IS FIBROMYALGIA THE END OF LIFE AS WE KNOW IT? PART 3

IS FIBROMYALGIA THE END OF LIFE AS WE KNOW IT? PART 3

Three Ways To Live A Life Of Fibromyalgia With Meaning, Joy And Hope

This is the third article on coping with fibromyalgia where I have asked the question “Is fibromyalgia the end of life as we know it?” The answer is yes, your old life is over. Click on Is Fibromyalgia The End Of Life As We Know it Part One for the first article in this series  and click on Is Fibromyalgia The End Of Life As We Know It Part Two

The new life, the life with fibromyalgia can still have meaning, joy and hope. They key to this new life filled with fibromyalgia is to make adjustments and learn what is possible with an invisible chronic illness.

In the past two articles we learned the need to let go of the guilt we feel for not being able to do what we once did. We covered, letting go of the past and managing our expectations. We also discussed knowing our limitations and making allowances for what we can no longer do. This third installment is much more positive because we will dwell on improving our fibro ridden life.

Let’s look at three ways on how we can live a life of meaning, joy and hope.

1. Reinvent Yourself

For most people, the onset of fibromyalgia will turn your life into a chaotic mess dealing with all the symptoms that come with the disease. Generally, you cannot do the things you used to do before fibromyalgia became your chronic companion.

For me, I spent three or four years looking for a diagnosis and a treatment plan. Then I had to get used to it all. Even with a treatment plan, including pain management I realized I couldn’t go back to what I was doing prior to my illness. If I was going to have any sense of meaning in my life and any chance of joy or hope, I would need to reinvent myself.

It is hard to admit the life you once knew is gone for good. With the life sucking chronic pain, pulling the lifeblood out of me, I could no longer do what I used to, so making a long story short I got into writing. So now I am a blogger and a writer, which is very flexible and give my life meaning. Especially since most of what I blog about is fibromyalgia and Christian topics.

As luck would have it, I used to write in the distant past. I enjoyed it and even did some professional technical writing for a while. With my laptop, I can write while resting in my recliner. With the laptop resting on my lap, I can create an article for a blog post or I can work on my novel or create a new short story. This reinvented life is as flexible as my new life with fibro demands.

I don’t know what will work for you. That is something you will need to decide. If you’re lucky, you may still be able to do what you did before the onset of chronic pain, you may just need more flexibility.

fibro_end_of_life_part3With my reinvented self I do not have to worry about going to an office or punching a time card. I can write between naps. It gives me a purpose. I don’t know about you, but I cannot live a life without any sort of purpose and meaning.

I’ve had fibromyalgia for more than thirty years, although it wasn’t properly diagnosed for more than eleven years. I’ve had time to figure out this important step. There was a period of about four years where my time was occupied by doctor visits, sleeping, and watching TV because I couldn’t concentrate on anything else.

I still have episodes like this. But when I am up to it, I have a meaningful activity that gives me a sense of purpose. What new or modified activities can you think of that would give your life meaning and a sense of purpose. Don’t worry if the answers don’t come right away. But if you keep at it, you will figure out a purpose driven activity for the new you.

2. Manage Expectations

We touched on it previously in this series of articles, but I feel it is of such importance that it is worth touching on again and that is managing your expectations of what you can or cannot do.

I don’t know why, but there is almost always guilt associated with saying to yourself or others that you cannot do something you once found common place. Since I touched on guilt previously, I’ll just suggest this little nugget of insight about dealing with the expectations of what you can no longer do.

Instead of saying “I can no longer do that” reply by saying “while I can no longer do that, I can do this . . .” It sounds more positive and positive self talk is very important.

When your constant companion is chronic pain, fatigue and the sensations of an achy flu all over your body, sucking the life out of you, it is important to avoid guilt whenever and however you can. I am not talking about the guilt of sinning. I am talking about the unnecessary guilt we give ourselves for failure to live up to our own and others expectations of ourselves. The third thing we can do to make our new life as a fibromite better, is to manage other peoples expectations of what we can do.

Because we don’t look sick, many of the people who knew us before we had fibromyalgia will ask us do things we used to do. They will expect it of us. So what we need to do is say something along the lines of, “I’m sorry, but I can no longer do that because of fibromyalgia, but I can do this . . . .”

It is difficult to manage your own expectations of yourself when you compare yourself now to the person you once were. It is even more difficult to manage other peoples expectations of you now your new set of clothes is made from the popular new brand of fibromyalgia. I speak from decades of experience of living with chronic pain and fatigue.

3. Pacing Yourself

I swear, if I hear one more person tell me to pace myself and learn what my limits are, I think I will puke. Having said that, I want to mention it to you because it is so important. It is always a good thing to keep in mind because pacing ourselves is not something we are accustomed to doing.

Trying to pace ourselves is like placating this evil illness, we call fibromyalgia. I don’t want to pace myself because I don’t want to give into this disease. But I know, deep down, if I don’t learn to pace myself, I will not win the race between me and that f-bomb, fibromyalgia. I want to win, or at least peacefully coexist with it.

If we don’t learn to pace ourselves, then we will overdo it and, as we all know, fibromyalgia shows no mercy, it has no grace, it demands consequences to our actions however unfair that may seem. So if we want to get anywhere outside of our bed of pain, we have to pace ourselves.

We need to understand that there are things we can do if we pace ourselves and there are thing we can’t do. What we might have accomplished in a day, back before fibro set in, may take a week to do now. But if we pace ourselves, in the long run, we are better off.

Life as we once knew it, is now gone for good, or at least until modern science can develop a cure or a better treatment plan. However, at least for me, these three items previously mentioned help to cope with fibro much better and allow me some sense of normalcy. They give me a sense of meaning, joy and hope for the future.

There will be at least one more article in this series and maybe two so click on the follow button so you’ll know when those posts arrive.

Troy Wagstaff ©

This is written for informational purposes only and not for medical advice. I assume no liability for the application of this information. Please see your health care provider for any medical advice.

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3 Responses

  1. Pacing myself was/is the biggest challenge living with fibromyalgia. I’ve come a long way in the last two years, but there are times I slip and try to get it all done. Then I pay for it with a flare. 😦

    There is a new linkup I’m hosting every Friday for spoonie bloggers to linkup posts about chronic illness. I’d love for you to join us! http://www.beingfibromom.com/chronic-friday-linkup-1/

    Gentle hugs, Brandi, Being Fibro Mom

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