#lupusfighter

Life is an adventure, and with lupus I’m finding it’s more spontaneous… it is difficult to commit to plans as I genuinely don’t know if I will be able to achieve them. This is really hard for me as I like making plans and being organised. I also don’t want to let people down and be a ‘sick note’ or a ‘bailed’.

Yesterday i had a conversation with someone who was explaining their neighbours experience of having lupus and, he just got it- and to hear someone talk with understanding about how you are feeling and your days to day life was really uplifting. Ta C.

It made such a difference, I find I explain myself a lot and I don’t want it to sound like I’m moaning or being negative - it’s frustrating to me folk don’t get it at times. I guess you can’t truly understand what someone is going through until you walk in their shoes.

Sometimes I can climb mountains ⛰, sometimes just climbing in and out of the bath into the shower is enough, some days my head is clear like a summers day, others it’s unrelenting fog. When I get tired and my energy is spent- there is no back up. Every day I feel sick- it’s why I eat so regularly as I find it eases the nausea but sometimes even eating is hard. I get chest pains if do too much, and it feels like I have a small child sat on my chest all the time- but I still walk and occasionally run (though not always the best idea).

But I am trying all the time to live my life as normal, and I won’t stop it doing what I want to but I do have to be sensible about what I can achieve and what is safe. I know there’s things I factually can’t do as the are restrictions in place, there are things I can do but now more risky, and there are things I do everyday which are just a bit slower/ take longer/ bit harder now.

But some days I am on fire 🔥 and I may be able to achieve everything I used to- and I’m hoping with the right medications and alternative therapies I can kick it into remission so these days become more frequent.

Because of you, I have to lie. Have to pretend I'm fine.

You've helped me to identify, to find my kind. But why?

Something I wonder every day. The price I have to pay

simply to be me. Don't you care? Can't you see?

I'm not one to cry out, "Why ME?" —not specifically.

I know that I do know the why. Your wings; they've helped me fly.

But it's always half truth and half bullshit.

Sometimes it overcomes, and I can't handle it.

You know me well so I've not much more to say but

there are times I wish you two would fly away.

But, I know you'll forever stay. Grow more attached.

Leaving me dog sick, nerves wracked.

The only alternative is death.

And I'm here. Here for each and every breath.

My future is now and that is where I shall live.