These days I still need to pace myself. I have a new set of limitations that I have to listen to and I still have my bad days they just don't come as often. So just because I'm heading towards remission it doesn't mean that I don't have in the back of my mind that if I overdo it that I could crash really hard. It's a constant struggle between I really want to do something and what will the cost be later and I really want to do something so I'm just going to do it anyway no matter the cost. It's not something that I always talk about but it is an automatic conversation I have in my mind. Should I do this, how will I feel afterwards and is it really worth whatever consequences that could happen. Welcome to the life of a chronic lyme disease patient.
Sunday, September 11, 2016
Thursday, September 8, 2016
I'm not fine. I worry everyday that I will be told I'm going through menopause and have cancer.
I'm not fine and give everyone everything. And I left with nothing but feeling drained. I'm not fine I feel numb, lost, exhausted, sad, alone.
I'm not fine I feel like I have no meaning. And if I was gone no one would notice. Only thing they would miss for a fleeting moment is what I did for them only. But they would never miss me. I'm just used and disposable. Just like a plastic red cup.
I am not fine the physical pain is always there in some form but it never stops ever.
I am not fine I don't feel rested, I feel like I'm watching myself trying to live a life but why does it have to be so fucking hard.
I am not fine I just want to be alone in my dark place. It's the only familiar place I know only too well.
I am not fine the anxiety, depression, brain fog, muscle spasms, eye fog I hate it. Just because I move everyday doesn't mean I'm fine.
I am not fine I'm sick of the psoriasis, itchy crawly skin, medical bills, a couple of good days then bad days. Why can't they all be good.
I am not fine and I'm sick of the everyday fucking struggle to just get up and live.
I'd rather be fine than chronically sick everyday of the week, year after year. I would trade anything I have to not be her. The one that has to say she's fine but never is.
If I have to say one more fucking time that I'm fine I will rip out my hair.
Because I'm not fine.
I will never be fine.
And no one including me can change that.
I am not fine at all.
Stop telling me, fixing me, giving me band aides, advice, sayings, poor yous,
Cause guess what, I am not fine!!!
And there's no pill to fix this.
I am not fine. I feel like I dying from the inside out on every level.
Would you be fine with that?
Thursday, February 18, 2016
I think we all get to this concentrated and clogged point where we stop talking and go inward. We escape to the inner self to heal. We run within hoping we can get skip the storm of pain and emptiness. We try to decorate our inner homes with positive memories we hold to, holding them close reminding ourselves good things still happen on the outside just not right now and we hold on some more. We extend hope a few more lengths. The problem becomes when we live in our inner homes to the point we never come out. Where we don't trust outsiders with white coats, or friends who say they care. It's becomes our only world. Our only internal existence. there are many days of pain, depression and anxiety that I endured on a couch or laying on a bed exscaping to my inner world replaying old memories, thoughts, good and bad, replaying songs or old movies. It was bits and pieces jumbled up together. I know this may not make sense to some but I can get lost in my mind for hours or days to escape pain. Especially the deep seeded bone pain, heart wrenching, teeth curling body and joint pain, migraines and knots of muscles and tendons mashed together in a solid mass. It makes sense that anyone would want to find a way out. Anyone would want to find an escape route. Anyone would search for an end. So often we meet people who seem like they are a walking Zombie, not connected or interacting. They may seem aloof, depressed, angry or even mean with scowls on their faces. But what are they escaping? Stress, pain, loss,... We often stay away when someone acts like this not knowing what to do. I have no magic potion or formula.
I can just say, Listen. Be around, be available, be open, be kind, and just listen. Because when someone feels you're genuine they will come out of their inner world in time as they see you are trustworthy and reliable. That you are like everyone else who sizes them up in one look or assumes myths. You're just there to listen nothing more and nothing less. I heard a quote say once "are you listening to reply or are you listening to the person". We inner worldly beings know the difference because we people watch for entertainment but also to protect ourselves. We are always on high alert. I can always tell when someone is really listening to me as a person and when they're doing it out of duty or to look good or because that's what you're suppose to do. Just be honest and real. It always shines through.
Sunday, February 7, 2016
Saturday, January 9, 2016
As a long term, late stage Lyme Disease patient over the past 9 years I have had one constant symptom for most of my life, photosensitivity. It's rare you find me without sunglasses on my face or head. Whether it's rain, snow, sleet, cloudy or sunshine, my sunglasses are on inside my house, stores or outside. I so often see people wondering why the heck I am wearing sunglasses inside a store. People stare, make comments to a friend or give me strange looks. No I'm not trying to look cool or pretend I'm a celebrity. I live in Maine not California. But I'm doing my best to get through a store with fluorescent lighting, noise, crowds, strong smells, and narrow aisles. I'm doing my best to cope with all that input. The sensory overload can be overwhelming, embarrassing and down right frustrating to someone like myself with chronic illness. It feels like a full body assault and I'm doing my best to cope. Sometimes if I can block out the bright lights I can kind of cope a little better with all the other input, remember why the hell in in the store, get my items and hopefully quickly get out of there. I often like to wear my sunglasses with my ear spuds in, listening to calming music. Sometimes I need that combo to help me focus better. I'd rather wear my sunglasses than go home dizzy with a headache, migraine, exhaustion, full body pain, and fog brain. Could you imagine that something as simple as light could tax you're body to the point where either you avoid the stores or go in with anxiety hoping you can handle it and wondering how you will feel after? Invisible chronic illness is unpredictable, flares, and down right limiting. So if you see someone inside a store with a hat, sunglasses, listening to music, unable to process the moment please be extra kind. That person is working extra hard just to do something so basic and so needed. They are using up all their spoons just to get items and go home and be toasted for the rest of the day. A store is dreaded already, the looks by others avoided, anxiety high, a person in this state doesn't needed any added stress. Just kind understanding. So instead of staring or wondering why, just know that person wearing sunglasses inside on a rainy day is doing the best they can, with what they have, where they are. It's an adaptive device helping them cope and survive.