It’s always darkest before the dawn

I am an emotional person and very empathetic. You will see me shed a tear or two at most things 😂 happy or sad or ‘Look how happy she is’ with tears streaming down my face, or if a loved one is hurting, I will be crying with them, it feels like I can feel it too. 💔

So in the earlier days of anxiety, tears were kind of my default position. Both the anxiety itself, then the anxiety about the anxiety. I just did not know what was going on and the panic caused and the thoughts caused by the anxiety …

But sometimes in life, a good cry is therapy in itself

I started writing this blog because of the darkness that I could feel closing in on me. Writing is a way to take back some control and find some meaning in the chaos.

Equally tears have their place too because this is not ok. Nothing that has happened to me so far is ok, I am angry, I am scared, I am in pain and I have a stomach that does not look like a stomach – it I scarred, there is a tube acting as a drain out of one side, there is a S shaped wound stapled together down the middle of the stomach, I do not have a belly button and I have a Stoma😶

*Full explanation of my condition and surgery in upcoming blog, most of the information is unknown to me as I was either on a lot of pain killers, in surgery or in Intensive Care. I have tasked Mum and Dad with the hardest job of putting pen to paper and telling me about that day in their own words. This is a big ask for me of them as Dad’s natural first instinct was ‘I have been trying to forget about it’ and quite rightly too! I will give them a few more days to decide if they want to tell their story otherwise I will do a little interview with my sisters based on what they were told.*

I will cry if I want to!

So yesterday, in a great deal of pain, the stoma club in the bay, we all had, one by one, the occupational therapists round to get us up and out of the bed. Everyone of us struggled and fought the pain to eventually make it into our chairs, have beds changed and then congratulate ourselves with an afternoon nap for a job well done.

Today, I watched how everyone was up a lot faster than yesterday and into those chairs. They all looked to me as if they had run at them like gazelles.

And then it was my turn with the HCA not the OT but same process, I know the drill …but WTF! My legs felt like led, heavier.than before, I still could not sit myself up in the bed or shimmy to the edge and when I got there I was howling in pain (bloody staples in my stomach!) it was worse than the two days previous!

That is enough for me, I am done, leave me here. I look at the amount of progress that 30 mins of pain and effort had given me … I had shimmied up the bed slightly and was now laying Centre slightly left rather than complete centre. And I hurt like hell!

I told the HCA that this is me, I will try again later but right now, that is it 🤷‍♀️ Tears are starting to fall. No I don’t want to talk, Yes I just want to be left alone, Please close the curtains.

So I lay there and cry. Cry because it’s not fair, cry because yesterday I didn’t feel alone and today I do, cry because I am in pain, I just lay there and cry … but I needed it too my mind and body needed the release of a bloody good cry, so cry I did.

I can hear the other ladies, who are now in their chairs but in no way mobile, whispering, trying to agree whether to leave me alone or call out, so I make it easy and call out to them. ‘Sorry I am just having a minute, I am ok.’ ‘You did such a great job … Stop putting so much pressure on yourself’ etc I thank them but tell them I do just need to be crybaby for a minute but will be fine,

With that I cry myself to sleep as a total failure at life.

I wake feeling no better but can hear Caroline the OT coming for our planned date which was to walk over to another bed in the ward and show her a photo from my instagram (it was a joke with one of the other ladies that I don’t look like this and we wanted to show each other real life photos!)

Caroline walks in, says nothing, pulls up a chair, takes my hand to her face and just rocks and hums. I explain the morning and the two supercharged patients putting me to shame. As always she listens and laughs along with me.

She then says, Yes there are similarities, you have a stoma and have had a surgeries in similar areas. But they had planning, discussions and acceptance time.

But you have now had 3 large surgeries sprung on you. You nearly died multiple times when you came in, you were broken and empty when you got here, you had severe infections, you had toxins poisoning your broken body, you had lost a lot of weight, we are still working on getting your nutrients up. You have surprised the hell out of everyone with just how quickly you have come along and how well you are doing and now we are working to get you home? That is incredible!

You are too hard on yourself.

Caroline had to scoot but promised to be back later for the date we had planned.

It is around 13:00, I am eating lunch and getting psyched. This is going to hurt but I am ready for it because I want to go home. At 13:30 I request my top up liquid Maurice 🤩.

13:50 and I hear her, she asks if I mind waiting just a few more minutes … Super charged patients including E are now going home today so she needs to confirm they are both ready and ok on the stairs.

