Curve Ball

Bloody hell it’s all popped off innit?!

In the last few months I have gone from no job, trying to plot ways to kill my landlord, generally meandering aimlessly and trying not to have anxiety attacks in my local sainsburys, to moving house – but still trying to plot ways to kill my landlord- finding and obtaining work, moving from that job to another, starting some voluntary work for Crohn’s and Colitis, being out till all hours seeing friends and generally having an awesome time.

As previously mentioned I was in a bit of a dark and twisty place but things have levelled out… Well in fairness they’ve sky rocketed into the other extreme of being so busy that if I lost my diary I would sit in the road and cry.

So imagine my surprise when I received a quite ominous voicemail from the gastro consultant who saw me in clinic a few months ago stating that there was something wrong with my bloods and that she’ll detail it all in the letter she was sending me.

Cue me trying ever so hard not to freak out and try to deal with it when it came. Not quite successful. If I could have turned up at her house shouting “WHAT’S WRONG WITH MY BLOODS” I would have. The Gastro team are like elusive mythical beings. Where the hell are you when I need to talk to you? Why do all of your numbers send me to voicemail or leave me on the phone for 20 minutes wanting to smack my head off a wall till I realise that no one is going to answer this phone call.

So I had to wait it out, I received the letter and low and behold, my liver is still trying to make a break for it.

I feel totally betrayed by my body. I honestly feel fine, better than fine, God fine is such a beige word, fabulous? No, too extravagant. Great feels underwhelming. Hmm Amazing?

Do you like the really redundant train of thought I’m expressing here? Also that I’ve wasted a minute of your life whilst you read those sentences? THAT’S HOW I FEEL ABOUT THE GASTRO TEAM!

Eurgh. I digress. Apologies.

So my bloods are weird and they want me to go back on steroids.

Ha.

Hahaha.

No. Way.

You’re going to have to hunt me down and stab me with an IV before I willingly put that into my system.

Wait, I’ve been here before… and I ended up with Jaundice and in hospital attached to said IV.

I retract the above statement. Can I please not have Prednisolone and can we try Budesonide please Mr Gastro sir?

Compromise.

Which to be honest doesn’t seem to be happening with my team at the moment. It’s all “Take this or lose your liver” Scenario. “Take this, we know it works” rather than, lets try and restore your liver but in a way that doesn’t turn you into a psychotic dark and twisty hamster. (see this post on roids for an explanation)

So I was pretty sad, then I was angry… briefly considered the denial phrase but with me that involves copious amounts of alcohol so I skipped that and I’m now at the acceptance stage.

It’s all about management and looking after myself. Which if I’m honest, I’ve been so excited by my life at the moment that I haven’t really been taking very good care of myself. Yes, I know that makes no sense as we all know that I’ve been in this place before with my IBD, yes I am painfully aware that I should be better at this. Stop looking at me with those judgy eyes. I see you. Stop it.

I’m only human.

And I’m young. I want to have fun. I want to do things and I certainly don’t want to feel trapped by my condition.

But as a couple of friends pointed out to me, they’d rather me make a few sacrifices than see me in hospital or not even around.

Sometimes you need a friend to give you that verbal smack across your head. I said oops upside your head I said oops upside your head.

I got verbally bitch slapped. But its necessary, and I know its because they care about me and you know what? I’m so damn lucky to have friends who will do that for me.

*sigh*

Some changes will be implemented and I’ll have a chat with my gastro team, if I can find them, maybe I’ll send a carrier pigeon. Maybe that’s the only way they correspond?

I’ll keep you posted.

 

 

Liver Update

Just a quick update, my liver levels have been consistently normal for the past 3 months. This, my friends is exciting news and I’ll be off steroids within the next month. I’m also hoping that because my liver’s had a break from being inflamed and aggravated, that it will be able to fix some of the damage that has been caused. The liver is awesome like that.

Health wise I have been going from strength to strength. I’ve started exercising regularly and have been socialising like a maniac to make up for lost time. Which, now I’ve had my fill, definitely needs to calm down because soon I’m hoping to be in full time employment.

I need to learn to listen to my body properly because I do this to myself every time I’ve been poorly.

I get sick, I take time off to get better, go crazy with things to do and then end up tired and sick again because I just haven’t paid attention to those subtle clues.

You’d think that having lived with IBD since I was 19 I’d finally get the messages, but I’m stubborn and have acquired a few terrible habits such as not wanting to seem as though I can’t do everything that people my age are doing, and also, just not knowing when to say no.

This time round has been the longest I’ve had to take out from work, even after my operations – which seems crazy – but unfortunately, this time round really hit me mentally and so it took me longer to recover.

Going forward my plan is to try and strengthen my immune system/liver as much as possible so that in the next two years I can come off Azathioprine. Some of you may know from previous posts how much I hate being on medication, so the thought of lifelong medication doesn’t exactly fill me with joy. I also don’t exactly like the thought of being on Azathioprine for the next few years. The drug can cause some pretty nasty side effects long term (I’m looking at you increased risk of melanoma and lymphoma) so the sooner I can get off it, the better.

