Jess🐾
@bladdercrap
A sufferer daily with fowlers syndrome and painful bladder syndrome! chronic pain! Mitrofanoff 18.11.19 UAT 🦋 & CFS PoTS
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Thanks stoma for the 5am wake up call to a super leaky bag and wet bedding 😩 Have to be up in an hour and half no point going back to sleep 😩😩
Nooo my stoma has shrunk in size and my current pre cut bags are not fitting properly damn it! I can’t get samples as I’m so new post op! But I have 30 bags pre cut to size 🙄any advice 🙈
Stents and stitches removed from my stoma! Was expecting it to be painful and it wasn’t!
In all my years of being in and out of hospital I have never known this ward to be so noisy!!! It’s like trying to rest but in a kids park!
Having my bladder removed tomorrow! Doesn’t feel real yet. Laying in hospital wondering if I should cancel the op 😂 1: lights on the ward don’t go out till 1am back on at 6am 2: it’s so stuffy in here my nose is blocked! 3: smokers coughing their guts up at all hours!
The NHS have seriously failed and let me down! Urgent surgery which should have been done many months ago won’t happen now till mid next year! That’s over a year of waiting now! If UCLH weren’t such idiots and let me choose the other hospital it would be done by now.
Let’s hope I have a better night and no sickness! There’s nothing left in me!
The past 24hr have been brutal! From camping in the bathroom to spending it in A&E.
I feel so unwell it’s awful! Awful tummy pains dehydrated for sure and I can’t stand up right! I know I need the hospital for fluids and pain meds but I can’t physically leave my bed right now! 😢my body hates being ill
Possibility I could be saying good bye to my bladder in December.. but I’m not hopeful till I get that phone call and letter saying it’s happening… 🙄
What is wrong with the NHS!! Get me in for a pre op! Which runs out in 7 weeks 🙄 Then told I will have to have it re done and the op won’t be this year at all and some time next year. Don’t waste my time and money coming up for appointments if you can’t get me in!
Waking up and not having my dog by my side is awful! I miss him so much! It’s killing me😭😭
😭my whole body hurts! Thanks PoTS. Had a fall earlier smashed my knees up again! Smacked my head! Hurt my shoulder and sliced my finger open 😭😭can a girl get a break from this!
Keep telling myself it will be ok and all will work out! Don’t stress over things you can’t control.. what am I doing.. Stressing over things I can’t control…
Come into work knowing that I won’t see my colleagues any more makes me feel sad. 😔
Pay £10 or so a month for @unisontheunion Get sent rubbish in the post and have a union rep who is non existent atm 🤷🏼♀️
PoTS is such an awful condition and people don’t understand it or the impact it has on the individual.
I hate pre work anxiety! And not sure why I’m anxious over it… Hardly slept due to this sodding anxiety!
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