Now this is something I never thought about, I never thought I would have a Chronic Illness but here I am. The saying “Unless you have it you can’t understand” is true when it comes to Chronic Illnesses. When people ask me and I explain what it is like they either look shocked or give the sympathy look. The worst part is, it is a invisible illness to other people. You look at me and wouldn’t know unless you know me properly but my life has changed.
I wake up every morning always having a crap nights sleep. I can’t remember the last night I slept well or the last time I woke up feeling refreshed. I sometimes sit on my bed and try to remember the last day I wasn’t in pain and I can’t. I can’t remember what it is like to not be in pain. I realise I took the old days for granted. There are different types of Chronic Illnesses and I am only talking from how I am and what I experience. I guess I am writing this to get it out of my system but also for people to try and understand.
My every day life is being in pain 24/7 and no I am not exaggerating. The pain levels can be different everyday but the pain is always there. The pain can be in different areas of my body. It can be all over but then my arms could be worse or my legs or hips or hands. I struggle to walk far, I can’t go to certain places or if I do push myself it puts me in agony for days. On a good day I wake up, struggle to get out of my bed due to the pain, get ready slowly and try to go about my day. I often sit when doing my makeup and look in the mirror and just stare at myself, it’s like i’m not me anymore, I feel like part of me has disappeared.
Before I was diagnosed my family thought I was being lazy or difficult because I would say I can’t do something as simple as make a brew round but the truth is I physically couldn’t lift the kettle because the pain was so bad in my arms. If they tapped me or poked me it would hurt so much it would send pain throughout my body like someone had punched me. The pain wouldn’t last minutes it would last all day or more. If I carry a bag the weight feels like I am carrying bricks, luckily my partner is amazing and always carries things for me.They always thought I was being a drama queen but I would be in tears. I finally got diagnosed and I realised there was something wrong. My family try to understand but it’s hard.
People think because I don’t constantly say I’m in pain that, that means im ok and fine. I hate it when someone says “Oh but you look ok”. I feel like alot of people think its not real because you can’t see it. You can’t see it but I feel it all the time. I often sit on the sofa or lay in bed and want to scream or cry and just shout piss off go away why me. I would do anything to have one day with no pain. I am on medication which the dosage has changed quite a few times but it seems ok now. Medication doesn’t stop the pain, it is to help reduce the amount of extreme bad days and maintain everything.
When my bad days are there which is often I struggle to do basic things. My hands often freeze and I drop things. I have dropped a boiled kettle which scares me as I get scared one day I will hurt myself. There have been days where I struggle to put one leg in front of the other to walk and can’t do anything. Some days I can’t lift my arms, the pain is excruciating. I can lay in bed at night on my own and cry. I try to be strong. I always have been since going through things when I was younger and then having reconstruction surgery on my leg and then surgery on my neck but then being told I have a Chronic Illness was hard. I struggle to be positive. I wish my family could realise just how much it drags me down and how much pain I am actually in. Some days I smile but it is fake, I do it to make them think I am ok and strong when really I’m not.
At the age of 26 I never thought I would be restricted on what I can do. I worry if I fall what it will do as I have my chronic pain but also my leg from surgery. I feel like a 90 year old and I often wonder why is my partner with me. I feel I drag people down and ruin things for them. I can’t go on days out doing certain things and feel as if I hold people back and that I get in the way. My partner is honestly my world, I don’t tell him enough how much I appreciate everything he does for me. I know he finds it hard to understand sometimes and he forgets but he is always there for me no matter what. I’m not exactly easy to deal with.
It is a very lonely stage of my life for me.
Yes I work, I struggle alot, Yes I exercise as it is supposed to help but I do the basics and often end up in pain. You can’t win but one thing I won’t do is give up. I have gone through so much shit just like everyone else but I this won’t ruin who I am, I won’t let it.
I wanted to do this as it is true feelings and something I needed to get off my chest but also for people who don’t understand what a Chronic Illness is and to raise awareness. I don’t want sympathy I just want people to understand. It’s true you only show the good parts of life on social media, I never post the days I look horrid, covered in heat patches, curled up in bed struggling to move.
I wish I had someone who had a Chronic Illness that understands what I’m going through so I could talk to them or support each other. Writing this post was hard and I feel vulnerable putting it out there but it is a part of me and my blog is mine.