What it feels like to be chronically ill

Hello loves,

I want to talk about how debilitating illnesses weigh a person down. I'm writing this for other people in the same situation as me, and I hope to make them feel less alone. No need for pity - just talking about this is helping me process things. My experience is my own and it might be different for others, but this is what it feels like for me.

Firstly, sleep is never guaranteed with Fibromyalgia and CFS/ME or many other chronic illnesses. I have no clue how I'm going to feel when I wake up, or what time I'll wake up. Sometimes I'll be asleep on the sofa by 8pm and other times I'll be laying awake until 7am with bug eyes and a massive headache. When I don't get to sleep until the time when most people are getting up, I hate sleeping through the day. I miss out on precious daylight and try to rush around getting things done so my husband comes home to tea in the oven, a reasonably tidy flat and a fairly presentable wife. It doesn't always happen. I'm always feeling guilty for not doing enough for my husband, and he already asks for so little. Maybe that makes it worse. It's one thing to aim high and fail, but aiming low and still missing is something else.

I'm never short of ideas for anything - blog posts, plans, etc but having the energy to carry forward these plans is another thing. I have dozens of notebooks filled with pages of ideas, ideas I'll probably never get around to covering. I lay in bed every night planning to do yoga and eat great the next day but I feel like hammered crap when I wake up and gradually come alive through the night. Having the energy to take care of myself properly is often too much to ask. I don't usually eat until about 6pm, and instead of a nice home cooked meal, often I'll have a fishfinger sandwich or a ready made pasta on a big bed of salad. I look at photos of myself from a year ago and see much less definition in my waist and wonder if I'm exercising less or eating more, or is this middle aged spread? It feels too hard to stop these changes happening in my body. Do I try to fight it, try to stop these changes in their tracks? Is there anything I can do? Do I have the fight and energy to undo the changes ill health is making to my body or do I accept a slow slide into the invisibility of middle age?

Being chronically ill ain't pretty. It's crusty eyes, bed sheets and pillows thrown all over the room from a tempestuous sleep, lines all over my face from being tangled up in the bedding, hair in a bird's nest from the night sweats and waking up in need of hosing down by the fire brigade. It's feeling like shit and not having the energy or creativity to put the make up on that I know will make me feel human again. It's weight gain, muscle loss, abdominal bloating, rashes and dry skin, smelly body parts and no energy to lift my legs over the bath for a shower half the time, making do with washes and dry shampoo, and feeling so fucking terrible for it being that way.

It's wanting to do everything and having the energy for almost nothing, and it's dread before you do something because you know what comes after - more pain and fatigue. I try not to let it suck all the joy out of my life but when you know you're going to pay for every good thing it can be wearying. It's sleeping all the time or hardly at all, and not making any difference because I still feel like shit either way. It's crushing fatigue which sometimes erases my optimism, but not always. It's making the most of the good days and beating myself up on the bad ones, and there are a lot of the latter. It's avoiding too much movement as that causes pain, and worrying this enforced sedentary lifestyle will be the death of me. A choice - exercise and be in agony or avoid it and be unfit. My breathing the last few months is terrible and I know this last big flare up I had - the one which lasted about 6 months - has seriously fucked up my fitness. I don't know if I have the fight to get it back, and I know if I can't arrest some of the damage my future is a scary place indeed.

It's missing out and knowing it, feeling bad for not being able to do much more than exist, knowing that any hopes or dreams I had for myself have vanished, and learning to live in the day to day as thoughts like that aren't good for my mental health. It's starting off each day with a massive deficit and always trying to play catch up but never quite getting there. Everything is tiring. Everything is hard. It's like jumping into a river wearing a heavy old woollen blanket and then wondering why it's so hard to swim with this massive weight you haven't got used to yet. You should know this impairment is there, but you still expect it to float away one day, but it just gets heavier, like your hope is making it worse. It's being physically (and sometimes mentally) impaired but still holding yourself up to the same standards you did your whole life, and constantly disappointing yourself.
 
Some days it's hard just to get out of bed, knowing the tasks the day holds are too much to think about, let alone do. And just when you're ready to give in or give up, a bittersweet day comes along. You sleep really well for the first time in months and wake up full of enthusiasm and pep. And then, only then, you remember how fucking hard it is the rest of the time, because when you're in this constant grind you don't know anything else, you can't see the wood for the trees. And you so want to run with this gift of a day, but you know what'll happen if you do. So even on the rare good days, they're actually not that good. They're just a reminder of what your life used to be like, like you sent a postcard into your future from a time when you were once well. Remember what it used to be like to work, old self? Remember the joy of long walks and dancing? Remember the excitement of getting up to a new day full of possibility, when your actions didn't have to be carefully weighed and measured for what they'll take out of you? When life wasn't a tally sheet which constantly shows a loss? Remember that? And then you do, and all is sadness.

I constantly wish I could do more, be more, and not have to expend so much energy to exist. It is what it is, and many lessons have been learned about myself and life itself, but sometimes I wish it wasn't quite so difficult. 

Gentle hugs to all the Spoonies out there.

Thanks for listening.

P.S. If I can haul myself out of bed whilst there's still sufficient daylight I'll be posting an outfit later.