Comments on: What do you do when you don’t like your choices?

By: Shauna

Shauna — Sun, 27 Jul 2008 00:26:12 +0000

Dear Rosalind,

As a long-time avid reader of your writings, I also find myself in a job ‘predicament’ at this spot in my life.

I am so glad and proud of this woman to say that the job I am now in, was given to me by a boss that knew of my physical limitations. All of them, everything. My Chronic pain and what causes it. Regarding my possible inability to perform one part of the job; she said, “We will work around that, and find a place for you that is good for you physically.” And she did! I could not have asked for anything else from her!!

Yet, as I continue my education, and know exactly what I am shooting for when I get to the point I am aiming for; I realize I may be putting my body through much more than I should be. I don’t like ‘shoulds’ in my vocabulary or thinking, but at times I know I need to think along those lines when it has to do directly with my body. I have found something odd, when I am working, my pain levels are either lower, or the distraction keeps my mind off the pain. On days off, my pain takes first seat. Anyway, I am just listening to some very special friends and am hearing their concern about me pushing myself too hard at work. Here I ask: should I change jobs to something even less stressful, or :cough cough: change my career as I am going to school so I can then finish that and get back into what I do now? Or stay exactly where I am and make it all work, see myself through the eyes of my boss who beleives in me and has done what we all wish of a potential boss: hire a person with a Chronic Illness knowing the whole story about that person and their CI?????

Take care Rosalind!!
Shauna

By: Mary

Mary — Tue, 22 Jul 2008 16:55:26 +0000

Actually-my massage therapist said that she thinks I need my Wonderwoman icon more than ever. Her rationale was that it takes a lot of energy to dodge arrows that are flying your direction and it takes a lot of energy to say “no, I can’t do that” But the person who is holding my Wonderwoman icon would not give it back. he doesn’t trust me to use super powers for good, as he has been part of putting me back together again when I over extend myself too often. So—I had to find a new icon on e-bay! mary

By: Rosalind

Rosalind — Tue, 22 Jul 2008 16:42:13 +0000

Hey there, Superwoman. Good to hear from you, Mary. I think it’s all a learning curve and the learning never stops. Just like for healthy people – this is our catalyst for learning who we are and what we’re capable of. I think you’re still Super/wonder woman – just perhaps doing less…

By: Mary

Mary — Mon, 21 Jul 2008 22:47:04 +0000

I think about this quite often and wonder if I would have lived differently if I had realized what a strain I was putting on my body. I think I have had fibromyalgia most of my life-but the accompanying myofascial pain came on full force & the FM bloomed after extreme stress at work. I wonder if I knew what the outcome was going to be if I would have not worked those 70 hour weeks for 12 years. But at the time it was my passion & very meaningful to me. I was Superwoman and I could do it all! Even when I moved from that job to another one with my illness in full bloom I was not very careful. I have spent the last 8 years pouring my heart and soul into my job. Initially I set up safeguards so that I could not work overtime too often. But I started letting those safeguards down & slipping back into the mode of too many hours. My husband began to say that he was concerned I would die prematurely, because I was going to have a heart attack.

Now I find myself once again at a crossroads. I am moving into a new arena that I am passionate about. But I am so tired of being a pioneer and getting shot at, that I am toning down my expectations of what I can develop. I need to learn to be content with impacting one life at a time. It does not matter whether I change the whole system this time around. That is a different thought for me. I am a change agent. But someone took my Superwoman cape from me and someone else took my Wonderwoman icon so I have to consider what I can accomplish without my supernatural powers. Mary

By: Ricky Buchanan

Ricky Buchanan — Mon, 21 Jul 2008 04:47:13 +0000

What helps me not focus on the loss – I focus on the stuff that I can still do, mostly. I have my online journal Journeying/Journalling, I design T-shirts and use Zazzle to sell them online at NoPity Shirts, I run the ATMac blog for assistive/adaptive technology for OS X users and I have my somewhat out of date personal website Not Done Living. I do bits of advocacy for people with chronic illness/disability – at the moment I’m working on access for people who are bedridden or housebound which is obviously very relevant to me! I write articles for various paper magazines and journals when I’m able to, usually about disability/illness and related topics. And I hug my cat a lot and listen to audio books .

By: Rosalind

Rosalind — Mon, 21 Jul 2008 00:35:34 +0000

Being able to grieve is critical to being “with” yourself in illness. Grieving should not be a chronic state, though, and it sounds as if you’ve found the balance, Ricky. In my book, Women Work and Autoimmune Disease: Keep Working Girlfriend! I’ve identified the stages of living with illness and grief is one we go back to periodically. It sounds as if you’ve figure out how to do this and live your life. What do you think helps you stay busy and not just focus on the loss?

By: Ricky Buchanan

Ricky Buchanan — Sun, 20 Jul 2008 04:14:09 +0000

I was 19 and still at university when I got severely ill and although (after 4 extra years) I eventually got my degree it was in a field (AI research) which is profoundly inappropriate for somebody with chronic illness – it moves even faster than the software engineering that Anne mentioned. My degree was out of date and virtually useless before I ever saw it… and although I have these professional level qualifications I’ve never been able to work because I was so ill by the time I finished studying – I’m 33 now.

Sometimes I just let myself *be* depressed about this stuff. I don’t think it’s wrong or silly that we feel down at times for stuff which is genuinely upsetting. I sure don’t let myself do this all the time, I’m too busy with all the things that I can do, but sometimes it’s necessary to grieve for what might have been or what all my friends are achieving that I can’t.

Ricky

By: Rosalind

Rosalind — Sat, 19 Jul 2008 16:21:44 +0000

Anne – You’re smart to be looking ahead. Smarter than I ever was when I was in the position. Realizing that there could always be, but if, and that it’s about what is true for you now. Health issues have a way of cropping up on us and paying attention, thinking strategically, will help you avoid a crisis. My Working With Chronic Illness Workbook has several good assessment tools and information that will help you prepare. Rosalind

By: Rosalind

Rosalind — Sat, 19 Jul 2008 16:17:14 +0000

Sandra – Listening to your quest , life coaches/self help books , I wonder if it’s not more about looking at what “settling” might mean to you? Maybe the journey will rest on finding happiness and creative juice from doing what you can do? It sounds as if you’ve make lemonade by developing your practical muscles. Good for you! Rosalind

By: Anne

Anne — Sat, 19 Jul 2008 12:53:23 +0000

This topic could not be more timely for me. I am in a situation now where I think my health issues seriously affected how effective I could be, and by extension, is jeopardizing my job. The software indusry is inherently rapid and chaotic, and those without health issues find it extremely difficult at times, especially during a release. However, they also don’t need to be going to doctors appts or finding time to stretch, take care of daily maintenance that is required for living with a neuromuscular condition. A co-worker mentioned that she had been running but “who had time for that” with what is needed at work? It made me think that, well, I have to have time for exercise if I don’t want my muscles to tighten further or collapse from fatigue. As it is, I am functioning to commute and do the daily things that need doing. Nevermind expanding my skills or engaging in creative pursuits.

I do think often about the success I’d be if I did not have the burden of health issues to contend with. That aspect alone colors my thinking and my identity, and how I relate with people. In this particular job, with all of that removed, I’d be free to be the top performer I think I could have been. Or, better yet, my choices to do something else would not be based on health but on interests.

It is becoming obvious that I need to make major changes. And it is also clear now, more than before, that I have consider my health in those choices.