Last week was the worst of my life. The hole in the roof of my mouth got bigger. It took away my ability to speak and be understood clearly, restricted my diet and fluid intake and made taking medications challenging.
It sent my mood very low. Apart from attending a coupe of medical appointments, I slept. Day and night. That’s all I did. The situation felt overwhelming.
Its taken me a week to figure it out. I’ve been stressing and worrying about things that I have no control over. It reminded of this page in The Alcohol Therapy Workbook:
So I am re-focusing on what I can control: me. My thoughts and behaviours.
In a month, the hole in the roof of my mouth has doubled in size. The NHS has lost my Max Fax referral and it is now affecting my ability to speak and in being understood.
It has already affected my diet and fluid intake, causing me to loose weight.
So I had no choice but to go to my local A&E Department and request another Max Fax referral. It was so fustrating the staff not understanding me when I tried to explain myself. The only way I can be understood clearly is with yes and no answers.
Vasculitis continues to get me down and I’m still waiting to start on the treatment fot it.
Loss leads to a grieving process. I feel like my vasculitis diagnosis and accompanying symptoms have led to a loss of a quality of life, as well as a shorter life expectancy than I had expected. So I’m currently grieving.
I’ve done the denial and shock stages of grief, but am currently struggling with the anger and depression stages.
Anger is a weird one. I’m not angry at a person or God, but I’m angry with the whole way this universe works. It feels unfair and even though I know logically that life isn’t always fair, I’m still angry about it. Anger isn’t something I experience often and it is one of those feelings that for me is uncomfortable. I’m rarely ever angry so my resilence to tolerating this emotion is quite low, as are my coping strategies for dealing with it.
Depression on the other hand is bunch of feelings that I’m far too familiar with due to having bipolar. Hoplessness, a lack of joy, physical/mental exhaustion, I could go on, but I won’t.
These feelings of anger and depression are a normal part of the grieving process. I know that. But it doesn’t make them any easier to deal with. I’m struggling to cope, so I’ve referred myself for some counselling. I know there’s really no solution to these feelings, they are not a problem or a puzzle to be solved, they have to be experienced, in order to move on to the acceptance stage.
Right now I’m focusing on being patient and kind to everyone – including myself, so that I don’t inflict any harm on anyone because of how I am feeling.
I am acutely aware that my last few blog posts haven’t been positive. But I suppose that’s to be expected when you’re grieving.
My Vasculitis is rapidly getting worse. I now have a hole in the roof of my mouth (hard palate) up through to my nose. It is causing me difficulties with drinking, fluids coming out my nose.
This Vasculitis is really doing a number on my nose, mouth and possibly eyes. Not great news. Feeling down about it.
Best Wishes,
Antony x-x-x
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Sunday 9 June 2024
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Antony Simpson - Author, Blogger, Nurse & Witch.
Author of eight books.
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