CFS & Fibromyalgia: It’s A Winter Storm Every Day

When I woke up this morning, I could tell before I even got out of bed what the weather was like outside. No †I’m not a psychic but my body can tell you whatever it is you want to know about the weather without me even looking out the window! That’s how it is with ME/CFS, Fibromyalgia and chronic pain †your body feels every drop in temperature in the winter months, and the cold dampness that never seems to leave the air here in PA.

As I was driving to work this morning in the winter storm that we are having here, I thought to myself, “I’m sure glad that the weather is not like this every day. I would hate to have to live where there is snow, ice, cloudiness and dampness all of the time. I wouldn’t be able to handle that.” Right after I had this thought, it was as if a lightning bolt struck me and I realized that living with CFS & Fibromyalgia is like being in a winter storm every day of the year.

Being healthy is like a clear, beautiful summer day. You can get up; head out of your house and down the road in your vehicle with nothing but the glorious sun and a beautiful day to take you where you need to go. There are no obstacles holding you back because the weather is perfect and you don’t have to worry about ice, snow and all of the distractions these take off of your driving.

But days like today, the winter storms, are what it is like to be chronically ill. You have to plan your morning a little better because you realize that you will have to leave earlier in order to get to work or wherever you need to go on time †if you can get out the door at all and aren’t snowed in.

Then once you do get out the door, you have to either shovel your way to your car or trample through snow or ice to get to your vehicle. Your legs feel heavy from the extra burden of the snow and each step you take is so careful because you don’t want to fall, so you are moving slower than usual. Then before you can get out of the driveway, you realize that you have to clean all of the snow off of your car just so you can see to drive.

So far, your day isn’t off to the best start and you feel like you have already worked a lot harder than what you should have to just get out the door.

Now that you are ready to head down the road, you are double checking everything to make sure you have a safe drive: Are my lights on? Are my windshield wipers frozen up or are the working properly? Do I have enough gas to get to my destination in case I get snuck in the snow between here and there? All of these thoughts are running through your mind when normally, on a clear day, you would just get in the car and drive.

You are now headed down the road and you realize that even though the speed limit is 55 MPH, you can only go 25 MPH because either the roads are too icy/snowy or the person in front of you is driving at a snail’s speed when they don’t really have to be. You get frustrated because you know that you can go faster but there is an obstacle holding you back, whether it be the car in front of you or the snow and ice underneath you.

You are extra sensitive to your surroundings and you suddenly notice all of the little side roads you didn’t see before because you weren’t looking. You slow down sooner when you see the car up ahead turn on their turn signal and you also make sure you have several car lengths between you and the car ahead †just in case.

You finally make it safely to your destination and you breathe a sigh of relief, hoping that by the time you have to go home the weather has cleared up and the storm is over. If not, you have to repeat the whole process all over again.

Most of us deal with winter storms better than we do chronic illness because we know that they are short-term and it’s not an everyday occurrence. But what if you had to go through this every single day of the year, especially if you are used to living somewhere that’s sunny, beautiful and warm all of the time. You would probably move, wouldn’t you?

People like me who have CFS, Fibromyalgia and other chronic illnesses aren’t so lucky. We have to live with the winter storms every day because there are no other options. We can do our best to deal with the storms, take measures so that we are not always in the middle of a storm, but we know that there is always a storm lurking and brewing in our bodies †just waiting to be released.

Even with the best care and precautions, we can’t always avoid the storms of our illnesses. There is no rhyme or reason to when the storms come and we always have to be prepared.

Every task we do from the moment our feet hit the floor in the morning (if we can get out of bed), until we go to sleep at night revolves around trying to keep the storms at bay. We always make sure we have extra medications, extra pain creams, and extra remedies of some sort, to get us through the day. We are always in fear of the dreadful bedridden days we have experienced, so we are extra aware of everything that sets off our symptoms.

