Life as an author/person with chronic illness- Please don’t give up on us.
A big howdy and hello to you all. Thank you for stopping by 😊
This will just be a short post today, so let us get on it.
As a person with Chronic Illness, every day can challenge you. You can never be sure what is going to happen health wise in any moment. You might have a ‘good day’ and be feeling okay and on the opposite end of the scale, you could feel absolutely horrid and might feel like you are about to die (it does happen and it is not a nice feeling).
Chronic Illness is so unpredictable; it fluctuates so much that it is hard to plan anything more than getting up and going to the kitchen to make a cup of tea, and some days that is too much.
You get your legs off the edge of the bed and then just sit there; because you cannot stand up but you cannot get back into bed either.
I personally tend to not plan much in advance. I am often asked to go out somewhere, to attend an event or to help with something. I usually (and I feel bad for saying it) have to say, ‘It depends how I feel’ or ‘No promises but I will try’.
I am blessed to be surrounded by supportive people who do not make me feel bad about having to do this. They are understanding when I need to cancel things at the last minute. (Thank you all, you know who you are and I love you all).
Why must I do things this way? Can't I just force myself?
It is a personal choice. I could just say yes to things, plan things in advance and then cancel when necessary; but I don’t like cancelling on people. I don’t like to let people down, and would much rather tell them straight away so they do not plan for me when I am likely not to show up. I admit, I also try to save myself some embarrassment when decided how to answer someone.
It can be so frustrating. Not only feeling unwell, but at the same time feeling like you are letting people down. The mind is a powerful instrument and sometimes you feel like you have say no so often, that one day soon; they are going to just give up on you completely.
When a trip to the supermarket or movies can go pear shaped easily (vomiting, pain and whatever else your body decided to throw at you) it is hard to convince yourself that it is worth feeling horrid AND making others feel bad.
The last time I sat in the car outside the supermarket (instead of being inside getting my groceries) with my head in a vomit bag; I really thought my body hates me and does it just to spite me. I was so angry, but was vomiting so hard that I did not have time to even curse at myself or the universe (though that does happen some days).
Of course, my body is not on a mission to embarrass me. My body does not sit at night, writing down ideas on how to make me feel horrible. My body is sick. Instead of only fighting off the bad things (bugs etc), my body gets confused and fights the good stuff and itself instead; including muscles, bones, skin and organs. My body turns on itself and it can be unrelenting some days.
I am so lucky that my friends have stuck by me and still ask me to do things with them.
One thing I want to ask of everybody; is that if you know someone who has disability/chronic illness or other health troubles - Please don’t give up on them.
They feel bad for cancelling on you. They feel bad for not being able to plan too far ahead and they are already kicking themselves for being unwell, as well as dealing with whatever symptoms are troubling them at that time.
When you ask a person with chronic illness to do something and they are not up to it or they cancel just before the event, check if they need anything. Ask if you can come over and say hello, bring a cup of coffee or be supportive in whatever way you can. When feeling unwell; is the time a person needs friends the most.
Chronic Illness can make you feel very alone.
Still invite us to do things or go places, even when you know we might not be able to go.
Even if we have had to say no to the last five coffees or the last two outings.
It makes us feel included and cared for. Chances are we are sitting at home, feeling awful because of pain or (insert other symptom) but also feeling awful because our body just forced us to politely bow out, yet again. We did want to spend time with you, it is just so hard sometimes.
We appreciate your support and you asking us and trust me; we will do our very best to make it when we can.
So, that is my thoughts for this morning and also a polite plea to everybody. Please don't give up on us and thank you for supporting us and sticking around <3
I have spoken to many other people with Chronic illness and although many of them have shared these same thoughts with me; they are not all able to say it. I have this platform and I want to use it for good. I want to bring awareness to important issues, and what better place to start.
Thank you so much for sticking with me so far. I hope that this information will help somebody. I would also love to hear other people's thoughts on the subject and welcome messages via the comments on this blog or via my contact form.
For now, I will log off. I am having an okay day pain wise and want to get some things done while I can 😊
Much love to you all. Stay safe and feel free to share the blog post x x
If you have experiences you would like to share, flick me a message and I will reply when I can.
Bye for now