No doubt I will keep you all updated on experiments.  I did try some Ayervedic practices mixed with some Chinese herbs but as I was on steroids as well, I couldn’t actually see if it was doing anything or if it was the steroids just doing their thing. So I stopped. I still have some left over so may try it again, it can be tricky though because the last thing I want to do is try something that will upset my liver and the majority of my consultants aren’t thrilled with the idea of alternative medicine practices, despite finding that they have helped my IBD quite a bit.

I find it can be very complicated, all the doctors I have come across in London, bar one, are very adamant that alternative therapies do not work and have discouraged me to use any. However in Australia I met a few that were quite open to certain types of therapies and as I said above, it really helped with my IBD.

I would like to research a naturopath because some peeps that I used to see in Melbourne were incredible, but I found them through recommendation, which I have found the best way for alternative therapies. It helps to weed out the weirdos and the ones who really don’t actually know what they’re talking about.

I remember once in London trying an acupuncturist who was mediocre at best but didn’t have a reference to compare it to. It wasn’t until I was taken to one on the Gold Coast did I realise the help that acupuncture can be. You can read the post here.

So yes. In short, things are on the up. I still have a long way to go but I’m getting there, albeit very slowly.

Stay well

x

I’m sorry, I don’t have any glitter

When I wrote my previous blog I was really inspired to write again. I had high aspirations for myself; had made lists. I had loads of ideas on what to write and with the time off I currently have, I was ready to throw myself in and get cracking.
Except the last few weeks have been really hard and I have found myself in quite a dark place. Steroids do not help my mental state, it seems that every course I go on, the side effects are worse. I’ve been on 40mg for the past 8 weeks and I really can’t wait to taper off them. Battling with low moods (and that’s a nice way of putting it) in general is hard enough without medication sticking its unwanted nose in too.

“Heeeeey you” depression eyes me up with a hint of a smirk, “I brought friends”

Anxiety gently shakes in the corner, whilst Medication takes his jacket off and climbs into bed with me.

I protest

“But I have to get up, I need to make breakfast, shower, go for a walk, I’ve got things to do. I don’t need, no, I don’t want you here”

Medication strokes my hair and Depression sits at the end of my bed.

“Why would you do that? You don’t need to do any of that.” He looks at me whilst lighting up a cigarette.

“You can’t smoke in my room, get out, go away” I try to sit up.

Medication puts his arms around me, nuzzles in closer. Depression chuckles, whilst Anxiety decides she wants a piece of the action and gets into bed too.

“Seriously, get the fuck out of here”

“Temper, Stephanie. That’s not very nice is it?” He spills ash on my bed. I sigh and close my eyes, realising he’s not going anywhere.

I would regard myself as a positive person, a fighter. I don’t want to be here talking about all the things that are wrong with me or the things that I can’t do but it seems as though that would be an unfair representation of the illness/struggle.
It is not all motivational pep talks in my head about how I can fight this and how I will get better. The last few weeks have more been on the side of “what’s the point?”
That’s awful! I don’t want to feel like that. I don’t want to wake up and just listlessly go through my day with Depression holding my hand, Medication on my back and Anxiety running in cirlces around me. I’m tired of friends asking me how I am and my response isn’t a positive one because I really want it to be positive, I really want to say “I’m not 100% but I’m getting there”

I’m afraid I don’t have any sparkles of good news for you.

But this is the reality of it and I thought I’d share with you what’s going on so that if any of you are in this position right now, you don’t feel so alone.
How am I coping? Well I’m trying to cut myself a little slack. There is a lot going on, mentally and physically, and beating myself up about not feeling particularly chipper is not going to help me.

It’s all about those baby steps. Small things that help me to feel a little better. That could be anything from reading, a cup of tea or a chat with a friend.
Keeping busy. Or at least trying to. I’m a little limited in what I can do without my body saying “nope, had enough buddy, you’re taking a time out” and sitting me down. Having said that I don’t want to mope around in my pjs all day so I go for walks, take really rubbish pictures on my iPhone, meet friends for tea. We’re always coming back to tea. I research things about Ayurveda medicine and the immune system.

I read lots of blogs and soon I will be getting involved in all things Christmas. Side note. I love Christmas. I used to hide and grumble about not really giving a fuck but truth be told I really love the festive season. Glitter, mince pies and festive cheer. Love. It.

It’s not much, and compared to what I used to do (hold down a full time job and an active social life) it’s pretty meagre in comparison.
However, that’s just the way things are right now. Its better that I accept it than try to fight it and make myself feel even worse. It’s just a temporary state and I’m sure that in a few months I’ll look back and all this will just be something that I went through and came out on the other side.

I’ve rambled enough so I will bid you goodbye but for any of you who are struggling out there know that this too shall pass. Nothing is permanent and hopefully soon we’ll all be back to throwing out sparkles and glitter. Till then here are some things that made me smile recently.

♥  Filter coffee from Federation at Brixton.

♥ Flowers. I went to a flower market recently and brought some beautiful peonies. The day was lovely and I got to catch up with a good friend, drink tea and have lovely chats.

♥ Today some random dude in Brixton looked over at some pigeons, then at me and said “ooo, pigeons” as though I had never seen them before. I smiled polietly, willing the lights to change so I could run away.

“Very spiritual, that.”

A massive flock of them flew into the sky and he goes “oh look, some sparrows.”

No dude, still pigeons. Change, lights. For the love of God, change.