Dear family and friends,
First and foremost, I’m sorry. I feel like I’ve let you down in many, many ways. And there is nothing to say, except, “I’m sorry.”
I can honestly say that I don’t have a handle on what’s happening with me, lately. At one point in the not-so-distant past, I was lively and energetic. That girl is…. well, she’s gone now. And I don’t know where she went.
I feel like I can never get enough sleep. Never. I’m exhausted. During the week, I force myself to get out of bed and carry on with my day. I get up at 5:30 am, drive to work, work all day (most of the time without a lunch break), drive home and finally take my shoes off at 6:00 pm-ish. I. Am. Exhausted. I make dinner (which, admittedly, isn’t all that exciting these days), and I collapse on the couch, too exhausted to do anything else. By the weekend, I lie around the house, unmotivated to do anything but sleep.
And then, there’s the pain. I don’t know that you would ever understand, unless you have been where I am right now. Miserable doesn’t even begin to describe it. Imagine, if you can, the last time you were really sick. Then, imagine the last time you were really sore. Like… for me? It’s like the time I had walking pneumonia, combined with feeling like I had just done a half-marathon. I dread waking up, because moving in the morning is like trying to break out of an invisible cast. I’m stiff. It hurts. And I don’t know if it’s just a morning thing, or if I’ll be suffering all day. Once I get going, random things will bother me. My hips will hurt. Or my toes will burn. Or my back will ache. Or I’ll be itchy. Or my legs will cramp. Or I’ll have a headache.
Good God… the headaches. They’re not to be underestimated. It could be a dull, constant headache. Or Satan can be gripping my brain with his red-hot, pokey fingers. They can last a few hours, or for days.
I get tired of taking medications. Side effects from them mean that I have to take other things to try to feel better. For example, the Tramadol makes me itchy. So I have to take Bendryl to alleviate the itchiness. But Benedryl makes me sleepy. So I have to take an energy pill. The energy pill makes the pain worse (not sure why). So I have to take Tramadol. And so it begins, again.
……I carry guilt with me. All the time. I feel guilty because I am tired. I feel guilty because I am lazy. I feel guilty because I am crabby. I feel guilty because I am distant. I feel guilty because I’m weak. I feel guilty because I’m losing the battle.
I don’t have the answer. But it isn’t for lack of asking the question. Please, don’t stop loving me. Don’t leave. Don’t close your ears and your heart. I’m trying.
Maybe, someday, the girl that you used to know will come back. Until then, just keep loving the girl that I am, now. Hug me. Tell me that I’ll be okay. Hold my hand. Talk with me. Let me vent. Help me forgive myself.
With unparalleled love,
me
sameburndifferentflame.wordpress.com 
Nice thing about loved ones, they’ll stick around to help you along.
I am quite fortunate. 🙂
I’m so sorry you’re experiencing so much pain. I send you hopes for healing, and soon. Really soon.
I don’t know enough about your situation, but I have gone for acupuncture treatments in the past and am a big fan of them for pain management. Just an idea.
I am quite sure your loved ones won’t ever stop loving you.
Thank you. 🙂 I’ve got great support from my family. And hopefully I’ll have this pain under control soon. 🙂
Thank you for reading!
My sister-in-law went through something very similar and it left her terribly depressed. The doctor finally diagnosed her with fibromyalgia. Whatever it turns out to be, know you’re not alone. As a family member, I felt powerless to help her, but knowing I was there for her to talk to, or even get her out of the house when I visited, improved her spirits immensely. Now she has the pain somewhat under control with medication and assistance from a naturopath and also from acupuncture. Good luck!
I’m so glad that your sis found some relief. I’ll get there, one day. But some days, I’m ridden with guilt and paralyzed with disappointment. She’s lucky, as I am, to have good peeps who love her, unfailingly. ❤ You're a good egg. 🙂
I understand. I have Systemic Lupus / Fibro / possibly MS. I feel your words on a very body-like level and extend the same apology to those I love, as well. Sometimes, just carrying on sucks.
One of my besties has Lupus. And Fibro. So I can empathize with you. I know that much of what we go through is keeping our minds focused on positivity and progress…. but damn…. there are just sometimes when you can’t see the forest for the trees. Every day, I try again. It’s all I can do.
Thank you for reading!
So true. I had a television appearance on Monday. I went and we taped and I know I looked like a normal, healthy person. What the camera didn’t see was that it took me 3 days of being in bed, in pain and feeling like I had the flu (what flares feel like, sometimes) that I had to go through because of the overexertion.