Did I work too long yesterday? If I go out tonight with someone to a movie or dinner, will I pay for it tomorrow? If I do nothing but rest for the next 5 days, will I be well enough to go on a family vacation for a few days?

We become easily frustrated because we have so many hopes, dreams and aspirations but the car ahead of us, or our illnesses, are always there, holding us back.
Our bodies are always going through the pain and the heaviness of someone trudging through feet of snow. We know that we have to keep going, but the extreme exhaustion and pain slows us down and makes our limbs feel heavy and weak.

Just making it out the door in the mornings can be a huge task for us. We have to go through so many hoops just to get moving because our limbs feel like someone is taking our muscles and wringing them out like a dish rag. We have to set our alarms earlier just so we can talk our bodies into getting out of bed, which really sucks because we just fell asleep two hours ago thanks to all of the hormonal problems and pain that kept us awake all night. Then it’s off to take all of the medications just so we can make it to get our showers.

I miss the beautiful, clear sunny days of my life. The easy-going times when there was nothing to think about but just getting in the car and driving with the top down. But those days are long gone and I have to deal with the winter storms that are here now, and that will probably be here to stay forever. I won’t let them destroy me, however. I will continue plowing through the snow and forging ahead as I and many others have always done.

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  1. Danease Gresch says:

    Beautifully said Sandy! Just the way I feel most days. I may have a couple of decent days but then like this morning, I overslept until 8am which is not normal for me. I wake up and feel like I need to get back under the covers and sleep more. I feel lethargic and achy and then I realize there is a storm coming today with snow in the evening. No wonder I feel so bad!

    I take 3 sleep aids and still can’t go to sleep until 1am in the morning. More than likely why I still feel tired the next day. One thing I always know, if the weather is damp, cold, rainy or cloudy, I won’t feel as well that day. My mood will be depressed and edgy. I will ache all over and have trouble figuring out where I should put the heating pad.

    I have gone to a specialist who says all blood work is fine and nothing shows I have Thyroid or Adrenal (Cortisol) related problems. My symptoms say otherwise since I brush my hair and I could make a small wig out of what comes out. I’m surprised I have any left on my head!! He has me taking my temp each morning for 3 weeks. It’s staying in the 96 to mid 97 range. But will this be enough for him to say I MAY have a Thyroid issue?? Will he do more Adrenal testing – not trusting what the blood work says?? Those of us with chronic illnesses that seem invisible from all diagnostic workups, have to deal with this. We are lucky if we find a doctor or holistic practitioner who can pinpoint what the problem may be. We feel that at least if we can get to the bottom of our problem and find something that will make us feel slightly better – – it’s better than nothing at all.

    I feel I have been battling this all my life although it’s only been about 20 years. That 20 years is the most productive time in most women’s lives and to lose it is extremely sad. I,like you Sandy, and most of you on this site, have canceled many a lunch date with a friend or family member, missed Sunday services at church, missed picnics, and various other functions due to feeling too badly to participate. I can’t plan a vacation months ahead of time because I have no idea what condition I will be in when the time comes to pack up and leave. It causes rifts in friendships, family and with your spouse at times. They suffer from our illness too.

    Like you Sandy, I keep forging ahead and praying that someday a wonderful discovery will be made that brings a cure to what ails me and so many others. The only alternative is to lie in bed in a vegetative state and wait to die. That isn’t for me so I keep trudging ahead, researching, trying new things that may or may not help, and trying to be optimistic about the future. I keep looking for that sunny day with the blue skies as well. One day I’ll find it!

    • Hi Danease, Fortunately, I haven’t had the hair loss that you experience and I have heard of others experiencing also. I feel like I lost the most productive years of my life, too. Getting sick at 21 and now I’m 41, almost 42. Those should have been the best years and they have been spent sick, trying to learn how to adjust. Best of luck to you. You have a really good attitude and I know that you will make it through! :)

  2. Well put. I can really identify with this.

  3. I just love reading your posts. I could really relate to this one!

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