Health and Control

It's been a tough week. If I was real with myself, I'd admit it's been a rough few months. But lets stick to this week and really, this post is an excuse to get all my negative feelings out, and just maybe, see some perspective and feel happy again.

I'll admit something to you, that I haven't said to anyone. Here goes …

I feel like my body is breaking down. I'll explain; I bruise easily, I've had two blood noses in the last few months (I've never had them before), my teeth feel like they're gonna fall out – they won't, but I feel like they will. I've had stomach pains so bad, I thought I'd have to go to hospital. I've been eating as healthy as I can, and still feel bloated, almost on the daily. I'm tired even with adequate sleep, and I'm so stressed and anxious, I can't deal with it anymore.

I know half of this stuff is not a big deal, or just stupid, I get that. But to pinpoint what is going on here, comes down to two things. Control and health.

I'm not in control. You can manage your illness, and dare I say it, have it under control. Sometimes you lose that control, but if it's not for long, and regained, things get back on track. I feel like things have not been under my control for a long time, and its starting to take real affect.

Health; this has only just occurred to me, but I can see why it upsets me so. When life is getting you down, the one thing that gets people happy again is 'well, at least you've got your health'. I feel like this is worth its own post, but briefly, it's hard to see positives, when the thing that gets others back on track doesn't apply to you.

Honestly, I've been finding Crohn's and my heart problems difficult to manage. Mostly, mentally. Daily, you think about what to eat, how your heart is beating, and worried constantly about being sick, or worse.

It has an effect on you.

The other day I saw my GI for a catch-up, and the intentions were clear.

Tests.

Lots and lots of tests. Not related to how I've been feeling, no. These are to make sure things are still going well, or nothings developed etc. So, even if I haven't been feeling the way I have, these things would be happening anyway.

And I broke down. I hate to say it, but my chronic illnesses play a big part in my everyday. So, when I was told more of those days would be spent at drs and doing things to check them; bringing them even more to the forefront then what they already are. I hated it. I didn't tell my GI, of course. You take it on the chin, walk out of there, and immediately hate your life as soon as you're back in the car.

It's been a tough week cough couple of months because I can't escape the chronic illness mentality. It's more than that, I feel. It's like a prison – mentally, emotionally, physically, I am trapped into feeling, thinking, acting for my disease. And it's tearing me apart.

I should be happy for what I do have. I've been able to get out of bed, I go to work. I've been making appointments and going out with friends. Yes, I've been anxious, sometimes hating on where I am or what I'm doing because all I can think about is Crohn's or my heartbeat. But I'm still there. And I survived.

One day (hopefully soon) things will change. I'll still think about what I'll have for meals, wondering where the nearest bathroom is (just in case) etc. but I won't feel like it's controlling me. I'll be happy. And for the most part – and what I really want – I'll be healthy.

Putting Your Health First. And How it Can Suck.

It's been a long time between posts. And for anyone who might stumble on this little blog from time to time, and was waiting on a new post, I'm sorry. 

In good news though, I haven't been writing because A: haven't been sick! Or at least not long enough for me to write about it. And B: I've been busy. Aren't we all? Which means I'm up and about doing normal human being things. 

Or at least I have been. Not today. 

Which brings me to this post: Putting your health first. 

It's been a while since I've had to say no to something because of Crohn's. Unfortunately, it's the holidays here, blockbuster movies are all out, and there's so much to see and do because 'hey, it's the new year!' so it's the worst time for me to withdraw into myself. 

So, why am I going all recluse? 

I've been exercising! Yay (extra stress on the body!) - but let's save that for another post. It's also been Christmas - so overeating is mandatory. I'm also dehydrated; big time. 
Whatever the reason - be it one thing or all of the above, when I eat, my stomach kills. I have severe pain and have to lie down. Oh, another theory was gas build-up (either from food, or running) Crohn's is fun! 

And while it's only been happening for a couple of days now, and I'm not too worried, my anxiety is hitting high levels, freaking out that I might be sick. 

I'm also tired! And after how I've been feeling, could not be bothered to go out. 

So, in true Crohnserella style, I'm saying no. And for things I really want to do but can't, I'm ignoring messages because I'm that person who's being bitter and hating on why I have to stay at home, looking after myself, while people can go have fun. 

See, that's the 'And How it Can Suck' part. 

