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  • Writer's pictureMaggie O'Brien

Helping Yourself Manage...

Often "Fibro Fighters" are plagued by flare-ups. A flare-up can loosely be described as if someone turns up the dial on your symptoms, bringing pain, and fatigue to the maximum setting. Imagine a kettle on the stove. When it begins to heat at a slow simmer that would be a somewhat normal day; however, once the kettle is boiling that would be similar to a flare-up. Flares can come and go, usually when you don't expect it, and likely at the worst Photo by Sydney Sims on Unsplash

possible time. Flares can be of short and long duration, be moderate to terrible in severity, and usually impair daily function significantly.

Fibromyalgia does involve a constellation of broad symptoms. Each individual varies greatly in their experience with the intensity of their symptoms, pain, and fatigue. It is critical then to understand that Fibro Fighters are all different and unique, in terms of their functional abilities, pain levels, and flare response.

A flare can be triggered by a range of circumstances and events;

1) Stress (physically and mentally)

2) Sleep: not having enough restorative sleep

3) Change in weather

4) Overdoing it and not keeping a balance

5) Environment

I remember when I was first advised to keep my stress to a minimum. Ummm, I was literally confused. How does one actually do that? Just saying, easier said than done, right? I mean as if living and coping with a chronic illness is pretty stressful already. The day to day challenges in terms of learning to live with a chronic illness as it makes more demands in terms of impairing one's functional ability, a lack of energy, constantly changing symptoms, loss of work, blah blah blah! Do you get the picture?

Photo by Odysseas Chloridis on Unsplash

Obviously, we can't change our bodies and how these symptoms impact our physical abilities and cognitive functions. However, we can change how we respond to those stressful events. Taking a moment to reflect on what really does matter is key. Determining what is the issue, and what can be done about that issue is the focus. This does change one's perception, the action, and the amount of energy spent on an issue. Thus, the response changes the impact on your person. In short, try to really see what matters, and what you should truly invest your time, energy, and worry in. Examine and be aware of one's self and typical reactions. If I become aware that I have a negative response to a certain event, such as being called into the boss's office, I can then learn to control my response more appropriately. Do I become tense and nervous? Do I start to react prior to learning what is going on? This spinning my wheels over nothing is really quite illogical. Now, knowing the response that is likely to be evoked in me, I then become self-aware essentially. This, in turn, helps me learn to adjust my reaction more appropriately to the situation. The benefit of becoming self-aware is that ultimately the stress level and tension are reduced. The likelihood of having a dramatic blow-up is avoided. I will then be more positive and determine my own behaviour.

It did take me quite a while, even as a grown-ass woman to realize that stress can impact our physical health. I never once thought about my future self's health. I am slowly learning how it is all connected intrinsically. Our bodies respond negatively to stress and we experience it, even if consciously we don't realize it at the time. Symptoms such as tension, headaches, upset stomach, nausea, and achy muscles can all be indicators to watch out for. These symptoms than set off a chain reaction perhaps causing the need to treat the symptoms with prescription medications, over-the-counter medications, and other illegal substances Those attempts at relieving the symptoms may then cause a whole new set of side effects and bad coping mechanisms or habits, etc. that then have to be managed.

Activities to Help Manage Stress

Invest some time in studying and researching what stress reduction techniques and activities are available to you to try and learn. Activities such as Yoga, Tai Chi, and meditation are all good suggestions. Learning any of these activities and then employing them into your lifestyle will absolutely help. Devote some thought and pay attention to yourself, notice what makes you relax. Perhaps a hot bath, reading, a country walk, or playing with your pets. Once you determine what works for you, try and practice that activity to build a routine. Of course, move when you can and rest when you need it. Excercise when and however you can such as swimming, walking, and any other low-impact activity that you are able to participate in.

