This time of year can be a bit gloomy and anxiety-provoking for me. Winter can be beautiful with the snow, but the harsh winds, bitter temps and cloudy days make me long for spring. I am almost guaranteed to spend a good part of one month (usually February) in a flare mainly due to the weather.
My all-too-familiar friend of heightened pain, that is a mixture of a centralized deep, gnawing pain intermixed with a grinding pain that feels as if my muscles are being kneaded like a blob of dough, develops. The effect is annoying to the point I have visualized ripping off my skin as a means of relief. All of this drains my energy making the simplest tasks, like walking from the bedroom to the bathroom, an athletic feat.
Winter also represents cold and flu season, when the dreaded germs and viruses are ready to attack, and I may become one of its targets by happenstance from a once-in-a-blue moon outing, or the more common event of a doctor’s appointment. I still can come into contact with others, like my husband, who can become an unfortunate host for germs. Fortunately, my immune system must be pretty strong because I do not acquire many illnesses.
As I age, I worry about illness. Those of us with chronic illnesses already have met our “quota.” It doesn’t seem fair that we should have additional conditions, even acute, bear down on our bodies. I know that fibromyalgia is progressive. How could an illness that keeps the body in constant and varying types of pain and gradually affects other systems of the body, such as respiratory, gastrointestinal and neuro-cognitive, not be progressive?
I have minor flares that last from a day to a couple of weeks. Then there are the major flares. I have had two in the course of my illness, which is going on 21 years since I noted my first symptom. These types of flares are lengthy (the last one being in 2009 and lasting close to one year) and the previous level of functioning is never fully regained. It can be episodes of word-finding difficulties, to needing more rest breaks throughout the day.
Growing older is another worry
Getting older only brings to mind the fear of what my future will hold. Having worked in nursing homes and hospitals, I have seen how the effects of health conditions (such as cardiovascular disease and diabetes), combined with the aging process, can worsen the condition or make it harder to resume a healthy lifestyle. For me, glaucoma and cardiovascular issues (high cholesterol, high blood pressure, stroke and heart attack) are familial issues I have to be aware of as possible challenges in my future.
I realize how fortunate I am to live in a home, having a loving marriage, with a healthy husband who can still work full-time, a sweet pet, and with both his salary and my disability pay, we can afford the basic necessities, in addition to what I see as a luxuries (able to eat out when I am up to it; cable TV/internet). Yet, those things cannot prevent unexpected events in life, just as this insidious illness was unpreventable.
If it were not for having a loving marriage, I would be not only lonely, but struggling to have my basic needs met — living in a low-income housing unit, relying on state assistance for food and prescriptions, not to mention basic clinics for medical assistance and select dentists or dental students for oral care. Even though things are are stable at present, I can’t help but worry that my husband’s health may decline someday, or that I may develop other conditions to add to my current health status.
Solutions allay the worry about problems
Wanting to feel some sort of security, when I worry about certain things I try to figure out solutions to get around challenges in hopes it will alleviate any anxiety. For example, having grown up in a rambler house, I always wished to have a two-story home someday. Now that I do, it is cumbersome on my bad days to have to climb the few steps to get from that part of the house. Should there come a time that climbing those few stairs may be difficult or a hazard, and my husband and I decide to remain in our home, we can always get a motorized chair-climber. If grocery shopping is an issue, we can have them delivered at little cost.
If my husband lost his job or had to go on disability, his retirement and my disability would enable us to survive, but we probably would live in an apartment and life would be altered. At the same time, we would be okay and still have each other and our puppy. It is the physical loss of that special person that makes it hard to move forward in life sometimes. I see myself being in a retirement community in the nursing unit needing assistance to get dressed or walk small distances, with the help of a perky, young woman who will remind me of my 20-something self. Having few friends and relatives who live close by, in addition to those who have estranged themselves from me due to my inability to be the person I was before fibromyalgia, I worry I will be one of the frail and lonely residents for whom staff have little time to dedicate, and that others wonder why she has few visitors.
While many would say to channel those energies into something positive, when you cannot do anymore or are extremely limited, this option is not feasible. This only creates a cyclical effect: The problems are thought of because of the health issue, and instead of taking action to decrease the anxiety, it is only heightened due to a reminder that taking action is not possible.
For now, I focus on the present. The good days are revealed and the bad days are dealt with as best as possible, and the reminder that a good day will be in the future. I can’t lie and say that the worries don’t live in some corner of my mind, but, the future is unknown to us all. We can only do our best, face challenges when they occur, and keep hope that future discoveries as to the origins and improved treatments of fibromyalgia will be made soon.
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.
Lori, we could be twins. Be glad you have a husband and a home. Unfortunately, some of us had those things and they are now gone, due to this strange thing called “fibromyalgia.” Know that I cried as I read your article and that I, too, am a survivor!
Lori,how I can relate to your struggle.I have had fibro for 21 years as well. If it weren’t for my loving husband I don’t know where I’d be either. I certainly cannot work. My husband helps with things around the house and even gets the groceries. My fear is something happening to him one day…like he dies before me. That terrifies me because I don’t have friends or family here and it’s just my husband and I and our kids but they are 20 something teenagers. Ha!
Thanks for being so honest in your note, so that the rest of us can be honest.
As I mentioned in my too, it sometimes feels like it is my husband and I on our own. I have lots of friends but many do not live close and few family members, some have ‘disowned’ us due to my illness. I know so many others are struggling and are not as fortunate as I. I am glad that it brought some to discuss their own issues and hope it didn’t create more anxiety for most.
Fibromyalgia began at age 55, husband died when I was 61, taught in primary grades until I was 70. (Had to have a reason to get out of the bed) remarried at 71. Have had breast cancer needing surgery and radiation, lung cancer ( 3″ wdge removed from middle lobe), and Colin cancer and surgery. Right Audrey in neck 70% blocked, low thyroid, high cholesterol and restless leg syndrome.
I will have my 78th birthday in March, will never give up. I have two children and two grandchildren and a husband to live for. I feel as if I have had the flu for 22 years. Have never stopped hurting, very little sleep but I will not let fibromyalgia destroyed my life!
Wow. If you could hear my long, low whistle then you’d know how much I admire your strength and positive attitude. You are a great inspiration to many.
WOW! You have definitely had your share and then some. I know you must appreciate each and every day given that you have experienced some intense health conditions that make many of us think this might be the way our lives end. I have a mixture of feeling grateful that I have so little to deal w/ in comparison, and also much admiration for all you have endured. I am sorry that you had to go through this, but, definitely sounds like you know, evenmoreso, what to treasure in life the most and take from each day what good that you can. As with everyone w/ this illness, I am sorry you have to endure this and I hope that you will never have any added health problems arise. Definitely and inspiration!
Thank you for comments, Denise! I got teary-eyed when I read your comments! It pains me that so many of us have to endure this illness and all of the judgments, lack of support, misunderstandings, and realities of life that can occur with it. I have a fortune cookie that says, “Count your blessings” that I keep on my computer. While I am highly aware of many people/situations that bring much happiness into my life, on bad days filled with much frustration, I look at that fortune, take a deep breath and muster through whatever is the issue. I hope that you have many blessings to comfort and aid you in your journey of life with FMS. Take care
Thanks, Lori. That means a lot. When you’ve lost pretty much EVERYTHING, there’s only one way to go and that’s UP! I just keep waiting for the “elevator” to go to the next floor. 🙂
I remember when I was growing up I always wanted to be w/ the old people as I thought them far more interesting-now I am old and no one comes around.
Seems my elevator has broken down.
Maybe your elevator is in the wrong building? 🙂