It can be a challenge. Having a chronic illness.
You don’t know what you’re going to be like or how you’re gonna feel day in, day out.
You feel like your condition controls you and you feel out of your depth at times.
You sometimes feel lonely.
When you start feeling like you have control, your condition flares up. This basically feels like, to me, my condition is saying “haha you thought you were in control and getting on with your life but you thought wrong”.
I’ve felt like this lately. I’ve had a procedure undertaken involving replacing my peg tube with a different size which had to be done under x-ray in hospital. It wasn’t a pleasant experience and was quite scary. (I’ll explain further in my next post).
The reason I had it done was because my previous tube was leaking excessively and causing me discomfort. I had to fight and speak to many doctors, consultants and nurses to request a new tube which was tiring.
I knew the other tube was the issue therefore why I needed a different size.
That’s another thing about having a chronic illness. The constant fighting to get what you need. The repeating of hospital visits and treatments.
The feeling of a hospital procedure or treatment not working.. again.
It’s frustrating and upsetting as all you want to do is get on with your life.
I’ve struggled lately. The new tube I’ve had inserted (which was a pain to insert… literally) so far seems to be better than the other tube but It’s still early days and I’m worried its not going to work. I’ve had procedures and treatments in the past where there have been promises that this will work, but then it doesn’t. And I’m so used to that now I feel like I have lost hope.
I don’t see the point in requesting treatments or hospital procedures any more because I know the outcome.
There’s nothing out there that will change the fact I’ve got a chronic illness. I’ve just got to live with it.
And that does effect me mentally. I may not show it all the time but I am mentally and physically drained.
The thing is part of me feels I should be used to it as I’ve been in and out of hospital and had an illness all my life. But you don’t get used to it.
It’s a battle I’ll never win, so I’ve just got to hold tight and ride it.
It’s part of me and I can’t do anything about it.
The strength within me to carry on and fight is still there. It just hides from time to time.
I’ve been taught to think that someone always has it worse and to be grateful that it isn’t worse. But lately I’ve been thinking that it’s okay to have moments where you are unhappy. As below says, if things are bad for you, things are bad. I shouldn’t feel guilty for feeling the way I do. My trauma is valid.
As long as I don’t give up in life, it’s okay to feel this way. Things are tough for me occasionally. But I’m allowed to think “why me”.
Katie's Journey 