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

A brief chat about that dark and twisty place

Picking up my phone to check the time – 7am – I resign myself to the fact as I’ve been up three times since 5am, I probably am not going to get any more sleep.

A deep sigh fills my lungs and roll myself out of bed. What to do? Stretching, I decide that instead of going for a swim in the afternoon, I am going to go for my first run since god knows when.

In Melbourne I used to cycle everywhere and run around the botanical gardens. Since coming back to the UK I managed to run until the early new year but became so exhausted that any exercise outside of work was just impossible.

Putting my gear on, I head out into the early day and smile as I slowly start to break into a gentle jog. It feels good to have my feet hitting the pavement once more. A few months ago I couldn’t even walk up the stairs without feeling sick, out of breath and having to rest at the top of the stairs. It’s crazy to think how far I’ve come and only looking back can I see how sick I was.

Unfortunately this is a cycle that I have grown quite accustomed to. Periods of health, periods of just getting through the days and periods of debilitating illness. It’s a horrid cycle.

This morning was the first for a long time where I felt alive. It has been a horrid, turbulent few months. Months so dark I was unsure that I would make it. Shit. I am aware of how dark and twisty that sounds, but I have to be honest because no one talks about how hard it can be. We all show the brave face, how much fight we have in us, no one tends to talk about the dark and twisty hole you can end up in.

It’s not fair, you’d hear me say to my step dad. I just don’t get how I can go through and get a grip on one chronic disease to only be dealt with another one. Why me?

There isn’t an answer for this. It’s just the way it is, but boy did I feel sorry for myself. 27, a bowel disease, no large intestine and now a liver disease? Come on universe. Stop taking the piss.

Do I wish things were different? Of course I do. But I can’t do anything about the way the cards have been dealt. I have to make the most of the situation. There were times that I would lie in bed having not had any food for 2 days because in my mind I just could not see the point. Why try? I’m just going to get sick again. Why go through the cycle of trying to get better when I’ll just end up here once more. What have I honestly got to get out of bed?

Well, for starters, my beautiful family and friends who have been an immense source of support and encouragement. But really truly? Me. I needed to get out of that funk for me. I could let this darkness consume me, I could let it engulf me or I could at least try to fight it. Slowly I started to do things. I’d get out and go for a walk around the park, no matter how exhausted I was, persuading myself that if I still felt awful I could sleep when I came home.

I went for coffee with friends, I started to go to exhibitions and I was finally able to concentrate long enough to read.

I told my doctor how low I was feeling and she put me onto a counsellor and I started taking Cognitive Behavioural Therapy sessions.

I started to swim – I say swim – attempts to not drown.

I brought things from Lush because they smelt good, I brought flowers because they made me happy. I made tea. Lots and lots of tea.

There is no formula to try and get yourself out from that dark, twisty hole. There is no guarantee that it will work. I’m still trying, there are days where my anxiety comes and smacks me in the face, a cruel reminder that I’m still fragile but I’ve come so far from where I was.

To anyone that is going through this at the moment I have this to say to you.

You have to believe in yourself, no matter how hard it is. Your life matters. You have to fight for it, it’s not fair and it’s not easy but the world would not be the same without you. Hang in there beautiful. It’s going to be okay. I promise.

A guest post with the amazing Thaila Skye

After my first guest post for Me and IBD, Thaila added me on twitter. My word, I’m so glad she did.

This lady is such an inspiration, her Vlogs are fantastic, creative and informative. She’s a great advocate for IBD and raising awareness.

Thanks Thaila for agreeing to do this interview. I’m going to stop now because I’m gushing… Read on people, read on…

Continue reading…

You have to listen

Recently I spoke about how well I’m doing within my running but with the good, evidently comes the bad and I want to tell you about that too.

I was aiming for my longest run. So far the furthest I have gone is 4.51 miles, which is about 7k and my aim was to go just a little bit further.

Though the majority of my runs have been quite tiresome, I thought it was a reasonable goal. I’ve been getting a teeny bit faster with my 5k’s and thought a long distance run was in the cards.

Continue reading…

Don’t let it win

Remember, waaaaay back when I asked all you lovely people to help me raise money for Crohns and Colitis UK because I was running a half marathon?

I’m pretty sure you all must be wondering what happened.

Well first of all I’d like to thank you, because without your support I wouldn’t have been able to raise the figure I did which was

£410.00

How amazing is that?!?! That’s just a little bit more money to fund some research into this disease. A little bit more money to help find a cure. A little bit more money to someone who may have this disease so badly that they can’t work and have no one to support them, that little bit of money might have gone to help buy them new bedsheets, or something that they really need to make life just that little bit easier.

So, with every fibre of my being, I thank each and every one of you who donated. Each and every one of you who promoted my page to help me raise this money. Each and every one of you who read my blog and may have thought a little bit differently about IBD and how people live with the disease. To each and every one of you who told your friends about what I was doing.

Thank you so much.

Did I run the race in the end?

No. I didn’t. Because guess what? The amazing disease decided that it didn’t want me to run the race and I, once again, flared.

I was um’ing and ah’ing about whether I would run the race anyway because it was the weekend before I flew out to Australia.

I had been struggling with getting training in because I was tired and the more mileage I would do, the more exhausted I became. I was worried that I would finish and complete the race but ultimately put myself back in hospital.

Now I have been wanting to get to Australia for years. I had made it a goal and it’s all I thought about. It was a very hard decision not to run the race because I really felt like I was letting people down. Everyone who donated, wanted me to run the race, how could I get people to donate their hard earned cash and not run?! I felt like I was cheating people and I did not want to do that.

Then I spoke to a friend of mine, who also has Colitis. This lovely man had donated a lot of money for what I was doing, and I spoke to him about how I felt and he made me see sense.  Maybe it was the fact that he had put the most money in and he didn’t mind that I wasn’t running, or that he too had the disease and so knows where I am coming from.

Australia was my dream. How would I feel if I couldn’t go? I had finally booked my tickets and after three years of wanting this so badly, I was going. How would I feel if I had to wait another year because I ran a race that made me too sick to go?

I really appreciate the talk that we had, most probably more than he realises. Essentially I still feel bad that I didn’t run the race, however, I made my dream and am now living in Australia. I raised £410.00 for something extremely close to my heart and I will run a half marathon one day. I will run that race eventually for all the people who donated. I was just too unwell at the time.

That’s unfortunately a horrible part of having IBD. You make all these plans to do things, and then it rears its ugly head and pulls you under. It says, “Oh, you wanted to do this today? Well I say no. I say that you’re going to spend an epic time in the toilet today”

And bam, there you are in that toilet whilst IBD is laughing at you, and you’re sat there with a sore butt from too many toilet trips and a seriously messed up heart/head because you’re really gutted you couldn’t do whatever it is that you wanted.

As much as I try, I can’t plan my days. I can see this as a negative, or I can put a positive spin on it.

IBD forces me to take every day as it comes. Sure I do try to plan, I’m a Virgo, planning is ingrained in my soul, but essentially it makes me a lot more easy going.

I enjoy and appreciate the good days when I am feeling healthy enough to do what I have planned.

Essentially, that’s what you must do when you have a debilitating disease. You must take the bad, and find the positive, or essentially the bad will swallow you whole, and we don’t want this wretched disease to win now do we?