Chronic Illness Grief

Lately I been a very grief stucken, feeling like I’m messing out on all the great things in life. While everyone else seems to be living their prefect life.

I’ll try and do all these things because I feel so sad at constantly laying in bed but then I regret it, because then comes the flare.

It started with the little things like not being able to go to the shops when they first reopened cause I was so super tired. Thankfully I did eventually go with my support worker.

I know not all of us can go I know, and I’m grateful I do have the little bit of energy to go, but if it wasn’t for my support workers I wouldn’t leave my house.

But some days they come and I really just want to jump back in bed because humans suck up so much of my energy, even though my support workers are their to help.

I miss just being able to hop on public transport and just go anywhere. These days I have to think really carefully about even catching an Uber anywhere, like it’s easier, but I still have to make sure to reserve energy as each day I feel like I wake up with less and less spoons. Trying to comprise on what one thing I don’t really need to do today, some days as bad as it sounds that is brushing my teeth.

Most of the time I just lay in bed at home hardly able to do anything, but message on my phone, sometimes I can’t even do that.

I went to youth group the other day because it started back in the office for a rotating schedule, it was our groups turn in the office. Only by the end of it I was in an immense amount of pain in my stomach and back and I nearly couldn’t get home.

Being stranded somewhere is one my biggest fears and one of the reasons why I try to stay home, out of fear of collapsing somewhere, or being so freaked out by sensory overload that I just want to crawl up into a ball.

Whilst everyone’s like, “oh joy! Beaches, sun and summer,” I’m in the bath trying to imagine what a beach is like.

So you say there’s zoom and that’s always good, no, not really. Not all the time. Sometimes I’m so tired my eyes literally hurt, so I skip things that are on zoom because it’ll just hurt my eyes even more and make me more tired.

Even just to enjoy a good book would be nice, it’s so hard to concentrate on anything. So I literally got a children’s book to read to help keep me entertained on the bad days. I’m not even sure it’ll help, my brain feels like a goldfish because my brain fog is that bad.

And while everyone is dreaming of being able to go overseas again I’m thinking, will I ever be able to do that again.

Even looking at people getting married I’m like wouldn’t that be nice to have the energy to manage a relationship and for dancing and walking down the aisle and saying my vows. Will that ever be me!

The bedroom is a pretty dull space to be all the time so I try to spice it up a bit, but I can’t even pleasure myself at times cause my arms get so sore, let alone have someone else around to pleasure.

Our bodies simply complain about everything.

Until you are here in our position you really take advantage of the things you as an ambled body person can do.

Wanna clean? Even just a single dish you ask? Maybe sometimes if your lucky.

Oh how I wish I could live in a clean environment, for just a day, but the fatigue is just so overbearing.

It may feel annoying and sad to miss out on all these things, thats what we call FOMO (fear of missing out) but let’s not dull on that. Let’s focus on the fact it is good to do self care and respect your boundaries.

I felt really sad writing this at first, but I don’t want to, so let’s put a spin on this awful condition once and for all and call it JOMO.

Joy of Missing Out. Because self care matters. You are important. You matter. You do not have to live to someone else’s expectations or even your own.

Please send this on to someone who needs to hear this. A friend. A brother. A sister. A mum. A dad. An aunt. An uncle. Make a difference in someone’s life today. Show them they are heard and it’s okay.