A moment by moment battle

Now that I am looking back at the worst of my days I can see them more clearly for what they were and articulate what it’s like more clearly.

It’s like stumbling over every hurdle whilst running a marathon with no option of stopping. Or maybe that’s just me. I don’t give up. I will never surrender to the pain or the anguish. I will always fight on. I’m not sure if it’s stubbornness or preserverance but either way there’s a part of my personality that I feel helps me through the hardest days. And then there’s my other crutch, Netflix. Hours and hours of quality binge worthy television. I am so grateful for being ill in the time of Netflix because reading is too hard when I’m in agony.

Life with fibromyalgia when you’re in the full grip of it is a battle. Not a daily battle but a battle every moment of every second. A battle to fight the constant pain and ignore it, a battle to form thoughts, a battle to figure out what to use precious slivers of energy for.

Life with fibromyalgia as a parent is even harder. Parenting without any illness is hard. There are so many priorities in my head that come before my own wellbeing. My children’s safety, their health, their happiness. My husband’s health and happiness. My gorgeous dogs. My parents and parents in law and other family members. My friends.

Financial stability, healthy food, care. My career which is important to me and is linked to financial stability.

Then there’s hopes and dreams.

So it’s a hard task to have to figure out how to bring self care to the front of all of that but that’s exactly what I need to do. To bring it up to the top of the list with my children’s safety. Because there’s no other way to claw my way out of this mess. It’s like a black hole and it’s so hard to get out that it feels like my nails tear and rip, trying to cling on to the sides of the slippery mud walls and clamber up. I slip often but for some reason the last couple of weeks have been the most promising in a long time. I’ve had two amazingly enjoyable days with my girls and I’ve managed to enjoy them without the screaming “I can’t do this” in my mind. Without the overwhelming brain fog that renders me useless as a parent. With enough energy to connect them with happiness and playtime and fun.

I went off antidepressants with the intention of changing to another kind but then realized it’s trial and error so I wanted to see if life was better without them. I warned my husband and explained why (it’s all trial and error and I wanted to see whether none at all is better than any) and I’ve been feeling better every day since. Today is a down day and full of pain but I know over overdone it and I know I will bounce back after rest. I’ve also had a vitamin B12 injection and two Vitamin C infusions which I believe have had an enormously positive effect and have relieved the suffocating fatigue. And I’ve slowly slowly become more active, walking more and being outdoors more.

Stress is my trigger and I’m working hard to alleviate it so I don’t drown again. I know what stresses me and what I enjoy so I’m going to keep chipping away at it until I’m back to myself and jogging 3 days a week.

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