When Pain Doesn't Stop Coming

 I was admitted to the ER yet again on September 10, 2023, after attempting to deal with excruciating migraines for 4 straight days. It was incidentally discovered that I have a blocked sinus and the ENT specialist isn't able to identify the cause of the blockage - whether it's liquid, soft tissue or a tumor. And there is a big possibility that I may have to undergo surgery to diagnose the issue and treat it at the same time.

Truth be told, I shelved this discussion aside as it was just too much to deal with at that point in time. And to some extent, i'm still keeping this issue at an arm's length. I'm just so exhausted, and my migraines have not really left me as I'm still experiencing some residual migraine effects - fatigue, brain fog and eye pain. 

I felt rather defeated on Monday, when I went for my follow-up with the neuromedical team at HUKM. It seemed as though I was just another case presented in front of the doctor. There was little consideration to alleviate my struggle with pain, with the end suggestion being that I just go to the ER whenever my migraine strikes - that would just mean that I would be at the ER very often. 

Also, my request to be placed on welfare (OKU) was rejected by the specialist... due to my age. Even though I had explained that I am unable to work full-time and its a daily struggle to live "normally", the comment was that I am still young and should be able to find ways to support myself. 

That triggered my insecurities that I've been trying to work through - I would want nothing more than to be able to work as my peers do, but i'm limited due to my illness. The flippant remark about my age and the perceived ability to work more was deeply hurtful to me. Even having to acknowledge that I will require welfare assistance has been difficult. 

Sometimes, I just wish I could have a break from this. But I guess that's not realistic since chronic illness doesn't provide holidays from it. 

Triggers

 Breathlessness has been my enemy the past few months. Began in November 2022 and its just been present ever since. I feel insecure without my ventolin inhaler. Rightly so, as I started having coughing fits once out of the blue when my wheezing became a lot more intense and I didn't have the inhaler with me. 

My muscles and joints have been feeling weak and sore as well. Again, just living with pain constantly, though I try to not show the discomfort unless it's unbearable and I can't hide it anymore.

I got rather triggered last week when a friend responded that I "didn't look it", when I told her that my health has been sucky as usual but life goes on - which is true. It felt dismissive and invalidating. To which I just replied that I don't take pictures of me writhing in pain nor when I use my inhaler, and that my pain/discomfort tolerance is high. 

and it hit me - Why did I feel like I had to prove that I'm telling the truth? Do people expect to see evidence of me in pain (i.e. look like death)? I guess that's just people's preconceived notions of how illness should look like. 

For myself, it's recognizing my irritance but not letting me boil over. Giving myself time to feel frustrated but taking care not to hold on to it.