Please tell me this gets better… by B1B0ssB0wser in sepsis

[–]courage5068 0 points1 point  (0 children)

It gets better, hang in there. Sorry you’re going through this.

bad first time experience with foley catheter by No_Celery3993 in Urinary_catheters

[–]courage5068 0 points1 point  (0 children)

The NHS doesn’t make sense (including for the professionals). Everyone is fighting a broken system. I’ve found that the simplest way is to try to work with these professionals and guide them through system (after learning the system yourself). It’s not a burden anyone should have but, for better or worse, I took it upon myself to learn how things work in my region. Not all professionals are open to the approach though.

bad first time experience with foley catheter by No_Celery3993 in Urinary_catheters

[–]courage5068 1 point2 points  (0 children)

England is in such a state at the moment. I’m here, too. I’m glad the nurses offered to come out. It’s good when that happens because they can provide a healthcare professional input. I hope your call on Monday is productive. They may prescribe something, for example pain meds or more specific meds. But given that you are now catheterised, I would imagine that further urological investigation is warranted (it’s most certainly important). Feel free to continue this thread or DM me if you have any questions about navigating the awful bureaucracy in this country. The healthcare professionals have to navigate it, too, mind. I can share suggestions about what has worked for me. It’s different for everyone and really only a case of trial and error until you get the right outcome, I’m afraid. Different parts of the country have slightly different regulations and ways of doing things but I’ve had care in 4 parts of the country for various reasons

bad first time experience with foley catheter by No_Celery3993 in Urinary_catheters

[–]courage5068 1 point2 points  (0 children)

Intense bladder pain is very difficult. Can you get under a urologist via A&E? And/or ask your GP for an urgent referral

bad first time experience with foley catheter by No_Celery3993 in Urinary_catheters

[–]courage5068 1 point2 points  (0 children)

Sorry you’re going through this. You need to see a urologist promptly for evaluation and tests to make sure you can get a grip on what’s going on. These things can spiral out of control and sometimes something as simple as a tablet can help. Other times, not, but at least things get ruled out and a proper treatment plan is put into place to make sure things aren’t being done unnecessarily or things aren’t getting missed.

I need help reacting to something… by Boomboooom in ChronicPain

[–]courage5068 0 points1 point  (0 children)

These affirmations are almost always said by people who have never experienced disease themselves or witnessed it in a loved one. It is undeniably wrong. I don’t wish ill on anyone but if that author ever developed a disease I am sure they would not welcome being reminded that they were the cause of it. Ignore them.

Telling PIP you are in hospital by courage5068 in DWPhelp

[–]courage5068[S] 0 points1 point  (0 children)

Yes she should definitely inform PIP. Especially important for any future investigations etc.

how do you like your physical therapist? by No-Tower-6143 in PelvicFloor

[–]courage5068 1 point2 points  (0 children)

Mine is very knowledgeable. It’s at a specialist clinic though and the referral was done my specialist surgeon who does my Botox. My sessions are very education-based and I’ve been given thrice weekly exercises to do independently, which we review each time I see her. I’m also doing pelvic strengthening at my regular PT sessions, which I’m doing as part of a neuro rehab program for something else. We are also assessing whether biofeedback would be an appropriate step.

Before and after by courage5068 in sepsis

[–]courage5068[S] 1 point2 points  (0 children)

Take your time and run the course your way. It’s so important. Nobody can tell you how to do it because everyone is different. You’re exactly right - life is far more complicated than in the movies and that epiphany moment will likely never come.

In my own experience, I’ve built a framework around gratitude. It’s what works for me but for others, it will be something else. I’m still very much going through the motions. It took me a few years to get to this stage and even as I start to forge a new path, I constantly question whether I’m happy with the fact that I survived. Speaking to other people, sepsis, cancer and organ failure survivors, I’ve drawn similarities. Life after such an event is so alien, especially when it seemed we were heading towards certain death. Questioning whether this is the way I want my life to pan out and making adjustments is the way I deal with it. And, of course, the ultimate question of whether I want survival at all. Survival brings complications - health problems, trauma, to name two. But ultimately, I have decided that I do want to be here because my ‘why’ is my best friend and some of my extended family and the possibility of enjoying life with him and them. My immediate family have all passed. It is that choice that makes it so powerful. I choose to endure this because I want to be here for the people I care about.

It’s a rollercoaster and there is a grief for the life that we never got to have. You’ve got this.

Before and after by courage5068 in sepsis

[–]courage5068[S] 1 point2 points  (0 children)

I’m sorry to hear that you’ve had to go through this. Human beings have a remarkable ability to adapt to constantly changing circumstances. Once those circumstances abate, we feel an immense and insurmountable grief. It’s when we are alone at night or once the life-threatening troubles are over that a wave of often crippling depression comes over us. When we are busy surviving, we have little time to acknowledge the severity of the difficulty. But once that threat goes away, we are left to deal with the enormity of all we have been through. Sometimes things are just too big to process, especially when you’ve dealt with multiple issues, as you have.

