The sun’s rays have finally shown after weeks of cloudy, rainy days. The vitamin D is greatly appreciated while I play ball with my bouncy (now six-month-old) puppy. I had forgotten how much caring for a puppy is similar to a toddler after a nap.
My hair is a mess. The soft, tousled curls from last night’s shower are nowhere to be seen. The hair doesn’t vary much in look. A good hair day now is equivalent to the bed-head look of when I was younger. I think I may have contracted my husband’s laryngitis In my vigilance, I began taking a zinc supplement and readied my saline spray. All this, along with my regular medicine and part of a Neurontin tablet to reduce the flare symptoms I have experienced the past couple of days.
Like all those with chronic illness who try to have some semblance of a life, we try to assimilate to the lives of those who are healthy (or our pre-illness state), sometimes ignoring what our bodies are telling us. In other words, we live double lives. Since the arrival of Samee in November, my days start promptly at 5 a.m. Evenings are shared responsibility, but from morning until mid- or late-afternoon, depending on my husband’s schedule, I am awake and semi-active. Samee is, like most pets, very intuitive; she has learned to pare back on the animated behavior and provide comfort on my bad days and during flares.
I realized within the first month of having her that I have to be careful or I would make the same mistakes I did the first couple of years after I went on disability. Even though I was aware of my health and its limitations, I thought I could find menial at-home work. After pursuing various websites, word-of-mouth and related ventures, I realized that finding that particular niche was not going to be as simple in reality as it was in my mind.
After trial and error, that included being fired from one and having to quit two others, I forced myself, once again, to realize I was mistaking myself for a healthier person. The expectations of the job, and myself, were not in sync with the variability needed to accommodate for bad days, fibro fog, and fatigue.
Part of the problem I finally addressed was that I was still living the double life. I still thought I could present myself in a different light, or not have to mention my health until faced with a bad flare. Even then, I thought I would always bounce back and be able to continue at the same pace, not realizing I was adding undue stress to myself mentally and physically. All of this, just to keep up the partial charade.
Now, there is variability in everything I do in life. That way, on bad days I can dedicate time to rest. Samee’s meal times are always the same, but the type of exercise and extent varies by my capability level. My weekends, or respite days, are my husband’s days off, except for when he was ill and I took on more daily activities as provided little creature comforts for him. Again, I still paced myself in my sanitizing, housework and tending to the puppy. This prevented me from collapsing into a massive flare and taxing my immune system. It helped when he had a cold earlier this winter, and even if I have a cold now, it is a much milder form than he had.
The message I am trying to convey is this: There is virtually no task that can’t wait or be pared back to allow for your fibromyalgia to take precedence. As part of the coping strategy, it also is important to put your health first and foremost; the other aspects will fall into place as you see fit.
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
Nothing quite like being able to have things sound so simple. Looking out for “numero uno” may be complimentary and healthy for some-mostly depends on one’s own self-esteem.
I know that for many of us it takes time before we feel emotionally strong enough to stand up for ourself by setting boundaries and saying ‘No’. Every persons’ situation differs. I realize that lack of support, and even being belittled or treated as if you are feigning an illness, makes it harder to do so. You need to find those who can support you (ex. FMS groups) until you believe in yourself and recognize that positive change can occur when you start caring for yourself – after all you might do this for others, why should you be deprived or treated any less?
Great article! We all do lead double lives don’t we? It seems as if my mind can’t quite remember at times that I have a chronic, debilitating illness. Then I do too much and my body reminds me in spades! It’s hard to find a balance…but I’m getting better at it. We need to love ourselves – even if others have forgotten us – and take good care of ourselves! Only those of us with this illness truly understand the daily struggle.
Excellent read and I can certainly identify. A lot of us were superwomen who multi-tasked; were all things to all people and spun a lot of plates insisting we go higher and further. Enough was never enough. My motto was to do a common thing uncommonly well. It’s like I really have already lived a couple of lives. So I don’t feel guilty at all for me placing myself in a position in order to recover the best I can. I do need to be true to myself. I finally am balanced even though it may not look like it to others. I am content in knowing I am living within the limits I have currently. It has forced me to draw closer and closer to my Lord and Savior and to see the joy in simple things. My peace, hope, and trust have been restored. So I chose to see the silver linings and never compare myself to others. I am not stable enough to hold down a job but I manage to have purpose and goals each day. They just look different than other people’s. I am very blessed to have help and be around people who ‘get it’ and believe me.
I can relate to this so much. I think the denial that goes along with this illness can profound. When you have good days or good days become good weeks, it’s easy to think ‘I’m over it, I’m ok’! And then we end up so overzealous that we go overboard and there we are, back to square one, AKA a fibro flare.
I agree Sandra! For me, being able to have good days made me feel like I was ‘coming out of it’ or I could accomplish what I wanted out of life and have FMS on-the-side. Sadly, that is not the case and our health must be at the forefront else we make ourselves sicker and sicker.
Yes, great article, I am realise that I do live a double life, but now try to do better for myself, in doing so, could loose some friends, but, Hey, ME FIRST,,,,that sound selfish, but that is what I will do…..
It is not selfish at all; it may seem like it, esp. if this is something you have not done for yourself before, but, actuality an important step for all (regardless of health issues). Those who truly care will not leave your side, if anything, they would support and applaud you doing so.
I definitely relate to this. I have to tell myself that I can’t do everything in one day like I used to. I now spread the wash over a couple of days. I clean one room in a day rather than the whole house. I had to give myself permission to do this and to realize that my health comes first and the other “stuff” is just things that will eventually get done.
I understand this all too well. It took me quite a while to realize certain particular things, such as: I never do laundry and vacuum in the same day (aggravates my shoulder/neck muscles = tightened, locked muscles and potential for headache), dedicate one part of the house or one particular task (like dusting all rooms). Sometimes it is so easy, on good days, to get caught up on one task which leads to another and another instead of sticking to one thing. Glad you have found ways to not overdo it!