All we can do is try. It gets hard, but it’s nice to be able to reach out to others who understand. We’re all out here pulling for you.
PS- you might like http://www.butyoudontlooksick.com/ – I’ve found wonderful support and articles there. Makes me feel like I’m not going through this crap alone.
Thank you for your support. It’s hard when you don’t look like you’re sick or hurting.
Thank you for the website suggestion, as well as reading my blog. 🙂
I am so sorry to read you are not feeling well. I am wondering if you may have fibromyalgia and/or Chronic Fatigue syndromes? The bone-crushing fatigue, headaches, random moving pain are hallmarks of both syndromes. Have you been seen by a rheumatologist? I have moderate to severe fibro and have a wonderful rheumatologist. It took time and trial and error to find the right combo of treatments -both medication and alternative practices such as Reiki and massage – but i am now able to function with my pain mostly controlled. I also have sleep apnea, and the fatigue i had (from lack of refreshing sleep) was awful.
Please, do not feel guilty about the limitations you are experiencing because of your fatigue. Your body is telling you there is a problem. I know it is hard NOT to feel guilty…but if you do have fibro/CFS, you will need to learn to pace yourself. (I still have problems with that!) Be gentle and forgiving with yourself, and take care of yourself! These syndromes can be difficult to manage, but a good doctor, the right combination of meds, good sleep and time will helpyou to feel better!
The About.com website has a section for fibro/CFS, and has a lot of good info in it. Best of luck-i hope you feel better soon. If you would like, you can email me questions about fibro…i have had it for twelve years now, so i know quite a bit about it.
Sincerely, Wendy Kolb
I do have FMS. I’d love to talk with you about it, as you’re somewhat of a veteran of it. I feel so new in the diagnosis, I often don’t have hold of all the ups and downs. Today is good, tomorrow isn’t. No rhyme or reason to it, sometimes. I’ll send you an email. Thank you for the words of support. It came in a very timely way for me. 🙂
I am so sorry…i just stumbled on your page again and saw that you would like to talk. If you contact my email, i will send you my cell number so we can talk…
I am hoping you have a better handle on your fibro. This syndrome is so noxious and so resistant to treatment, it can be terribly depressing and discouraging. I know, early in my life as a fibromite, the horror of believing that the pain i had was never going away-that i was feeling the best i ever would again and that i could only feel worse, not better. I am very happy that i was wrong. There are some days that i feel wonderful-only small amount of pain, easily dealt with, using my meds and 600mg of ibuprofen.
Again, i am so sorry i did not see your reply…this time i am receiving notice of any replies rather than depending on my (very faulty) memory.
In the meantime, take care of yourself!
Wendy Kolb
Wow! I don’t really know anyone that has to live like that. It takes a lot of courage to write what you did. Hang in there girl!
Thank you! ❤ Every day is an adventure. I'm proud to say that I've pulled through the worst of it, I think. Not the pain, but at least the mental distress.
Saw your comment on The Bloggess post and had to read your post. I don’t know you and can’t even imagine your suffering. But please don’t feel guilty. You have a disease. Would you feel guilty if you had cancer and the pain and exhaustion came from chemo? Do cancer patients get called lazy? Absolutely not. You have a real illness with real symptoms and real pain. Medicine hasn’t caught up fully yet, but they will.
It’s not selfish to take care of yourself. You have to love yourself before you can truly love others.
I hope you are well and find a peace.
You couldn’t be more right. Sadly, I know that cancer patients feel guilty, as well. I think it’s just the human condition. We have an expectation for ourselves and anytime we don’t live up to it, we feel shame. It’s a blessing and a curse. Keeps us motivated, but sucks, sometimes.
I appreciate your kind words. 🙂 Thank you for reading!
Bless your heart. I hope it all gets better soon.
Thank you!
Wow! I just read the words I have wanted to say to my family but did not know how. What you wrote about feeling guilty, that is me. I am trying to deal with the guilt, pain, muscle spasms, migraines, shame, and all of it is just sometimes too much! I have FM, CFS, IBS, a few other acronyms and moods. Thank you! I hope you feel better and have pain free or at least painless days and nights! Good luck!
Thanks for reading, Rachel. It isn’t easy, that’s for sure. But all we can do is get through one day, one hour, or even one moment at a time. 🙂 Know that shame and guilt aren’t yours to own. Those are projections of what we think we should feel. No one wishes for this disease. No one wants the crap that comes with it.
Know that you’re amazing. And strong – even when you feel weak. And I believe in you. ❤