Photo by Tadeusz Lakota on Unsplash/Photo by bruce mars on Unsplash/Photo by Monica Leonardi on Unsplash

The establishment of a sleeping routine will do so much to restore your energy and your mood. Easier said than done but it takes work. You can begin by setting a reminder alarm to begin your bedtime routines and wake up alarms. Perhaps considers restricting your technology time in case it's overstimulating and interfering with your rest. Ensure you have some low lighting features in your room should you have bathroom breaks to enable you to return to sleep easily. I can't stress enough about having a good comfy bed, pillows, and sleep aids. There are special pillows to support your knees and hips so you are more comfortable now. The body pillow is a nice aid to have which helps reduce the stress on your joints at night and lower your pain level. The selection of sleeping aids will depend on your individual issues and ailments. I keep a cozy room, nice clean fresh bedding, no clutter or mess, a diffuser with my essential oil misting aroma with low ambient light. I have my body pillow and my puppies. Make resting as enjoyable as possible, our bodies as we know require that deep restorative sleep.

I would suggest keeping a journal that tracks your symptoms and flare-ups. This eventually could help determine any triggers or patterns. At first, it may strike you as nonsensical; however, there are many benefits to noting your symptoms, bad days, and good days. By keeping a diary and a schedule of some sort, you can manage your activities and avoid overextending yourself. This journal can also serve to show your medical staff should you have any recall problems due to cognitive difficulties due to pain or "Fibro Fog". Then you can be more prepared, documented, and a better advocate for yourself.

Get Out of the Way of Yourself

It is essential that you are able to realize that coping and functioning with any chronically painful illness will require you to become more open to asking for help from others when needed. This is really quite difficult for many people. The typical response that totals up to "I am fine", really does not cut it and can be quite damaging if one continues to hide their functioning and coping issues by continually minimizing them. We all have a breaking point, there is no shame in that, after all, we are human. I had to realize that and had to find a way to get over myself and accept that I was ill and needed some help. I am grateful that I was able to have good support and get a better care plan to minimize pain. Learning to analyze what your stressors are priority-wise, designing solutions or alleviations, and getting assistance and or resources as needed is key. Also, learning to be social when you can and feel capable is essential in order to avoid isolating yourself away. I understand how easy it is to become a chronic pain hermit, sometimes it's too hard to prepare yourself for an outing and you don't feel up to it. However, we should now and then add a gentle push to ourselves to try to enjoy life and be social. (notwithstanding CO-VID).

In terms of demands on you to accomplish tasks and make commitments, you must give yourself some understanding to allow for the acceptance that some things won't get done, the house won't get clean, you won't shower, and the dog won't get walked. In that understanding your resting when you need to so that the next day will be less difficult. In regards to commitments and appointments, let your close friends know that there is always the potential for your canceling plans and that there is simply nothing you can do about it. Emphasize, however, when you do feel able you will try to arrange a visit. Being open and honest with people never hurt anyone and goes a long way to being transparent and understood to those who are close to you. If you don't have the stamina for a long visit or social outing make it a brief encounter for tea or coffee. Your friends and loved ones will slowly learn to work with plans to accommodate you. In order to do this, they must understand your needs, so you must be open and clear about what would make plans more acceptable and doable for you. Be open and upfront. Don't expect those who can't fathom your issues to know how to accommodate you if you have never clearly expressed your needs.

I know it is difficult to be needy or vocal about your issues and needs. Some people are embarrassed, some don't want to be labeled, some don't want to explain, some are in denial, some feel like they are not taking seriously and feel even crazy some days. After all, my pain can migrate very quickly. One day it affects my hands, and the next my ability to walk or stand on my own. Our illnesses are very unique and often complex, which makes it difficult for our loved ones and friends to comprehend. Allow yourself some compassion and acceptance. No one wants to be seen as weak or a burden. Give yourself permission to accept help when needed. Try not to be so hard and demanding on yourself. This will help ease the adjustment issues at hand.

Well, I hope this makes sense to you and that some aspects of coping with a chronic illness can be eased in some way. Remember to move when you can rest when you need it. Keep striving in your daily life for a healthy balance between stress-reducing activities, movement, exercise, and restorative sleep. Learning to be self-aware and think before we react to a negative stimulus will reduce our stress greatly and enhance our overall wellbeing by reducing flares. Allowing ourselves to be more adaptive and openly accepting of our issues will also smooth the transition process of living and coping with a chronic illness. Do the best you can each day while listening to your body is a good mantra to keep in mind. Remember, it's the disorder, not the person that makes life difficult, so give yourself more love and patience.

From my "dis'ordered life"... to yours

Photo by Prophsee Journals on Unsplash

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