Friday, June 06, 2025

not knowing and knowing

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 There is an odd pressure attached to knowing a maybe date and really knowing, so it can become as close to definite as possible. |It got to...
Tuesday, June 03, 2025

arm

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Today I felt a strange sensation in my arm. The left one. Different to the recent fuzzy feeling. This was more like a dull ache - this was s...
Saturday, May 24, 2025

I don't know

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If he loves me. I'm not even sure if he likes me right now. There's a small distain in his interaction that makes me wonder.  Don...
Sunday, May 18, 2025

fear is normal

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 Today I cried before I went to skate, to hit and use my body the way it currently can. Today I wondered when I would return after the next ...
Friday, May 02, 2025

holding on

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The difference of having this when your young is the people you've collected they are great but can't know.  Now I'm able to hol...
Wednesday, April 30, 2025

3 months

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Not even all of that.  And how do you prepare for maybe not bring and to walk again, or use your arms or become incontinent or all the thing...
Friday, April 11, 2025

gratitude

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My daughter was in a mood yesterday, understandable but irritating all the same. I'm pleased to know that the fog of my pain isn't e...
Thursday, April 10, 2025

Talking to my mum

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 I didn't know how to say all the things, for fear of it all feeling too sad, but I got to say some of the things.  The things I did say...
Monday, April 07, 2025

Crisis

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Reclaiming my VHL status and making something of it I decided, many years ago, that my derby name would be cortisol crisis.  Yesterday while...
Sunday, March 30, 2025

Click Click

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 A while ago I began to get a click in my neck, loud through my ears from time to time, it was a new and satisfying sound. Now I'm wonde...
Saturday, March 29, 2025

Am I breathing

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To know your body and to really know your body are different. I'm sure I fluctuate.  Since the news I'm mostly thinking about my bre...
Friday, March 28, 2025

Head in a box

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I knew that eventually this one would need to come out. I expected it but I didn't think it would be now. I hoped I had longer.  And now...
Thursday, March 27, 2025

nerves

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I hadn't realised that I was feeling nervous but of course I am. Every year, sometimes more often. Each time. Getting ready to put on a ...
Tuesday, March 25, 2025

reunion

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It started with a LinkedIn message and my caution. Then trust we talked and laughed. I felt like the 20 something I once was. He remembers m...
Tuesday, March 11, 2025

There is always spring

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There is a lightness in March, a month that all those years ago was my brother going in for his first and straight forward, VHL related oper...
Thursday, February 20, 2025

feeling things

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Today I've mostly felt a little small and sad. A strange mix of emotions over the week and I'm not sure where to put the feelings.  ...
Saturday, February 01, 2025

Daren had left the chat

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I was scrolling through my phone today. Looking to distract myself and then I saw it.  The chat I set up to update people on my kidneys.  An...
Tuesday, January 21, 2025

if Trump is right...

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And god saved him... Then I think we will have to admit that the ancient Greeks had it right and the gods see us as play things. They will f...
Monday, January 06, 2025

Fear of a mother

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 As I talked to my mum on facetime last night I saw the fear she feels for me. This was linked to me saying I thought maybe I needed a chang...
Tuesday, December 17, 2024

Distracted

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 I had a cry yesterday and I wasn't sure quite why, but it had something to do with the pain of missing Daren, my brother and my dad. I ...
Monday, November 25, 2024

bubbles of grief

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I feel like the grief over you had been like bubbles I'm trying to control, that are drifting around. Bursting quite randomly and of dif...
Wednesday, October 30, 2024

community

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My biggest challenge that isn't VHL. This one is hard. But as is my way, I'm going to find positives to hang on to.  As always my fa...