Fear Factor

I was reading an article from The Mighty about guilt and chronic illness. You know what I mean…that niggling feeling you have about being sick. No, I’m not going to write about guilt, too (I’ve looked at those thoughts previously, here and here): I’m writing about fear.

Firstly, you need to know a little about my background, so the abridged version:

  • I was 40 before I heard about fibromyalgia.
  • Previously, I had worked in hotels, on cruise ships and in casinos.
  • At 34yo, I started a Bachelor of Laws while working, at the casino, full-time.
  • I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

I have just celebrated the 25th anniversary of my 21st birthday (yes, I’m 46 now) and, as my ankle and leg get better, I feel like I have a little more control (understanding?) over my illness.

119-fibro-fogSo, what am I going to do?

I have been sick (and not working) for 72 times longer than I was actually practicing law. I can truly say that I have forgotten more law than most of you will ever know (you know what I mean!) but I am scared $#!%less – anyone else feel the same? How are you dealing with it?

 

Feeling Debilitated? Me, too!

Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.

Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:

Overwhelmingly, the answer was DEBILITATION!

So, it was very timely that I read this post by The New Normal:

So Very Tired

I am so tired.

I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes.  But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.

I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.

Chronic Comic 155It’s not the same now, and I wish there were a better word for this kind of fatigue.  When I say I am tired now it means that I wake up exhausted.  I can sleep for eight hours straight and wake up and feel like I haven’t slept at all.  It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended.  It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.

I am tired to my core.  And I don’t know what to do to get through this.

I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold.  The cold passed, but here I am, swollen and tired and in pain.  About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do.  She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.

I called to make a follow-up appointment on day 7 because I still felt awful.  Pain and fatigue hadn’t really improved, despite the extra prednisone.  I went to see her yesterday, and she said, yes it looks like something is going on.  She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.

Hearing all that just made me more tired.  It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage.  It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen.  We were talking about progress.

But no. Here we are again. Going the opposite direction.  And I am so very tired, so very discouraged.  And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest.  But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.

In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs.  I know all of that, but today, and all the days lately, I feel defeated by this disease.

And I’m just tired.

We Cope, Not Hope (results)

Disease as an adverse interruption of life is the prevalent interpretation of chronic pain conditions. But there are different ways to cope with pain, and there are different ways to regulate emotions associated with chronic diseases. Because most patients with chronic conditions are unable to ‘solve’ our persisting pain by ourselves (in terms of recovery or repair) and to find distance to negative emotions associated with pain, we have to find strategies to adapt to a long-lasting course of illness.

We have to find ways to maintain physical, emotional and spiritual health in spite of often long-lasting courses. Thus, our coping with chronic pain is an ongoing process which includes appraisals of stress, cognitive, behavioural, and emotional coping responses, and subsequent reappraisals of stress.

One of the most frequently used concept on adaptation strategies for patients with chronic pain diseases differentiates active and passive coping:

  • Active coping (i.e., problem solving, including collecting information and refocusing on the problem, or regulation of emotion by focusing attention on the emotional response aroused by the stressor) is associated with less pain, less depression, less functional impairment, and higher general self-efficacy;
  • Passive coping (i.e., avoidance and escape) is correlated with reports of greater depression, greater pain and flare-up activity, greater functional impairment, and lower general self-efficacy.

Although the importance of decreasing maladaptive and encouraging adaptive coping responses is emphasized by innovative treatment programs for chronic pain (if you can get in!), one nevertheless has to ask which adaptive coping strategies were of relevance for the patients.

I asked the same question of you: Which of the following coping strategies best describes the way you cope with your chronic pain?

The answers (so you don’t have to return to the poll) were:

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medication, follow advice of medical practitioners, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day)

The study, which started all of this, had 579 participants – we had 239 (not too bad). The study also asked demographic type questions but I decided not to make it too long a poll so we could have more answers.

From highest reliance to lowest here are the results from both the study and our poll:

results

We (as a group) seem to be much more aggressive, active participants in the search for sufficient condition management.

coping

Most study patients tended to externalize the process of disease management, i.e., the chronic pain disease was regarded as an adverse interruption of life, and patients called experts for help (i.e., medical doctors or therapists), and followed their advice or relied on the effects of prescribed remedies, which alone is a rather passive strategy. However, if you add (internal) cognitive-behavioural changes (i.e., patients may change distinct aspects of their life, try to become more consciously, healthy, physically fit, use distinct diets etc) or try to think positive (resolve cumbering situations of past, realize shelved dreams and wishes etc.) – both are active strategies.

In face of an insufficient manageability of chronic pain, some patients may call upon ‘more powerful’ external others (i.e., Trust in Divine Help), because the conventional resources of help seem to be (subjectively) exhausted.

In general, both groups relied on external powerful sources to control their disease (i.e., Trust in Medical Help; Search for Information and Alternative Help), but also on internal powers and virtues (i.e., Conscious Way of Living; Positive Attitudes).

In contrast, Trust in Divine Help as an external transcendent source and Reappraisal: Illness as Chance as an internal (cognitive) strategy were valued moderately.

Escape from Illness (which is not regarded as an adaptive coping strategy) was highly associated with depressive disorders.

The researchers came to the conclusion that to restore a sense of self-control over pain as well as the conviction that you are not necessarily disabled by disease and that pain is not necessarily a sign of damage is a major task in patient care. Changing negative/maladaptive illness interpretations and depressive or avoidance coping by means of an intervention and encouraging social support by means of patient support groups may at least improve quality of life.

