The run up to the 19th of January is never easy for me. My body goes into a weird funk, my headspace changes and this year? I was too caught up with being busy and feeling crap to really listen to my body and acknowledge why she was doing what she was doing.
For the last 7 years, in the run up to the 19th of January, my body remembers. She remembers that the 19th of January 2012 was my last day of radiotherapy. It was the last day in hospital-based cancer treatment.
8 years, year 7 has been the most turbulent health wise. With my chronic health issues all playing up. It was hard, I feel like a stone that has been ground so much that I’m turning into a fine powder.
And yet, I’m still here. I’m taking that powder and sculpting it into something new. Into me, the me I choose to be despite and enriched by all these circumstances.
8 years done. It’s never a celebration. There’s a very small yay in recognition that I’m still going and a relief that I remain in “no evidence of disease” but there’s also grief, grief because I wish I had never had a cancerversary. Grief at knowing I will never really get that anxiety and trauma fully out of my system.
I wish for a day where cancer was something I didn’t have to think about.
My life is changing so much right now and yet, so many of my future decisions will be necessarily impacted by having had cancer.
It’s the loss of carefree and spontaneous choice that I grieve the most. Be it cancer, EDS or my gut issues, this is the hardest part of living with the consequences of having been acutely or chronically ill.
@shinecancersupport @ehlersdanlosuk
Thanks @lisabennettinsta @sunnylux 📸
#cancersucks #cancersurvivor #chronicillness #chronicpain #chronicfatigue #paraclimber #grief #newnormal #newyearnewme #cancerversary #silverlining #mentalhealthmatters #mentalhealth #headspace #trauma #leanintoit #acceptance #noevidenceofdisease #luckyfin #limbdifference #ehlersdanlossyndrome #inflammatoryboweldisease #ibd #pcos #adversity #youareenough #youarewhoyouchoosetobe #believeinyourself #makeyourimpossiblepossible
There’s something profoundly grounding about having a steady routine. For me, it’s knowing when I’m in the office, what days I’m training. With last week being what it was, I didn’t realise how ungrounded I felt. I hadn’t sat at my desk in the office (although I was working) for 3.5 weeks. Sure I was on holiday for part of that but I find holidays ungrounding because they take me out of my routine. Today as I went to hospital for a routine appt and then the walk to work. As I approached Whitehall, my breath released and I suddenly felt quite euphoric. Seeing St James Park was just what I needed. I am back in the office and while it’s draining my spoons, it’s grounding, it’s where I’m meant to be.
How do you stay grounded when you’re ungrounded? What do you do when you’re routine can’t be a routine anymore?
Thank you for the kind messages all 🤗
Thanks @sunnylux 📸
#routine #backtoit #portrait #portraitphotography #fitmuslimah #hijabspiration #turbanhijab #paraclimber #howdoyoucope #mentalhealthmatters #mentalhealthawareness #feelinggrounded #feelingmyself #breathe #breatheinbreatheout #soakinthemoment #invisibleillness #disabilityawareness #spoonielife #spoonieliving #feelinghappy #keepongoing #feelingpositive #mondaymotivation #blackandwhitephotography #nature #natureinthecity
I’ve been back to London life for 5 days. The adjustment has been brutal as my gut hasn’t really been right for a while but has gotten worse now. This has made it harder to eat and drink so I’m drained and struggling. Thankfully this week I could work flexibly and stay home because it’s draining not to be able to eat and drink right. I also got out for a couple of light climbs but mainly I’ve been focusing on trying to feel a bit better.
There’s a lot of anxiety, shame and fear that can be felt when dealing with a gut that won’t behave.
Anxiety from worrying about where the toilet might be at any location, how to go from place to place when you might have urgency issues, what and when to eat to try not trigger symptoms, the worries around eating enough (nutritiously and calorifically) to not only survive but heal and eventually thrive.
Shame, we as a society aren’t great about talking about gut issues so if you have them, it can be isolating and even hard to explain why you might be late somewhere or you might not be eating or have as much energy.
Inevitably, worse symptoms always have me questioning whether my condition has gotten worse or is this just another bad phase.
Add to this, there might be fatigue, pain or other symptoms, my favourite is the random fevers and reflux as my hiatus hernia seems to also be incredibly unhappy right now.
So how am I coping? Well, this is upsetting but this is where I’m at for the moment and that’s ok.
My calendar next week returns to normal, I’m nervous about how I’ll manage but life wouldn’t be interesting without a bit of excitement right?
For those of you with gut issues or anything chronic going on, I hope you get some respite soon.
@ehlersdanlosuk @crohnsandcolitisuk
#inflammatoryboweldisease #ibdawareness #ibd #ibs #ibsawareness #irritablebowelsyndrome #chronicillness #chronicfatigue #exhausted #drained #itiswhatitis #acceptance #feelingpoorly #flareup #spoonielife #spoonieliving #ehlersdanlossyndrome #guthealthmatters #staypositive #silverlining #invisibleillness #disabilityawareness #mentalhealth #stayhopeful #keeptrying #letstalk #breakingataboo #notalldisabilitiesarevisible