My reality is that I won't be able to do everything, all of the time. And while this is true for most people, for me it's a little more often. 

Hopefully, after my water-day (drink a load of water and that solves everything) I'll be okay, and ready to live life again tomorrow. Because as Crohnies, sometimes that's all we can do.

A Slice of Achievement

I debated whether to write about this or not, because while it’s for the achievement of a milestone…I haven’t actually gotten there.

Yet.

When I had my first flare up, back to yesteryear (2014) I lost a lot of weight – almost 10 kilos. The loss pushed me into the ‘underweight’ category.

I intended to put the weight back on after I got healthy again. Months later, it was time. I could eat and keep it down, I wasn’t running to the bathroom every ten seconds, and I could go out and live my life.

But the weight didn’t go back on – not for lack of trying.

I thought because I wasn’t being ill, that the food I ate would pile on the kilos. Things weren’t that simple. I even remember thinking the prednisone would make me puffy (water retention) and I would gain weight (water) that way. But that didn’t happen either. So dangerously underweight I stayed.

Fast forward a few years, and while I did gain a couple of kilos, it wasn’t enough to push me out of the underweight category. I was also nowhere near how much I weighed before I became ill.

It got to the stage where my GI referred me to a Dietician, who suggested I upped the amount of meals and bulked up my supply of fruit smoothies. It was an excellent suggested, but I wasn’t committed and only added a couple more kilos to the total.

By this stage though I only had around 4 kilos to go. But after months of sitting on the 45-46 kilo range, I was worried that I would never achieve the ultimate; 50 kilos.

Eventually, I lost focus on my weight. I figured (and was told by my GI) as long as I wasn’t losing any weight, then it was ok. Not ideal, but what can you do?

I was eating. I was also feeling pretty well, so I assumed everything was being digested ok. It was also a matter of putting on the right weight. It would do me no good to eat foods that (while would help me gain weight quicker) would cause me to go into another flare up due to its high salt, or sugar etc., and resultantly be worse off than before.

Eating high-fibre (chia seeds) and healthy fruits and vegetables would gain the correct weight. And hopefully I’d stay healthy!

But it was tough, and eventually I thought I’d never reach my goal, so I stopped weighing myself.

Today, I had a GI appointment in which they weigh you. It’s been over 3 months since I last weighed in at 46 kilos.

Today’s scales showed a weight of 49.9 kilos! I’ve basically made it! I know I haven’t fully reached my goal, but I wanted to share it with people anyway. I’m very happy that I’m almost there! It’s taken literal years to put that weight the flare-up took, but step by step, it’s been put back on.

And more importantly – I’m in a healthy weight range. Which is really all I can ask for :) 

The 'Foreverness' of Crohn's

It’s hot here. Like, really hot. It’s 10pm and 27 degrees. With the forecast to be 39 degrees over the next two days, the important thing is to stay hydrated; if not, Crohn’s symptoms could have a field day.

With my mind on Crohn’s, I headed onto the Crohn’s forum I get support from. There I found a thread titled, ‘The Worst Part about Crohn’s’.

I read through most of the answers, and while the majority were about anxiety, uncertainty and that jazz, which I totally agree sucks, I don’t think it’s the worst.

For me, the worst part about Crohn’s is the foreverness.

For as long as I live, Crohn’s will be there with me.

Crohn’s will accompany me on this year’s trip to New Zealand,

It job hunts with me,

It’ll be in the car on the way home from work tomorrow,

It will be a contributing factor about if and when I get pregnant,

It will walk down the aisle with me.

Crohn’s has been all my hospital visits after the age of three. It is also easily the thing I think about the most in my everyday life, and effects the decisions I make (what to eat, for example).

This is not to say that Crohn’s dominates my life. Or that my illness controls me.

But, as the foreseeable future is concerned, it will be with me forever.

It shouldn’t come as a shock – chronic by definition is an illness or disease lasting over 3 months, and in most cases incurable. While it may not show obvious symptoms, or even go into remission (allowing the person to be healthy over a period of time), but by definition, Crohn’s will eventually reoccur.

It’s always bubbling behind the surface.

It may not show any signs while I’m in New Zealand (it didn’t for my last overseas trip),

It stays calm during job interviews,

Can be the perfectly quiet backseat driver.

Mostly I don’t even notice it. However, Crohn’s is still there.

And that’s what scares me the most.

It's the Little Things

So a crazy thing happened to me just now.

