Please Don’t Stop Asking Me

Please Don’t Stop Asking Me

It’s so hard for people to understand how you can seemingly overnight, go from being active and busy, to being “anti-social.” Believe me when I say that it’s a very gradual and painful transition, fraught with many difficult adjustments.

It’s a shame that people stop asking us to do things because we’ve had to say no on occasion. We truly would rather say YES to spending time with others, doing things we mutually enjoy. We may have to cancel at the last minute due to a flare-up, increased fatigue or pain, little or no sleep, or brain-fog that keeps us drowning in the inability to focus. We truly do want to spend time with you.

Social isolation can be both lonely and depressing. It’s difficult to watch your family and friends carry on without you. It’s really difficult to have to say no when we want to say yes. So even if¬† we say no nine times in a row, please ask the tenth time. We may not be able to stay as long as we’d like or participate in the same way, but we still would love to be asked.

Some things I really enjoy when I’m able: playing miniature golf, going to a good movie, taking a walk along the beach, eating at a great seafood or Indian restaurant, going grocery shopping with my husband, playing a board game. What kinds of things do you like to do when you have the energy?

Last year I went with my husband to choose a Christmas tree at a local farm. The first real tree we’d had in years. We sat near an amazing fire pit while the gentleman wrapped our tree. It may seem like a simple thing, but it was a precious memory for me. I get very few of those, so I enjoy the moment and just breathe in the wonder, simplicity, and normalcy.

I also enjoy being asked to for an ice cream. My husband and I used to go get some great BBQ and sit in the car by the lake as we ate, I enjoyed those times. I enjoy sharing a good cup of coffee or tea with a friend. I enjoy a good phone conversation as long as it doesn’t last more than an hour or so.

I say all of that so that you will reach out to those who are chronically ill and offer them the simple, but priceless opportunity to do something special with them. Don’t give up on us.

Please don’t stop asking me.

 

Originally published on:

http://fibromyalgianewstoday.com/blog/2016/08/22/please-dont-stop-asking-me/

Painsomnia in Fibromyalgia 

Painsomnia in Fibromyalgia 

Painsomnia is when you are unable to sleep due to pain. Try to imagine if you have a really bad toothache that prevents you from sleeping, because no matter what you take for the pain, it’s just not touching it. Chronic pain can be like that, especially if you are in a flare. It’s no fun trying to distract yourself from the pain, knowing you have obligations the next day, but sleep is a distant memory.

Sleep deprivation wreaks havoc on your schedule, your plans, and becomes a vicious cycle. Pain causes you lack of sleep and lack of sleep increases your pain. If you have children who need you, you force yourself to push through, but inevitably pay a price for it. I am in awe of and deeply respect men and women who are parents and suffer with Painsomnia. My heart goes out to you.

My children are grown now, so I don’t worry about having to get up and fix breakfast, get them ready, and drive them to school and extra curricular activities. Being older and experiencing Painsomnia has its own challenges. I’ve never done well on less than 8 hours of sleep, so only getting 4 or less at a time, well let’s just say it ain’t pretty.

Have grace for yourself and trust what your body is telling you. It may be to slow down, it may be to drink a warm cup of chamomile tea, it may be to take a long bath with Epsom salts and lavender essential oil. No one understands your pain and inability to get good sleep like you do. Don’t be hard on yourself and don’t let others be hard on you.

Some things you can do to distract yourself on those incredibly hard nights: pray, read a good book, watch a funny movie, do some gentle yoga, chat with a fellow spoonie on social media who is also awake. I personally play games on my tablet or phone. Sometimes I find that a glass of wine helps. Find out what works for you on any given night, and do that.

Here’s to a pain-free good nights sleep!