Changing Attitudes

13.06.16

I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants?

It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this is normal or if this is to be expected and will pass or if this is something on a slow simmer than I need to get checked out.

Since then I’ve numerous bouts of being able to eat well and wanting nothing but water. Both make me feel uncomfortable inside because they are creating so much pressure on my now-slightly-emptier abdomen. (They removed 30cm of Crohns ridden small bowel and a golf ball sized cyst on my left ovary; there is BOUND to be space) Some days – usually after a couple days of pain – I sit and wonder if this is worse than before the operation? Honestly? It is. I wish in these moments that I’d never had surgery. That I’d pushed them to pull the plug on the Vedolizumab and go for the clinical trial in Nottingham. I can’t do that now. I’ve had surgery.

 

I’VE HAD SURGERY.

 

I keep forgetting that, in its entirety. But I don’t ever forget about it. Because it hurts so much. My incisions itch and pull. My abdomen is still swollen. I feel sick every morning. Painkillers are useless. I’m frustrated that after over a month, nothing is better.

This is what I feel my family and partner feel too. That I should be better by now. I had surgery. Isn’t that a magical cure? It’s suppose to help not make things worse. Yeah, I thought that too. I hide how upset and angry I am about that. I suppose that’s why I broke down in front of the doctor, and she then asked about my emotional health. I tried to explained between big wet tears and all she could recommended was anti-depressants. For a month, then come back for a review okay? By then you’ll have seen your consultant, have some answers and your results. Maybe the hope is that by then I will have improved. Hope so.

 


03.02.17

I remember coming home that afternoon with the prescription in my hand. Anti-depressants. Was I depressed? Wasn’t I just frustrated and annoyed? Are those two things completely different or interchangeable? That appointment made me more confused and lost than before. I felt like no one was listening to me, and at this point, no one was. I had to be readmitted to the hospital three times before I would be taken seriously. I was depressed; I just wanted to be fixed, I didn’t need ‘those’ pills.

I was hopeful that my Right Hemicolectomy would help me. But all it did was cause more problems; problems that no one expected or believed were happening. They had to take my colon out to save me from more hell. It was that body part that was always holding me back.

 

Do I feel grateful for my ostomy, considering how I came to have one?

 

It wasn’t quite planned, or was it quite an emergency. I knew it was happening; I was very sick – the PICC line and NG tube were evidence of that – but who wants to be told you need an organ removing? Those ten days of waiting for surgery; being fed through a line going into my heart, dealing with the fact I would have an ostomy, let alone how I would cope with one… it was the longest ten days I’ve ever known. They now feel like a lifetime ago. I took photos of my time before surgery because I knew I wouldn’t believe it happened.

Those ten days – plus many more – made me into the patient I am today; the patient I always wanted to be, the one I knew I had to become. I didn’t fight my surgeon, nor my consultant or IBD nurses. I let them cut me open and give me Pricilla because I knew I needed it. I would suffer more if I didn’t choose it. Yes, choose it. It was still my choice, down the last minute before they anesthetised me. It was my choice. Which makes me so confused when I love and hate my ostomy.

I’m stuck in that middle ground of sort of having my ostomy planned, but still waking up with one was a shock. Add in to that, how well I have recovered and now how I’ve even gone into remission with it. It is just pure bonkers. When I think back to my abdomen without scars, without the bag, when it was flat and disease ridden… it feels like another person’s life. This life feels like someone else’s. And when I think about the fact that Pricilla is here for the rest of my life, also gives me the feeling that this life is someone else’s. I need to get to terms with that, make peace with it, realise the reality of that fact.

 


21.03.17

I see my consultant today, the first time since Christmas, just before I got the call to tell me I am in remission. I have a lot of hope for today’s appointment but I also have a lot of fear. Accepted fear, because I know I need to advocate for myself.

I never once doubted that advocating for myself and my care was needed. It always has been, my case has had its moments of being utterly confusing and downright depressing. But those times are way behind me, long gone when I consider how well I feel right now. How well I have been able to recover from surgery, how much more I am capable of in seven short months.

Those feelings of ‘this life isn’t mine’ have faded but not been erased. I don’t want to erase something that keeps me present. Feeling as if this is someone else’s life, that this – all of what I am doing – is someone else gives me purpose. This someone else is the new me.

Painkiller Addiction – My Other Recovery

Despite being chronically ill for the past four years, I’ve never thought of myself as needing painkillers to get through the bad days. Not that my bad days weren’t bad, I was just able to manage my pain. But surgery changed all that. I had planned IBD surgery on my bowel in May 2016 and  the one thing I was terrified was the pain I was going to go through. I knew they would keep me dosed up on morphine in hospital but I would not be allowed home with it. I had to get myself through recovery and out the other side. I […]

Continue Reading

Misery DOES NOT enjoy company

I am feeling utterly miserable today. I don’t know what has gotten into me, but I don’t feel happy at all. Maybe it’s the 4am wake up call my subconscious gave me this morning, the belly pain that started up soon after my eyes adjusted to the sun coming up, or even the denial of why I was awake at that time. It could be the lack of activities I have to do at work today. Or the feeling of this week dragging out and knowing the weekend will fly by, once again. But I just know I’m not a […]

Continue Reading

Unhappy and Empty.

