If there is one thing I have learned in my seven years of being sick with Fibromyalgia and Myalgic Encephalomyelitis it is that it is all encompassing. There are no aspects of my body or my life left untouched. I recently wrote a post about why I’m grateful I got sick and that always stands true; there are both good and bad aspects of being Chronically Ill (okay, mostly bad). Being realistic, honest and embracing of both makes this journey slightly more bearable.
I wish I could say that the pain is the worst part of Fibro and CFS. One would assume that to be true, but there are worse and more frustrating aspects to it than just the pain.
I go to bed tired, I wake up tired. In fact, most of my life I live in an exhausted stupor. It isn’t just tiredness or exhaustion in terms of wanting to sleep though. There is a constant, nagging exhaustion that lies within my bones. Sometimes, my bones are so tired, it emulates the feeling of pain.
2. Lack of Motivation
Sometimes, it takes me hours for morning pain and stiffness to abate. Mentally, every night I go to bed with my ambition list in mind; my “what I want to accomplish” list for the following day. Despite my best intentions, I near never accomplish what I hope to. Oftentimes just getting through the morning pain and stiffness consumes my energy to get up and function. This is particularly angering on days when the pain (or other debilitating issues) is minimal. I often times have to argue with my inner self that it is’t laziness that results in a lack of motivation, but rather a constant state of overexertion and recovery that results in this.
Oh, where to start with the guilt? I’m the absolute Master of guilting myself. Guilty I don’t work. Guilty I don’t earn money. Guilty I can’t go to lunch or shopping with my Daughter. Guilty we don’t do family outings. Guilty I don’t see the people I love. Guilty I don’t clean my house enough. Guilty I don’t do house projects, considering I’m home all the time. Guilty our financial situation isn’t what it should be. Guilty I don’t walk the dogs more often. Guilty I spend so much time on devices. Guilty I spend so much money on Doctors. Guilty my Husband uses his vacation to take care of me. Guilty I watch so much tv. I think I’ve exhausted this topic. Get the drift? I feel immensely guilty. I frequently have to remind myself that if ever I had the choice in life, this is not how I would have chosen to live.
While in many ways this overlaps directly with guilt, it isn’t necessarily one in the same. I met my Son’s Girlfriend the other night (whom I loved, by the way!!). While we all sat there talking, it took me three tries to say January; I first said June and July. I used to give presentations and speeches to Executives and College Students and it was a gift to be a talented Public Speaker. Now, I cringe when I have to meet new people, as I never know what will come out of my mouth. I hate being on Disability, too. While there shouldn’t be any shame in this, personally, it’s the antitheses for all I worked for all my life. It kills me when people ask me what I do and my answer is “I’m on Disability”. I need to find a new answer to that. Maybe “I’m retired”?
In any given day, I’ve had a fever in the morning, had it normalize and then had a fever again in the evening. Fevers are often the precursor for the next symptom.
6. Hot Flashes
I’ve always been cold, all my life. I also have Raynaud’s. So it’s particularly strange to suffer from hot flashes. They are intense and if I can’t cool off quickly enough, they lead to nausea, dizziness and sometimes, fainting. I’ve now gotten the hang of living with this one (joy). Now I wear layers, so if I need to quickly cool off, pulling off a cardigan or my socks can quickly achieve that.
7. Profuse Sweating
Hot, isn’t it (joking)? Hyperhidrosis is embarrassing, to say the least, never mind extremely inconvenient. Fevers and hot flashes obviously can bring on profuse sweating, but not always. I have also broken out into sweats while I’m freezing. I have now learned to sleep on towels to avoid changing my sheets more than twice a week.
8. It’s Cyclical Nature
When I first got sick, I always used to think to myself: “okay, if we can just stop the razor blades in my knees, I’ll be much better”. I have learned, sadly, over the years that this isn’t the case. I have found that no sooner does one symptom, or set of symptoms, lessen than another takes it place. The longest “remission” I have experienced, in seven years, is six months.
I always used to think that pain was the most debilitating aspect to Fibro and ME. It’s not. I live with pretty much constant nausea and stomach issues. I have tried everything from diets, Probiotics, Ginger, Essential Oils, Massage, Reiki and have even tried drugs they use after anesthesia and for Cancer Patients. I have yet to find anything that works. I am considering trying Accupuncture and will post about that experience after the New Year.
Dizziness and Vertigo have eliminated my ability to drive, which has been life altering. They have caused falls and make even riding in the car a miserable experience. I have chased this symptom far and wide; from Cardiology to ENT and have yet to find any conclusive answers or help. For the past year, dizziness, vertigo and nausea have limited my life more than all of my other disease symptoms combined. When your whole world constantly spins, it’s difficult to go anywhere or do anything.
I’ve spent countless nights up until 5am. At that point, why even bother going to bed? I lay there awake hating that I’m still awake and knowing that it is going to severely affect my day. It also makes it hard, because it’s natural to want to take a nap to refresh myself following a night of no sleep. Doing so often makes it another up all night. So I try hard not to nap unless absolutely necessary. I use Lavender Essential Oil to try to help fall asleep, as well as, meditation.
I once had a panic attack so intense that the Store Owner (who also suffers from panic attacks) spotted me and quickly ushered me into her back room to regain control of myself. While I was tremendously grateful to her, I had to feverishly talk myself out of crawling out of the window. I was that desperate to escape the situation and my embarrassment. I have always been fiercely independent, since becoming sick, I have been stripped of that independence, because I have no control over my body. That lack of control leads to a vulnerability that often frightens me and leads to anxiety and anxiety attacks.
While I am tremendously grateful I don’t live with constant depression, I go through bouts of it. Living a life that is so confining and unpredictable would lead anyone to go through bouts of depression. In times of feeling depressed, I try to force myself to focus on what I am grateful for and the many Blessings that I do have. When that fails, I allow myself to feel and mourn and cry without guilt.
Jealousy is an incredibly complex emotion. I would never wish my life on anyone, but it’s incredibly difficult to sit idly by and watch everyone in my world live their lives without any thought of what a gift it is. My Husband trains Jiu-Jitsu, works full time and goes to school full time. I want what he has: a life. I want to be active and to go to work and to go to school. I want to never think about my body or my health and to just live. While I’ve focused tremendously on not allowing myself to become angry, I certainly go through moments of intense anger and again, jealousy. I don’t want my Husband to live the way I do and I shouldn’t expect someone healthy to sit idly by watching tv constantly or just sitting on the couch keeping me company. Except, my life can be incredibly lonely, defeating and sad. Sometimes, I just need someone to do exactly that: sit with me.
15. Hair Loss
We have yet to conclusively determine whether this has been a result of disease or medication, but I’ve lost alot of my hair. I have really curly hair. When I was a kid, I was profusely teased for it, when I became an adult, I learned to live with it. Then I met my Husband and he absolutely adores my hair. It’s become one of the very things that define me. So it has been particularly agonizing to lose it. It began breaking and falling out, sometimes in patches, after I started Methotrexate. I cut it, hoping to save it. The Doctors’ initially said that such low doses of Chemo would not cause such a reaction, but finally admitted I may be in a very small group whose hair was affected and that it may never grow back. Two years on, it still hasn’t grown back.
Life with any chronic illness is challenging and an intricate game of perfect balance to achieve any relief; physical or mental. Finding that balance is a gift. Today, I wish that gift for you.