Apart from effective pain management, a comprehensive approach is needed which enhances the psycho-spiritual well-being, i.e. self-awareness, coping and adjusting effectively with stress, relationships, sense of faith, sense of empowerment and confidence, and living with meaning and hope.

Further studies are required (of course!), particularly longitudinal studies to measure changes in the weighting of adaptive coping strategies and interpretations of disease with respect to pain intensity, and comprehensive intervention programs.

lrg_Ornamental_Divider__Englische_Linie

F.Y.I. – The utilization of the different adaptive coping strategies did not significantly differ with respect to gender, while the educational level had a small impact on Trust in Medical Help, which was the highest in patients with a lower educational level. Age had a significant impact on Trust in Divine Help, Trust in Medical Help and Conscious Way of Living. The duration of the condition had no significant impact on the adaptive coping strategies.

An obvious result showed that patients from the outpatient clinic had significantly higher scores for Trust in Medical Help and Escape from Illness than patients from the rehabilitation clinic or patients attending the mind-body program, and were also in Search for Information and Alternative Help. This may indicate higher need for external help.

 

Coping vs Hoping

In response to a research study I found, I wanted to ask you guys the same question – to see if our results match the study. The answers may need explanation; and you will find then below the poll.

After we have answers, I will publish a precis of the research study as compared to our answers

  • Trust in Divine Help in response to disease addresses non-organized intrinsic religiosity as an external transcendent resource to cope (i.e., trust in a higher power which carries through; strong belief that God will help; faith is a strong hold, even in hard times; pray to become healthy again; live in accordance with religious convictions).
  • Trust in Medical Help addresses patients’ reliance on an external medical source of health control (i.e., trust in the therapeutic potentials of modern medicine, take prescribed medications, follows advice of health professionals, full confidence in doctors and therapists).
  • Search for Information and Alternative Help refers to external sources providing additional information or alternative help (i.e., thoroughly informed about disease; get thorough information how to become healthy again; find people who can help; search for alternative ways of healing).
  • Conscious Way of Living addresses cognitive and behavioural strategies in terms of internal powers and virtues (i.e., healthy diet; physical fitness; living consciously; keep away harmful influences; change life to get well).
  • Positive Attitudes refers to internal cognitive and behavioural strategies (i.e., realization of shelved dreams and wishes; resolving cumbering situations of the past; take life in own hands; doing all that what pleases; positive thinking; avoiding thinking at illness).
  • Reappraisal: Illness as Chance addresses a reappraisal attitude referring to cognitive processes of life reflection (i.e., reflect on what is essential in life; illness has meaning; illness as a chance for development; appreciation of life because of illness).
  • Escape from Illness (i.e., fear what illness will bring; would like to run away from illness; when I wake up, I don’t know how to face the day”

 

Attention Single, Divorced and /or Friendless

 

Firstly, some facts (this is not me feeling sorry for myself, just facts):

  • I am single (read divorced and/or friendless depending on your situation)
  • I am sick (with no cure on the immediate horizon)
  • I have only one friend who actually visits with me
  • I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed Socially.com offered a list of places to meet people

  • Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

  • Work

I am still unable to work

  • Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

  • Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

  • A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

  • A sports team or league

Are you kidding?

  • Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

  • Through your kids

Another moot point for me

  • Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

  • Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

  • At a party

Too much noise, too many people, just TOO!

  • An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

  • Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?

 

There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?

 

Embracing (and loving) my Bills

 

I LOVE paying bills! Am I nuts? Or what?

Unpaid bills stress me out big time BUT the relief and sense of satisfaction, when I press confirm on the keyboard and wait to receive my receipt number, leaves me feeling back in control of my life.

Are you seeing a continuing theme here?

I NEEDED to de-clutter my house to feel like I was gaining control over my life…

I LOVE paying my bills for the exact same reason…

Am I a control freak?


The phrase was first used in the late 1960s — an era when great stress was laid on the principle of ‘doing one’s own thing’ and letting others do the same.

Control freaks are often perfectionists, who believe if they are not in total control, they risk  exposing their own inner vulnerabilities. When a control freak’s pattern is broken, “the Controller is left with a terrible feeling of powerlessness … But feeling their pain and fear brings them back to themselves”.(Patricia Evans, Controlling People (Avon 2002) p. 129 and p. 274)

I know that I NEED to control my own environment (and I’m very lucky as I live alone and can do so) because I feel powerless against my Fibromyalgia. I take all the appropriate medication; I pace myself as applicable; I supplement my diet with numerous vitamins and minerals; I have embraced a multi-modal treatment plan; and I have all the tools in my toolbox to help control my pain YET, if my body decides it wants to FLARE, there is nothing I can do about the pain and fatigue, except to give in to it. So, of course, I feel powerless – don’t you?

Many control freaks (now using the term without any derogatory meanings) are Type A personalities. Hmm…many sufferers of FM are Type A personalities.

Coincidence?  Could FM be your body’s alert system to take it easy, to stop and smell the roses, to let the universe handle the world around you?

Are you a control freak?

 

Must-See Pioneering Research

I have a new theory so this is the beginning of my very un-scientific research…

Still Working, FibroMAGICians?

Feeling Tired? Fatigued? Spent?