Before anyone suggests it, this is not a cry for attention. It’s just an expression of how I feel at the moment. Only those of you who have a chronic illness or care for someone with one will get this. The title “Pity party for one” is a complete piss take. I don’t want a pity party, I want a break from everything that is going on at the moment.
It’s difficult to come up with a blog post when all you have faced over the last few weeks is a ramping up of your joint pain and unbelievably bad health (more than normal). I don’t mind joint pain when I have partaken in activities that warrant it. That’s pay back and its normal – for me. It’s when all you have done during the day is move from your bed to the sofa and back again, it really starts sucking all the joy from your life.
I have been in tears or close to them for a few days. This new level of pain has brought me down, I have upped my dose of painkillers but it doesn’t do anything much or it takes all day before I feel any relief. When the pain is bad I am convinced I am depressed, when it eases off I know it is the joint pain that is so badly affecting my mood that I want to go to sleep and not wake up to face another day of pain. That is how bad it is getting and I have no idea why. I don’t want to die or do anything stupid. This is not a cry for help. This is the sheer level of frustration you feel when you are on a runaway pain train. You do not know how you will possibly get through the next hour let alone the other 23, only to face it again, day after day.
You get through it, you don’t know how but you do. The exhaustion leaves you feeling like a zombie and wipes out any reserves you may have had. I don’t know how my body still functions but it does. I know at some point I will get back on top of the pain. I just don’t know how or when. I am sick of waiting.
I can live with a certain level of pain. I have had to, I spent from 1999 to 2011 without medication because I couldn’t get anyone to believe how awful the pain was. I have been on top of it for a few years with the occasional flare up. This pain flare up has building for a few weeks. Its changed from the constant aching to a sharp pain that is unrelenting. I can only describe it as feeling like my knees and hips have been replaced with metal spikes. Every movement feels like the metal spike is rubbing along the bone beside it. Today every time my right foot went to the floor I wanted to cry. I hate using walking aides in the house as they are so very limiting – you can’t carry anything when you use a stick, frame or crutches. I tend to use the furniture to help me hobble around. I seriously considered using my crutches, for me to even say that out loud means I am in a considerable amount of pain.
However I am conscious that I need to keep moving. One of the things you do when you are in pain is limit your movement, its only natural to stop doing something that hurts. With EDS we need to keep moving as much as we can, as not using a joint could mean in the long-term more problems. It’s hard to keep that in your head when you want to scream every time you put your foot to the floor.
I am not looking for sympathy, I am just giving you a peek into my life. Its the bits no one sees because I wont let them. I hate feeling this miserable, I hate the pity party I am currently throwing myself, it just isn’t the real me. It wears you down, exhausts you and causes you to draw into yourself rather than live in the real world. I am at times too exhausted by it all to speak.
You would never know if you saw me in person. I am good at hiding it in plain sight. I can keep a fake smile plastered on my face for a couple of hours. I can keep a light and breezy conversation going whilst my vision goes grey as my blood pressure drops. I have become so good at hiding the sick me, I sometimes doubt how ill I am myself. Then reality strikes, as on Sunday when I lost the ability to urinate again. Thankfully for some reason I could place the catheter when all attempts on previous days had failed. Its only when bits of me stop working properly that I have to acknowledge that life is not normal. I am left asking myself how did I get here? What happened in 2007 to change the course of my life so dramatically? I have no answers.
The only person that ever sees my struggle is my husband. I would be lost without him. He is the only thing that keeps me going at the moment, well him, the dogs, my parents, my sister and her family. I am struggling underneath the weight of this pain. If I could just get some relief just for a few hours I would feel like me again. I wouldn’t have to wear this mask that I hide behind for fear of people seeing how weak and vulnerable I am.
I am sorry if this post seems negative. It’s not meant to be, it’s a picture of what life can be like when you are chronically sick and trapped within your house because the pain and stimulation of the world outside is just too much for you. I rarely feel as low as I have for the last few days. I know at some point I will catch a break and I will feel better – better than I do right now. It will happen, it always does, that is what I cling too.
