I’m a little disappointed, it feels like one step forward and two steps back.
I had been feeling quite well the day before, home with the children with relatively low pain and fatigue levels. I had had a busy morning ferrying the children around and then getting the baby to sleep.
All of a sudden my fatigue levels spiked, I was unable to stay up and all I could do was lie on my side in bed and breathe and try not to vomit. I was too tired to listen to my meditation (too tired to listen!) After 45 minutes my head was clear enough to get up and take a bath and smear lavender oil on my feet. When the baby woke I was only well enough to lie in the floor while he played.
When this happens, not only am I feeling the symptoms, but I’m feeling the grief and the guilt. I think ahead to all the things I need to do but now worry I can’t do. I think of the burden on my husband trying to earn all the money and help so much with the kids and the house. I think why it is not fair. I have been doing All The Things, everything I can think of to be well. So just feel like this is a slap in the face and a reminder that no matter what I do I still have Fibromyalgia.
I’m taking the Low Dose Naltrexone, going to bed as soon as I can, sleeping as well as I can, pacing as best as I can, taking MSM, doing gentle yoga and stretches, trying to get to the physio (no easy feat to sync her schedule with my childcare opportunities). I’m relentlessly optimistic about my wellness. And here I sit.
I know I’m lucky that my weary legs can carry me up and down the stairs to my baby’s room. That I have a car to get around (because I’d never get anywhere by public transport with two children). That my husband looks after us. I have done so well and experience so much joy as a result of the hard work I’ve put in. But sometimes it’s just a rough day with Fibromyalgia.
In my travels through the research around fibromyalgia and chronic fatigue syndrome I keep coming across references to depression.
On a somewhat serious note, I have to confess that I do work hard to stay away from the “black dog”.
It is really hard to stay positive in the face of continual pain and (soul crushing) fatigue, think Groundhog Day with the flu.
There’s no way to describe what it’s like living with this. Or feeling like I’m continually letting down my husband and baby.
Or feeling trapped by the choices around work (balancing child care, losing a third of my income for someone else to look after my baby, my neck, work opportunities, money). This one is a biggie for me at the moment.
I feel sad.
I get angry.
The only person who suffers when I do too much is me. The increase in pain and fatigue is hard to take when it’s already hard!
The balance is difficult.
Here’s a few tips for dealing with it:
- Do the things that make you happy.
- Do the amount of exercise you can and the type of exercise you enjoy.
- I enjoy my baby and husband and dog, I get so many kisses and hugs daily, I highly recommend this!
- Focus on the positive. Write a list of your favourite things, the things you’re thankful for and make the most of them.
- Journal. I write through everything. I find I can get a bit anxious or put stressful things on replay mode in my head. Writing it out can help.
- Have a bath with a book. This is my go-to relaxation choice and I do it often. I’ll negotiate with my husband, he can nap and I’ll have a bath. Find a little relaxation ritual that you could do daily.
- Talk to someone. I have my husband, my sister and my Luke. But if you don’t have a person (especially one who gets the fibromyalgia/chronic illness) ask your doctor for options. I always find it cathartic to relay the symptoms I’ve been dealing with to my physio, they hear and they get it when they feel how tight or sensitive your muscles are!
- Know it’s NOT a failure if you need an antidepressant. You deal with so much. You are amazing and this is because you know what you need to do to be well (whatever that means for you).
- Thank God (or the universe, or whatever you believe in) for the good things. There are good things.
It all sounds very easy, and I forget these things when I am in the grips of extreme pain or so wildly tired that I can barely string a sentence together. But we have to fight. Every day.