very lucky because my cousin was in the shop with me and lifted the car off my chest. I broke 6 ribs and injured my back. My next injury, I was working as a maintenance man for a industrial welding shop. I was in a forklift safty basket about 18 feet in the air working on an electrical bus bar. Using my meter to check to see if the power was off I mistakenly bumped against the wrong wire and got hit with 440 volts of electricity. When it through me backward it tossed me right out of the basket. I landed 18 feet below on to a dumpster, fracturing 5 vertebrae in my lower back. After having 6 months for my bones to heal and going through another year of physical therapy, I returned to the workforce with a vengeance, but I had quit college and decided to change careers. I became a mechanic and really thought I found my true calling. The next 25 years I spent working on cars and trucks and loved every single minute of it. I didn’t realize the damage is was doing to my body with all the lifting and bending over but old injuries eventually came back to haunt me. So now I had to give this job up. Me… Read more »