Usual spiel, NO PITY PARTY please, and forgive me as i’m still not proof-reading. I’m still telling myself, “no-one reads this. it’s just your own private venting space no-one gives a shit.”

Back in town. The #dylogen wedding was very beautiful, so full of love and happiness, the new Mr & Mrs Tomlin were absolutely breathtaking. I tear up all over again looking back at their photos. My overall NZ stairs report? i think i managed about 30 stairs over the entire trip, i only properly fell twice UP the concrete stairs 🤷🏽‍♀️ I was so lucky to have two wheelchairs, and many pairs of strong shoulders for assistance. So thankful for my family for their patience with me, and my bestie Thom for literally always being within arms reach, moving me around town.

Many thanks to Lorazepam and endone/targin for seeing me through the trip well, i made it to last day and then excessive fatigue and grogginess started to swing through. Back in AU have had a few consecutive, abysmal days seeing me just lay still in bed, breathing and existing. the ol’ gravitron lava legs burn is waking me again through the night.  A couple delicious voms paired with jerks and shakes. Totally worth it, i’m so grateful to have seen through the main days and sit with my loved ones in relatively good form.

Fridays haematology PMCC appt had another medication jig, and she’s written me off another two months. My life is frustratingly mediocre and I’m literally watching time pass by. I’m not intended for mediocracy. *Queue in anti-depressant medication*  Uni starts on Monday. :/

Not really getting super upset with the inconsistency of my bodies responses this week. (except for when i got stuck in the bath, and had to scream for help to get out) Every day i push my limits and then crash. I have to remind myself to stop being so hard on myself, i’m just tired of being tired. I’ve openly admitted i read too hard on others with FND but i have to be realistic and learn from others.  I’m not expecting, or waiting for things to happen/not happen i’m just chugging as best as i can. I’m proud of my efforts, trying to walk about when i’m having a good spell. I’m trying to not rely on my crutches or mobility walker. The flip side is where I am unable to walk far because of the pain, weakness and paralysis in the legs which limits my independence. Sometimes being OK is all I can hope or strive to be.

This does build up and as mentioned previously, I am prone to episodes of social anxiety and depression. I’m just mulling about, making a prison at home. Oh yeah, and i’m really embarrassed of physical myself. My moon face, my triplets are ripping out and i’m still waddling. Compliments from my friends and family, remarks about what I look like tend to be hard for me to take as well. Thats something that i know i need to work on, myself.

I’m still thankful for the excursions, messages, people checking in on me. I must apologise for my social anxiety. I think thats everything

*Breathe and publish* 

Spoonie life, i’m roaming with a friend tomorrow so its in my best interest to shower and get ready tonight in attempt to savour some of tomorrows energy for the days little excursion. 

I’ve taken some pics, added my scales and measurements. 

  • Apple watch back on, queue me to move more.
  • Getting outside
  • Keep at rehab/strengthening regimen  
  • bringing in my nutritional habits. Tracking my intake, which in turns less cafe brunching/dinner dates.

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