I pooped.

Like a normal one.

I was happy and relieved, quickly realising how sad it was that I was reacting this way. Having a normal BM is not something someone gets excited about – it’s just (or should be) a normal part of life. But for me and other people living with Crohn’s or other IBS symptoms, a normal BM can make our day when our digestive systems are down.

So why get excited about a poo?

It’s probably because I haven’t passed something that normal since last Wednesday. I’m hoping this is a sign that I’m going to get better and whatever it was that was causing my digestive issues all these problems this past week has gone.

I’m cautiously optimistic about my body at the moment. I’m still terrified I’m going to have stomach pains tonight and end up spewing my guts up when I awake.

But I’m just going to take everything day by day and see how it goes.

***

Just got a call from my GI. After having a blood test yesterday, my results are in.

*drumroll please*

Unusual liver reading.

*round of applause*

This could be the cause of my digestive issues – maybe, maybe not. But it means more blood tests...great.

Welcome to Crohnie living.

Things can Change so Quickly

In the simplest term I can put it; I’m scared.

Since Wednesday (5 days now) I’ve had the worst experiences known to me in Crohn’s kind.

**TMI SERVICE ANNOUNCEMENT** do not read ahead if squirmish

On Tuesday night I had the worst stomach ache. Then Wednesday morning, I woke to the sudden need to go to the bathroom. I had some of the worst diarrhoea I have ever experienced. It was endoscopy prep medication bad.

That day I ate very little and wasn’t hungry. Diarrhoea stopped around lunch time. Then around dinner time, my stomach began to hurt again and continued till I fell asleep. In the morning I woke with the sudden bathroom realisation again, and the cycle continued.

It’s been that way ever since.

Unfortunately, I thought it was just a stomach bug and didn’t ring my GI sooner. Then it was the weekend, so I can’t ring them till tomorrow.

In five days my weight has gone from 45.5 kilos, to 41.3. HELP!

I just have to sit tight till I can ring someone soon.

I’m scared, exhausted – like, even writing this is tiring me out – I’ve been moody and anti-social.

In this case, things turned on a dime. I was going really well, no problems, then in days my health just deteriorated. I don’t know the cause. The only different thing I have done lately is add 25mg to one of my tablets (on drs orders, of course) but I feel like something so small couldn’t cause this huge change. Besides, the tablets are supposed to make me better, not worse. Adding should improve my situation.

It’s not yet been a week, but I feel like this change has already affected my life greatly. I have been missing out on work – it’s already been 4 shifts I’ve had to call in sick. I’ve stopped talking to friends and replying to things about going out – I don’t want to burden them with what’s been happening and bring them down. And I’ve been lying to my family about how much I weigh. They were upset when they thought I weighed 43 kilos – I can’t tell them it’s actually 41 now.

My worst case scenario is someone is going to tell me to go to hospital; I see that happening tomorrow when I ring the GI. But I don’t want to think about that, and hope they can offer me something (advice, help) that will hopefully get me back on track as quickly as this all started.

Things have just changed so quickly. It reminds me of my first major flare-up. And I don’t want to go down that path of being sick for months, ever again. 

My 2016 Post.

I haven't written one post in 2016. My bad. 
A positive reason for this though is my condition is (mostly) being handled. So there hasn't been a need to write anything. 
I've also been busy this year: I did my honours project, I've been going to work, I go out with friends, and even have been going on dates in 2016 - that's cool. 
I'm still on Prednisone - didn't think I could be on it for so long, but here we still are. 
And I'm also taking Puri-Nethol - which last week got upped, so now I'm taking even more of it. 
My dosage got bigger after I saw the GI last week. I won't lie; I was pretty disappointed when I found out that my Puri-Nethol dosage was getting bigger and not stopping all medication like I hoped. But as long as I'm mostly healthy that's the important thing, right? 
In 2016 I did my second endoscopy/colonoscopy in my life - maybe a post on that to come later...or on second thoughts, maybe not. 
I'm STILL trying to gain weight - at least I'm not losing anymore so that's a positive. 
I received news that one of my friends might have IBD issues - I'm hoping they'll be OK once they have their procedure done. 
Anyway, sorry I haven't been around. But then I'm happy that I'm healthy-ish. I'm sure I'll be posting more...did I ever tell you about my holiday? Ok, I should do that if I haven't! 

Hope everyone has been well.