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Fibromyalgia Grief

The yearning for days gone by, nostalgia for previous abilities. Friends that no longer understand you and memories of your old life. Memories that feel like they happened to someone else. Not little old you.

So, what is it about living with Fibromyalgia that makes you’re feel like you’re suffocating in a cloud of grief? What are you grieving for? I’m grieving for spontaneity. I’m grieving for the way my body used to move. I’m grieving for my brain’s alertness and pain free limbs. I’m grieving for my premedicated self. My body, but mostly I’m grieving waking up and feeling well.

Not knowing how you’re going to feel every morning can be a hard pill to swallow (pun intended) Waking up, and for maybe a split second you feel as though you’re fine, you might even feel spritely, excited for the plans you made on one of your good days, and then you’ll try and get up. Trying to get out of bed uses energy you can’t spare and even drinking your morning tea feels challenging. Maybe like me, you have a school run and the thought of it alone leaves you exhausted. Or maybe also like me, you have a job and getting through the days is becoming more impossible, but still necessary, because you just can’t afford not to work. Or maybe you have nothing to do but even doing nothing is exhausting and you still feel as though you’ve ran a marathon.

I often feel like my future life is now mapped out, pain and grief plague me and the things I have always enjoyed are painfully without reach. Or I can reach them, but if I do them I must suffer the aftermath of that good day, or those few hours well spent. It’s hard. Life is hard. Life with Fibromyalgia is unimaginable, unless of course you have it, in which case you’ll probably relate to this article.

What it isn’t though, and I feel this important to include here, it isn’t a death sentence. It might feel like one somedays, but I can promise you it’s not. It’s a new normal, it’s a challenge and it is sometimes so unbearable you have to cross out all the plans you’ve ever made and start from scratch, but there are good days. There are also people, like me, who understand.

The reason fibromyalgia in particular can feel so hard to live with is the lack of certainty. You don’t necessarily look unwell, in fact even on your worst days you may still look ‘normal’ to some people. You can still smile, use your phone and go to the bathroom unaided, but you might be pumped full of pain medication and surviving on 45 minutes sleep. Nobody knows what another person is going through, not really, but there’s a misconception that you have to look disabled in order to be disabled. Though we are getting better at recognising that not all disabilities are visible we are not there yet. In order to get there, we must first accept our illnesses and raise awareness so that we can signpost people to the correct resources. People who are experiencing fibromyalgia themselves, but also people who have loved ones experiencing it, so that we can help them understand what it is we go through.

I have a few tips of my own, the biggest being pacing myself. It sounds impossible with life’s commitments but it’s so necessary. For example, when arranging social events, I now know I need at least a day in between. If I have plans on a Saturday I don’t make further plans on Sundays. It’s not always practical but it’s something that I find helps me to prevent reoccurring flare ups.

Resting is never wasted time. Allow yourself time to rest, don’t feel under pressure to get stuff done. The more you cooperate with your body the better quality of life you’ll have. Sometimes you need to throw caution to the wind and do something fun despite consequences, but the reality of doing so, is often a flare up and a trip to the doc. Weigh it up. Take your time. Don’t feel guilty for the things you need even if those things include sleep. We can all manage a lot better with life after a decent bit of kip.

Get yourself a tool kit. I am always armed with heat pads and cool packs, migraine strips and compression socks for when those flare ups hit hard. It doesn’t cure them, nothing does, but it may help you feel more in control and anything that dilutes symptoms is a bonus.

Accept help. We’re all guilty of pride and not wanting to ask for help when it’s needed, but actually all that does is make our lives that much harder to deal with. What’s a little support from friends and family going to hurt? Nothing, accept maybe your ego, and your ego is no match for fibro so let your mum do your washing and your mate the school run you are doing your best.

People sometimes set impossible targets upon us. Telling us to be positive and to eat better, move more, and try yoga are all things that may help improve our symptoms but sometimes they are unrealistic goals. Especially during the height of a flare up. You know your body. You know your triggers and you know what you need. Trust yourself and your body, it’s the only one you’ve got.


This article was written by Steph, and we'd like to thank her for doing so. 

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