Health and Disability · Invisible illnesses · Personal · Positivity

Can you have fun when you have a chronic illness?

I’m currently lying on the sofa with no spoons left (it’s not even 4pm yet) but reading this article made me want to use what little energy I have writing this!
https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/
I’ve had a busy day today. Networking meeting this morning then I had a coffee with a friend before heading home as my parents came over to see me. I had to go out again to go to the chemist as I had a prescription to collect and the library to pick up some books that I’d ordered. I’ll put photos on my social media and talk about how much fun my day has been. I might put in a selfie of me smiling and looking happy, because I am happy! Look at my social media, Facebook, Twitter, Instagram and snapchat and there’s loads of happy, positive things there showing me going out for lunch, having coffee and cake with friends, cinema trips and having fun with my nieces and nephews. This is how I choose to portray my life. Other people might look at this and make assumptions about me and about my illness. They might think that I don’t look sick or that I shouldn’t be claiming benefits, or that I should be working when I am obviously out everyday and having a nice time. I’ve even had it mentioned to me that maybe I should tone down what I put online, aren’t I worried that the DWP will see it and it’ll affect my benefits? I have friends who use different names for their FB pages as they don’t want to be judged for what they do with their illnesses, and others who don’t post anything online as they think that it could affect things! This makes me mad! I’ve heard stories about benefits being stopped because of things that have been found online, and I am understanding of this as benefit frauds can be caught out in loads of ways and so they should be, but I am not worried! I will defend my life and what I post online to anyone…and these people will not be an important part of my life as my friends and family would never ask me to defend myself and my illness. People who I choose to spend time with and who are important to me understand that this is a snapshot of my life. That these are the joyful moments that I choose to share. That I do nice things and have fun to keep myself positive as well as being recommended by my health care team.

My occupational therapist said that I have to get up and get out everyday, even if it’s just to the corner shop, to give myself a structure to my day, to keep me motivated and get some personal interaction. My physio told me to get up and move about, to walk a little everyday and do the Pilates exercises she gave me every week. Massage and acupuncture are therapies not just relaxation and treats for me. I have audio books in my car as I catastrophise my life when I’m driving and mindfulness wasn’t working for me (I do not need to focus on my body as this makes me more aware of how painful everything is!) so focusing on an audio book is great for my mental health. My car also has heated seats which help with my pain levels in my hips and lower back so I love driving now!

It takes me about 2 hours to get ready in the mornings, I wake up at 8 and arrange “something” about 11am this is why I do a lot of lunches and coffee and cakes with friends and family. I get home about 2/3pm and then can’t do much else. By 4pm I’m neither use nor ornament! I ignore phone calls, don’t reply to text messages, don’t respond on social media and struggle to make food and household jobs are only for exceptional days. I’m in bed between 6 and 8pm depending on how tired I am. This is my life. 

The 11-3 times are great, apart from being constantly exhausted and struggling to focus on a conversation! I have a really nice time when I’m out, apart from when I have to swap chairs and annoy staff in cafes and restaurants as I need to try and manage my hip and back pain and can’t sit on certain seats. I love seeing my friends and family, apart from when I’m in so much pain that I can’t focus on what’s going on. I really enjoy taking out my nieces and nephews, but feel so guilty that I can’t see them more often or take them anywhere that involves more walking than I can manage, we’re limited to cinema and food (keeps kids happy but I’d love to take them to the park, a museum, the beach or soft play which I can’t manage anymore)

So yes, I do have a really nice life, between 11 and 3 most days and if you ignore the fatigue, pain and guilt that goes with me everywhere everyday.

I also have my own business and claim benefits. I’m allowed to do this! It’s all above board and it’s called permitted work. This lets me continue to build my business while I’m claiming ESA until it gets to a place where I can afford to support myself. I work between 5 and 10 hours a week at the minute and love what I do and really look forward to being able to support myself eventually, but I’m not in that position at the minute, so all my “work” posts are there to promote my business and help me long term.

I’m happy and I do lots of nice things. I claim benefits and I work. I have a chronic illness and I am allowed to have a life.

I do not have to justify myself to anyone and I should not have to explain myself either. Tomorrow I’ll be going to the wedding reception of my good friends and I’m going to dance with their 5 year old son because I promised him last time I saw him. I’ll probably have to leave early and I’ll probably be knackered on Saturday but I’ve got a stall at a charity fun day so I’m going to put on my happy face and get help from my friends to get through the day. I’ll have a great time doing both of these things and I’ll post them on Facebook and people can comment and think whatever they like. This is my justification post. This is me explaining how my life actually is and how what you see is a very small portion of it. When I’m at home I’m by myself. No one sees what I’m like then and I’ll share that with whoever I want to, when I want to. Right at this moment I’m wondering how I’m going to get myself some food, I don’t think the salad I was planning on is going to happen, and a frozen fish pie and veg might be too much as well, the washing is staying on the clothes horse and the washing up isn’t getting done, a shower is not being had and my hair is not getting washed. I might turn up at my friend’s wedding stinky and greasy but I’ll be there to dance with Daniel 😃👫💃 and if anyone wants to judge me for that then go ahead, but just think, would you want to be judged on a snapshot of your life? Does that say everything about you? Is that the entirety of your life, your challenges and your joys? If you have a chronic illness or disability which means you can’t work does that mean you have to stay home all the time and be miserable? Just a have a think before you judge others because none of us has any idea what other people are going through unless they choose to share that with us. 

Just choose to be kind to each other.

Vic X 

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