Traitorous bitches 😂 of course I am delighted for them both but jeeeeeeeeeeeeeez!

Caroline comes back and is ready for me. I manoeuvre myself to the edge of the bed quickly and with no fuss. I take a moment, a quick breath and a sip of water. ‘Let’s go.’

Up I get, I don’t need Caroline to physically support my weight from the bed, I do that my self 🫠 I am standing strong, my legs are jelly but my brain is not going to let those skinny little cocktail sausages back out of their duty!

I give Caroline my phone, she picks up all the remaining wires and gadgets attached to me and off we go, on the adventure of a really shitty life time to the bed opposite mine to show E what I really look like minus the illness and bad hair.

The journey is from my bed where I am laying with the red pillow it the walking frame opposite. This is also my view this morning now that the stoma crew has been disbanded for Solo work post discharge.

My legs don’t quite spring into action and I feel everyone of those little shuffled steps on my journey but I feel them in my heart, I am basically flying at the moment.

I can do anything 🥰

Here are the photo’s I chose to show who I am but in the excitement I think I just showed her one of them and I can’t even remember which –

Showing Caroline and the ladies also meant showing myself, reminding myself who I am and what I was busy doing before Crohn’s disrupted my life. That was the most helpful exercise of the day … a real ‘Remember who you are Simba’ moment … without Rafiki hitting me over the head with a stick 😂

Caroline asks, shall we go a bit further?

Why not?!

We walk past the final bed in the ward to reach the door. She points to a set of double doors a little further down the hallway. ‘That is tomorrow’s goal … unless … ‘ 🙂 So we walk there too and then turn around and head back, the other beds are whispering well done, it is visitor time as well so a real moment to make a plonker of myself if that’s what we were aiming for.

We return to the chair and Caroline expects me to sit down and instead I do a couple of March’s on the spot and ask Caroline to tell Jenny to F*** off! 😆 Jenny has done some of the really hard sessions with myself and Caroline, the very early and most painful … no matter what state you are in when you reach your goal Jenny asks you to do a little march on the spot and my answer after the first time she asked for it was a look of disbelief and F*** Off to Jenny. We all laughed and now it is habit if Jenny is not there, I will do it and Caroline will pass on my best wishes 😆

One fan, bed one of the bay even offered me a strawberry which Caroline kindly collected for me once I was safely in and happily and bloody tiredly back in my chair with all my wires and contraptions suitably affixed.

Caroline completes the final part of her daily agenda by offering me a cup of tea 😃. So our lovely lady makes me tea, gives me my well done and tells me to stop overthinking and go with it a bit more and then off she goes to the next poor/lucky person who get to spend time in the company of Ms Caroline.

Maybe an hour passes and I am comfortable enough in the chair, just writing and then Mum and Dad come around the corner with big smiles on their faces and then Caroline retells the tale to them too and the ladies in the bay say how proud they are and how strong I am … it is mostly blowing smoke up my arse but it was needed and appreciated and I wish I could have bottled it and used it as perfume for the year.

Lucky I have drawn such a crowd because as much as by this telling of the story myself and Caroline were racing down the corridor – one of them will need to help me get back from the chair and back to bed. 😂

Back into bed, visits with Ma and Pa and then a visit from Auntie Jackie and big sister Lisa.

I feel sad for Lisa, she feels out of the circle of what has been going on as she has been on holiday but she really has been included and kept in the loop all the way through. But in her position, I would feel exactly the same way, knowing that people would try to protect you from some information as there is nothing you can do, you’re not here … but the same logic, those who were here have been no less helpless just without a beach. Even more so, I have always been super close with Lisa and if it was the other way around I would have struggled just as much too. But it is all good Leisy, Love ooooo.

Lisa brought me a night time snackage of hummus, cheese cubes and pitta breads 🥰 I am being told to get my protein up and I am working hard to do so but it does help when it is yummy to do so.

Lots of goodbyes and exchanging of numbers as the ladies leave to recover at home. Every single person I meet like them is an absolute Godsend to me, I am not alone, other people make it work and this is temporary, I have this. But each one that leaves stings. Selfish as hell but I would like one of these older wiser ladies, especially the radiographer from last night who was just fascinating to speak to and who spent her time talking to silly old me, to just wait with me and we can be discharged together 🥰 No such luck but I wish her a speedy recovery.

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