Tuesday, 30 January 2018

What I Wish My Friends Knew

Living with a chronic condition is tough work, and it can be really difficult to explain to someone who doesn't have one, or hasn't been around someone who does have one, just how much it effects every aspect of your life. I wanted to write this post to tell my friends a few things I wish they knew and understood about me and my condition. 

I wish you knew that when I say I'm tired, I've gone way beyond just feeling sleepy. I NEED to sleep, I'm exhausted, I'm struggling to function. When you say back 'yeah I'm tired too' it's honestly not the same. It's like body melting fatigue.

I wish you knew that when I cancel on you at the last minute I had every intention of coming, but when it came to when I had to leave I just wasn't able to come. My body decided for me that day. I don't want you to stop inviting me to things, all i want it to be able to come to them.

I wish you knew that most of the time I struggle talking about my condition. I feel like I talk about it too much and I don't want to lumber you with my worries. I don't want you to get bored of hearing me talk about it. 

I wish you knew that I still mourn my pre-arthritis life. I miss working in buying, I miss really using my degree and I miss the full independence I had. 

I wish you knew that I don't know how to answer you when you say 'hope you feel better soon', I know it's from a place of kindness, but I also know that I'll have this condition forever. 

I wish you knew that some days the pain in my hands and fingers is so bad that I can barely lift anything up. Glasses, mugs even my phone I struggle holding. So if I don't message you back that day it's probably because my day hasn't been easy. 

I wish you knew that every time I start a new medication I'm petrified. Of the side effects, If it will or will not work, If the doctors/rheumatologists/specialists will monitor it properly. 

I wish you knew that I miss out on a lot and I get major FOMO when I see you doing things I wish I could do. I miss out on parties, events, general fun things all because my body aches so much some days that I cry in pain even trying to get out of bed. 

I wish you knew that I've tried so hard over the past few years to make blogging my career but I still struggle with any form of routine. I can never predict how my body is going to cope or how it might change throughout the day so forming any kind of working routine is extremely challenging.

I wish you knew that I will sometimes have special requirements. Dietary requirements due to my medications, spacial requirements if I have to use my crutches, and 99% of the time I need somewhere comfortable to sit, as my pain can worsen quickly if I'm uncomfortable.

I wish you knew how much full days of work or even social events take it out of me. If I have to travel, spend time walking or standing for too long I'm usually exhausted by the end of the day. Please be gentle with me and know that when I say I'm struggling, I've reached my limit. 

I wish you knew that I take 8 different medications. 1 I inject per week, 1 I inject per month and the others orally. I have regular steroid injections, I have my blood tested every fortnight and there are specific things I cannot do due to the medications I take. For example- I can't be in the sun due to the high risk of skin cancer as my immune system is so weak. Each of these medications have side effects so please bare with me.

I wish you knew that in the photos for this blog post I was in agony. I had been going through a flare up for the past few days and couldn't move my toes at all. My fingers could barely bend, and I couldn't move from the spot I was standing on - that's why all of the images are of me in the same place.

Lastly, I wish you knew how much I appreciate it when you check in on me, make me laugh or smile or just let me know you're there. Having a chronic condition can be really isolating, so I hope you know that I appreciate you. Thank you Gracie for the inspiration for this post and for inspiring me to raise awareness and understanding of invisible conditions. You're the best.

Fit notes
Dress: Size up, especially if you have a big bust.
Blazer: As above

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*Items in this post were kindly gifted to me, however all opinions are my own.
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