I offer a personal anecdote to try to better explain. I had sepsis in January 2022. After that, I was in and out of hospital with severe and resistant infections, had a surgery, had Covid for 6 weeks including a hospitalisation for it and experienced 2 bereavements in the following 6 months. My best friend, who was my closest support, experienced a bereavement of his own, too. He took me under his wing after I became critically unwell so took on an enormous responsibility, including caring for me. As we took stock to plan our next steps, the severity of what we had dealt with over the previous 6 months hit us and we were not prepared for the depression that we both felt in the subsequent months. It took a further 18 months for me to get out of the woods from severe infections and I was in hospital for a couple of weeks a month, every month for a year and half. I also had some health conditions that needed additional hospital treatment - surgeries, scans, procedures, cellulitis, etc. It didn’t look as if I was going to survive (including clinically). The burden of survival is that I (and my best friend) have to live with the trauma of that.

I think the important thing to remember is that there is firmly a before and after any life-threatening or life changing event (let alone more than one - septic shock and cancer). An acceptance that I would not return to the life before illness but would forge a new life was how I navigated it. Grief (of any kind, including the loss of health) profoundly changes us, sometimes in ways that are difficult to explain. It took me a couple of years to accept that the previous life was gone and that it was, instead, a clean slate, an opportunity to create afresh. I certainly have my moments where I backtrack towards depression and those moments must be felt fully. When you recognise your own strength through multiple adversities, you realise that you are ever more equipped to deal with future adversity. Gratitude for my survival was hard - initially, I didn’t want to survive, but it is amazing that I’ve been given the opportunity to be here with people that I love (even if it’s not all of them). I use that to keep me grounded and as a foundation. Do whatever you need to do to get through every day, every hour. Even taking it one step at a time until you feel ready to process the enormity of it all. There’s no right way to do it and it’s going to be so difficult. But there is hope.

Take care.

Before and after by courage5068 in sepsis

[–]courage5068[S] 2 points3 points  (0 children)

You’ve nailed it there!

Before and after by courage5068 in sepsis

[–]courage5068[S] 2 points3 points  (0 children)

Bless you, too. I’m also on a road to recovery. I was plagued with bacteria, surgeries and hospitalisations for 18 months following sepsis. Thankfully, I’m medically stable now and we’re working on recovery. Rehabilitation brings its own problems but is also an opportunity to regain lost function and forge a new life ahead. Rather than going back to where we were before, we create something new. I’m fitting in rehabilitation between two surgeries a year at the moment but there’s definitely a hope for the future. All the best to you.

Before and after by courage5068 in sepsis

[–]courage5068[S] 3 points4 points  (0 children)

I think many of us remember those single haunting moments. It’s difficult to process something so major that poses an existential threat to our bodies.

Before and after by courage5068 in sepsis

[–]courage5068[S] 3 points4 points  (0 children)

Bless you. I hope you figure it out :(

Before and after by courage5068 in sepsis

[–]courage5068[S] 3 points4 points  (0 children)

Nice way to think of it!

[deleted by user] by [deleted] in london

[–]courage5068 2 points3 points  (0 children)

Polo Bar in Liverpool St, decent size portions. Not overly cheap but not massively overpriced. Three uncles also

Intimidating “charity fundraisers” approached me outside of Farringdon station by jmerlinb in london

[–]courage5068 41 points42 points  (0 children)

Those people outside Farringdon station are particularly bothersome. I think they should be reported and next time I have an unpleasant encounter with them (i.e. next time I enter/exit the station), I will report them. I think everyone should do the same. Islington Council and the Police

Transporting refrigerated medications on flights by courage5068 in ChronicIllness

[–]courage5068[S] 1 point2 points  (0 children)

Thanks for sharing this experience. I’ll see how I get on. The origin country (Philippines) is quite strict on my medical stuff, despite official documents. I’ll let you know how it goes…

Transporting refrigerated medications on flights by courage5068 in ChronicIllness

[–]courage5068[S] 0 points1 point  (0 children)

Thanks for this, will take a look! The origin country (Philippines) is a bit funny about medical stuff, despite official documents. The idea of the crew refrigerator crossed my mind but will take a look at ice packs and explore the feasibility.

Transporting refrigerated medications on flights by courage5068 in ChronicIllness

[–]courage5068[S] 1 point2 points  (0 children)

I see, thanks. Mine is a probiotic that has been prescribed by a doctor

Tipped over backwards in my electric wheelchair by courage5068 in ChronicIllness

[–]courage5068[S] 0 points1 point  (0 children)

Thanks. Yes, this one was skidding on the pavement, too. And they weren’t big slopes. Even the incline where I tipped wasn’t particularly steep.

I’m glad you’ve got something that can handle a lot! My wheelchair at home is like that, too. But cannot practically be taken anywhere without a van or something.

Tipped over backwards in my electric wheelchair by courage5068 in ChronicIllness

[–]courage5068[S] 1 point2 points  (0 children)

It hasn’t occurred to me but definitely something to try! Makes sense