It has been a long time since my last post and a lot has happened since now and then. You will note that my blog is no longer called Curing Fibromyalgia but is now Living with Fibromyalgia and Chronic Fatigue.
The pain and fatigue that started developing in March of 2013 continued to kick my butt. I got more and more tired, the pain became more and more debilitating and I hit some emotional all time lows. I developed a heart arrhythmia that had me very frightened and left me worried what my future held.
I went through a lot of tests: more blood tests, a lot of heart tests, x-rays, ultrasounds, specialist appointments.
Pretty much it all came down to nothing... well not nothing... pretty much we have added a diagnosis of Chronic Fatigue Syndrome to the already diagnosed Fibromyalgia.
It was a pretty hard hit and I needed to sit back and lick my wounds a little and try to deal with the additional emotional fall out that followed. On top of it all, my amazing doctor, Dr. Lassila switched clinics. So I also felt like I had lost my biggest helper in dealing with this illness.
But nothing keeps me down for long, and as with everything my need for education increased.
I attempted some behavioural therapy but it wasn't a great fit so I only attended a couple of sessions. I joined an online support group called MD Junction which I continue to visit as a way to educate myself and learn from others travelling the same path.
While cruising some of the posts on MDJunction I came upon the following post (some of the text has been eliminated for space but you can find the full article at http://www.mdjunction.com/forums/chronic-fatigue-syndrome-discussions/general-support/10898349-how-the-a-swear-word-is-not-giving-up#10900626):
Acceptance for Living With Fibromyalgia
How Acceptance Can Help With Managing Your Illness
By Adrienne Dellwo, About.com Guide
A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about.
When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died.
The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up", but acceptance actually is a means of looking at your situation realistically so you can set reachable goals.
The physician-trusted website UpToDate examines the need for acceptance in people living with FM. An excerpt from UpToDate:
"Acceptance of chronic pain is a coping strategy that includes both direct action and passive components that may be particularly helpful to patients with FM. This strategy involves (a) acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain; (b) acceptance of the need to shift one's attention from pain to non-pain aspects of life; and (c) such acceptance does not signify personal failure.
"Indeed, acceptance of persistent pain may be necessary for individuals to stop searching for treatments that provide complete relief of pain and begin to adopt changes in their behavior that may help them to better manage persistent pain and improve their quality of life."
Working Toward Acceptance
"Acceptance that it is unlikely that medical/behavioral treatments will completely eliminate one's pain."
You might ask, "Isn't that pessimistic?" Sadly, no -- it's realistic. So far, we don't have treatments that completely eliminate fibromyalgia pain, and no existing treatment works for everyone. It's likely that those of us with FM will have to live with some degree of pain, possibly for the rest of our lives. That doesn't mean that we have to accept living with severe pain. Instead, it means that we shouldn't expect any single treatment to alleviate all of our pain and other symptoms.
A more realistic goal is to find a combination of treatments that, together, lessen your symptoms and help you increase your functionality and quality of life.
It may be disheartening to think about living with pain forever. After the kind of pain you've experienced, though, think what a difference it would be to just have mild pain. Once you stop expecting the next treatment to be "the answer", you can start being happy about making small improvements, one at a time, that eventually add up to making you feel a lot better.
"Acceptance of the need to shift one's attention from pain to non-pain aspects of life."
No doubt, this one is hard. FM pain can demand your attention and, especially when combined with fibro fog, can make it hard to concentrate on anything else.
Things that can help distract you from pain include video games, hobbies/arts and crafts, reading (when fibro fog is bad, try a magazine or short stories), or anything else that you can enjoy without making yourself feel worse. The more your brain is engaged with what it's doing, the more successful you're likely to be, so TV and movies may not be very effective.
The quote above talks about acceptance versus catastrophizing. Catastrophizing is a distorted belief that things are worse than they are, or that the situation is hopeless. People who catastrophize may feel like they'll never get better, that no treatment will ever be effective. Research demonstrates that people who accept pain do better than those who catastrophize.
"Such acceptance does not signify personal failure."
It's important to remember that acceptance doesn't mean giving in to your illness, nor does modifying your life because of it.
For example, when I was diagnosed with FM, I was determined to keep it from changing my life. I continued working at a very stressful full-time job that kept me in a near-constant flare. My life consisted of working and trying to recover from work -- which meant laying on the couch, on pain killers and still in agony. Once I accepted that I had to make some changes and manage my FM instead of fighting against it, I was able to make the changes that have allowed me to improve. I left my job, and that felt like failure. However, my decision allowed me to be more successful as a wife, mother, friend, and overall person. I also recovered to the point that I could work from home.
And this is where I currently reside. I have accepted that I am ill... there is just no denying it. I am, however, still in the decision making part of the process.
I am still working full-time; which means my evenings and weekends are usually a write-off as I lie on the couch trying to recover from work and building up my energy to work another week.
There are a few things that are keeping me from making the decision to quit working altogether or to go to part time work. The most obvious of this is financial... it is very difficult to give up that pay cheque; especially when my family relies on it so much. Coupled with that is finding someone at work that can take over the tasks that I would no longer be able to do. And that will be a discussion between me and my boss and co-workers when I am ready to go down that road.
For now, I'm learning to say no to things I'm just not capable of doing. Getting my much needed rest when I can. Building up energy so I can continue to enjoy things like family gatherings and outings with friends.
I have found Dr. Lassila again and we are working on lessening my symptoms... with some success!
So now that I have come to the final stage of grief... acceptance... I can begin to feel better.
So future blogs will contain some of the things I'm doing to feel better... I will share my successes and my failures. I started this blog in order to educate and help people on their journey and I hope that I can continue to do so.
Thanks for taking the time to read this rather long blog... and thanks for following.
Brightest Blessings!!
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