“This too shall pass”
the myasthenia kid 
Don’t apologize for a post that is true to what you live through. So happy you have your husband and hope that you get a bit of a break soon. Living in chronic pain and silence about it is so exhausting.x
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Hi Bee,
Thank you.
Thank you for taking the time to read and comment on my blog as you know its always appreciated.
Pain is isolating, debilitating and exhausting. I am lucky that I have a supportive husband, family and friends. I know that many people are not as lucky as me.
Rach xx
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Please don’t apologize. I totally understand every word you said. I know what you mean about writing a positive or happy post. My life is rarely happy, therefore it can’t be positive, but I, like you, .want to share my journey with the world. I’ve met many friends here. We support one another. Just wanted to let you know that I am here and if you want to go read my latest post, you’ll see what I mean. I get it. I’m here if you ever want to talk or vent or whatever. I am already walking the journey with several others like us. You are welcome to walk the journey with the rest of us. Starting my blog and actually sticking with it for just over 2 years, now, has been very therapeutic for me. I look forward to talking to you some more. I’ve been pretty sick and haven’t been able to post as regularly as I would like to, but such is life. I did just post one yesterday, finally. Take care. I wish you the best on your journey. 🙂
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Hi,
Thank you for reading and taking the time to comment on my blog it is very much appreciated.
I have received many comments over different mediums regarding this post and all of them identified with it in some way. It is nice to know that I am not alone in the way I feel. It is just awful that so many of us feel that way.
Thank you for you kind offer of a listening ear, you never know you maybe unlucky enough for me to take you up on it!
I look forward to having a read of your blog and getting to know you.
Thanks again
Rachel
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Sigh…………………..I just went to “Post comment” and BOOM, it’s gone. Okay, breathe………….As I was saying, I would consider myself rather lucky to hear from you, again. That’s what I do. I want this to be my legacy. We all need someone to talk to or vent to, whatever it is we need to do. I tend to do it often, because my life pretty much sucks most days. I’m not even going to get out of bed today. I’m in too much pain and haven’t been sleeping much. I’m very anxious and scared. I have some serious medical concerns that I’m going to be forced to deal with in a few days. I’m terrified, would be an understatement, but I will make it through this day, as I live day to day, and sometimes even breath to breath. My friends here will help get me through this, like they always do. That’s what we do here. I would be more than happy to talk to you and to listen. I also, have a shoulder to lend when needed. I hope you have a “decent” day. I look forward to getting to know you, as well. I’ll be here whenever you are ready and even when you’re not! LOL Yes, I like to think I’m quite the comedian sometimes, so just ignore me if you don’t think I’m funny and skip to the serious business of the day or whatever it is you/we need to do to help one another on this difficult journey referred to as LIFE. I hope you can have a decent day. I hope I can too. It is possible even when not getting out of bed. I’m devoting today to my blog and reading other’s blogs because I’ve been M.I.A. for awhile, just trying to get my head on straight. I look forward to getting to know you, as well. I am also looking forward to getting back to writing on my blog on a more regular basis, again. Have a nice day. Sending you some “good, healing energy.” A very good friend of mine in Australia sent me a ton last night, and I’m going to share it with you. Hang in there, Rachel, you are strong and you can do this. By the way, what a beautiful name, Rachel. That’s my oldest daughter’s name and it’s spelled the same way. The “old fashioned way.” The original way. Peace out. I’ll be right here when you feel up to it. 🙂
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I tried to contact you, i,m not a scammer my email/internet has gone v wrong, got a man cmg to fix next week when i will contact u properly hopefully. Am in Devon also and simaler to yr circs.
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Elaine,
I have emailed you you haven’t responded.
I have checked your IP address last week it came from Iceland, today’s IP address comes from Norway. Something is indeed going very wrong with your internet.
Contact me when you have it sorted. I do not give out my phone number on the internet, so until then I am unable to help you.
Rach
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