I’ve been without my blog for two months. And those two months have been possibly my worse for a long time. I came back from holiday and returned to work. My support group has gone officially live. I’ve taken two new Crohn’s medications, four rounds of antibiotics, packets of painkillers, becoming slightly dependent on Tramadol and felt so utterly depressed, alone and isolated I don’t know what to do with myself. So I am turning to writing to help soothe the cracks in my mind and in my heart. On the most simple level of feeling, I am tired. I’m tired […]

Continue Reading

** I wrote this post almost two weeks ago, but was in a desperately dark place. Posting it didn’t, at that time, seem appropriate** I find my self being very angry tonight. Why? Because my boyfriend gave blood at a donation drive. I sat there and watch that guy sit through donation for a very selfless reason: Me. I can’t give blood ever again. Despite the Crohn’s, my anemia prevents me from helping someone in need. I find that very frustrating. That I’ve gone from one of the people who had nothing wrong to a person who could very well […]

Continue Reading

Caught in the middle

I sit here writing to you on this Sunday evening hoping to find some clarity in the days ahead. I’ve been pretty poor at writing my blog of late, it seems that things have been getting in the way – mostly boyfriend and work related ‘things’ – but I feel as if I don’t spent enough time getting through the real crux of my problems. The inevitable fall, or the path to my next admission. I am stuck these days waiting for something to happen. Most days, I feel none of the dread I once felt many months ago, when […]

Continue Reading

“Do you wish to continue with the rest of the sessions?” I considered – only for a moment – saying no, at first. But then I contemplated the help my counselling has given me thus far… how it is helping me come to terms with Crohn’s, to accept myself first and everyone else second, to try and communicate better with everyone around me, to becoming more honest about my emotions, to take down my walls and lower my defenses. Yesterdays session was a hard one. I’ve mulled everything over, and I come to the same conclusion; I can not see […]

Continue Reading

“Desensitation”

The wonderful Sara wrote this post on her depression and these paragraphs stood high above the rest: “I’ll admit that some of it has to do with desensitization. Back then it was my first experience with those things and therefore a lot scarier. Now having a PICC line inserted, having an NG tube, getting a blood transfusion, having surgery, etc. isn’t a big deal because I’ve been there, done that. It’s just something that is part of my life now but I don’t let it consume me.” “Because of all of my struggles I am thankful for my disease. As […]

Continue Reading

“I’m in repair.. I’m not together, but I’m getting there.” This is a post inspired by the loving words of support, the banter and the joy I get from my IBD Twitter family. They are awesome, every single one of them. Since having them all in my life for only the past 5 months, I wonder how I ever coped without them. It is safe to say, with some certainly, that I would be a messier mess if I hadn’t got them around me. And on Saturday I get to meet some more of them face to face. I am […]

Continue Reading

“I miss you”

Kat (hipsteralice) wrote a beautiful piece on WeGoHealth True Tuesday (May 8th) about missing herself. “Those 3 dreaded words: “I miss you.” They make me feel resentment and sadness. Because as much as you may miss me, I miss myself even more… But what happens when you suddenly become chronically ill, and who you are, becomes who you were?” You should feel good when someone says that they miss you. That there is something about you that someone missed and feels compelled to gravitate towards you once more. But like Kat said, when you become chronically ill, who you are, becomes […]

Continue Reading

You think you know, but you have no idea.

I am scared. Alot of the time. I was sat on my bed earlier on, lying next to my boyfriend, trying to find a moment to just relax and be in the moment. It is so hard to just be in the moment. And this isn’t to do him a disservice, but it is so terribly difficult of late to relax and just be happy. Sure, I smile, I laugh, I even giggle, but I worry. A tremendous amount. Here is a snippet from the monologue inside my head: “Right. Work. Work. What if I need the bathroom at work? […]

Continue Reading

My disease has become very invisible. I am the Queen of multi tasking at work these days. The depression is hidden too. Six people know about my fears. About my anger and my confusion. They know a limited amount of how hard I struggle every day, with one thing or another. I wish I wasn’t so full of feelings, of negitive thoughts.

Continue Reading

“Dearest blog..

.. I write today with a mind full of self-pity and frustration. My disease has hold on my life, every aspect of it. It is very solitary, dealing with and learning about it. I have to listen to my body more than I have ever done before, listen to it over my mind and over my heart. I’ve never done that before with anything. EVER. I was, and am, fine on my own. Albeit lonely, I relish the time to myself. Everything has been such a constant go for the past few months – full of worry and patience – […]

Continue Reading

Strength

My body never failed me until August. I wasn’t really ready for it. I guess you never really are until it happens. It forces you to focus. Makes you slightly more paranoid about how well you do things. I lost my ability to walk very far. To even do anything without becoming breathless. I wasn’t used to it. I still suffered with it when I was last discharged. In fact, my last spell at Good Hope rendered me physically drained. It was painful, everything was painful to do. But I had to do it, to work my muscles and get […]

Continue Reading