Little life update…


Ciao amigos,

Hope you are all well. Or at least better than me…for now…since I am currently stuck at home with the flu (or something super similar). LAME. I am a little concerned about managing to fight this off, especially with my rubbish immune system (thanks, aza). I am due to go away the start of the second week of February, and really want to make sure that I am feeling better by then, because I know that normally I just drag things out, and continue to feel ill for longer period of time.

 

I am not really sure where this blog is going to go from now on, obviously I will continue to track my crohns journey, but I am not sure I can keep blogging about healing over my breakup, because its just so messy and complicated.

With regards to Crohns – I have a check up appointment on Wednesday, and hopefully that will be helpful, not only to be able to check in with the specialist but also to see if there was anything new spotted in the camera test – which I assume there wont be, or else they would have contacted me earlier. The hospitals have been so unreliable and badly organised recently, I am concerned that they aren’t going to have all my test results, or it wont be a helpful consultation, and in which case I am going to kick off a bit – this appointment should have been March last year but kept being postponed because nobody could get this one test organised, so if by now (the test was about 3 months ago) they haven’t got the results transferred, I will be so so frustrated! I think I an still in remission, I am not feeling great – a combination of stress, work stress and illness; which I think is all a bit much for my poor body, so am glad I have the day off today to rest and try and heal a bit more!

With regards to my break up – its been 9 months – how crazy! Enough time (theoretically) for my body to make and grow an entire functioning human being, but not enough for my heart and head to heal fully – how is that possible!? Life is better, and smoother, and less focussed on him and my out of control feelings around him, and now I can go days without thinking of him, and it just is such a smaller part of my life.  A fleeting thought, a passing memory, but nothing as important as it once was, which in itself feels a small miracle. I have had a bad few days recently, thinking of him and being unrealistic, and I think the fever hasn’t been helping with the vivid, miserable dreams! But I think I need to just look back and acknowledge how far I have come – maybe its taken me longer than most, maybe I haven’t always handled things the right way, but I am moving forward, and that is the main thing. I have been on a few dates, but nothing major, and with nobody special – and I am feeling ready for a boyfriend again, for that intimacy and closenss, I just cant be bothered with dating! I just want to find a best friend first, and have something go from there- which I know is so rare, but it is what happened with him, and it was perfect. I am having to try really hard to keep on top of my brain, and keep quashing these stupid, harmful memories of him.

So I had a few issues with mutual friends of his, and that hasn’t really changed. I have tried a few times to build that friendship back up, but it isn’t happening. For now, I texted them both and just said that I love them, and want to go back to how we were, but that cant happen until I genuinely accept and am okay with their choice to remain such close friends with him, and honestly, I am not there yet. There is no point pretending, and trying to suppress the feelings because they will always be there silently in the corner, so the only thing to do is work through it, and once I am okay with it, the friendship can go back .Ultimately, to be honest I think they are closer with him now, than with me; because he would never have faced the issues I did, he was clearly over me the minute he ended that phone call to dump me- in fact I think he had been over me for a while before that, so for him, it was never a hardship. Whereas I needed to cut every possible aspect of contact with him out my life, because its the only way I could progress to where I am now, and hopefully keep it going. Regardless, I think I am dealing with it the most mature way I can, with everyone knowing where I stand and being honest; but to be honest I think those friendships are gone, hey are lost, and they cant be got back.

I have also made some new friends, and strengthened my friendship with lots of other people, and experienced things in lots of new places. Life is good, but hard, and funny and interesting but difficult and challenging and all these things. Finally, I am back to being able to see more of a balance. Long may it continue.

H x

 

A little update from a very tired someone


Ciao amigos,

 

I went down to Southampton for another check up with my specialist- involved waking up at 6.15, driving for 2 hours and then a 15 minute chat before another repeat; in total I was out the house nearly 5 hours and its completely wiped me out for the rest of the day!

He in essence said:

– CArry on with both Humira and Aza because although I probably only need one, because signs came back so quickly both is advisable

-Stay on them both until at least the end of my masters, to try and stop any disruptions affecting my work

-If the tiredness gets worse it may be due to things like “the part of me that got removed is meant to soak up and re-cycle bile but because its AWOL there may be excess bile which could lead to some of my discomfort and the grumbling noises” so this could be treated

– Get blood tests every 3 months for check up and monitoring

-Going to transfer doctors to one right by my uni so wait to hear from them (Unlikely that’s going to happen any time soon, lets be honest!) which is exciting but im worried to leave him behind, he is the best doctor I have ever had!

-Go see the dentist with regards to my teeth / gums which keep bleeding 😦

 

 

Anyway, I am not zoned in enough to type anything else. I am feeling a little sorry for myself, tired and a bit fed up (whats new?!) so I will stop now rather than fill this post with moaning!

 

be Happy

H x

 

Am I In the Wizrd of Oz?


The road I am on now isnt quite as exciting as the yellow brick road that dorothy got to follow, but I feel as if I am on my own road to discovery along the way to getting better. Just like dorothy along the way I have met different people and challenges, and each have changed me in some way and helped me towards my end goal of good health!

 

I met with my surgeon yesterday for a post-operative catch up, and he was very pleased with my progress. He says that I can eat as normal, and I had a blood test to check all my levels now, especially since i started back on Azathriaprine a week or so ago.I now dont have to see him again, I just will meet back with my consultant at the end of January when I am aiming to return to university. He explained that the main long term potential impact of the surgery is that the area removed in the operation is the one responsible in the body for the absorption of B12, which can cause anemia and illness if you do not have enough in your body. I have already been told I was slightly anemic, but that due to larger issues I may as well ignore it as it has little effect on me, so this is something else to watch. Apparently our bodies have a reserve, so I will not see in blood tests for a few months if this will have an impact on me, and if so I can either take supplement tablets or have injections every few months to give my body enough to be healthy. The surgeon also explained to me, in great detail and very patiently, that at the moment I have no symptons and there is really very little that i can do to prevent crohns coming back, I have to just cross my fingers, touch wood, wish on a star, and everything else under the sun and wait…and hope. Apparently there is little diet-related control that will help, and he truly believes stress has little impact. He basically said go, live your life as much as you can and we will deal with it if and when it reoccurs. He was very honest, saying because of how young I am there is a good chance that it will re-occur in my lifetime.

 

It is weird, in some ways I am glad that there is very little I can do to prevent Crohns returning ( I am expecting some flare ups, but I hope it will never become so long term again). THe biggest thing is to not smoke, which is fine –  I never have done and never intend to. It is weird, on one hand I can go, live my life and “ignore it” so far as possible and just wait, maybe I will be lucky maybe I wont, I ont have to drastically change my lifestyle or not eat certain things..but on the other I wish in a way they said “if you never eat steak again you will have a much better chance of not having it strike” at least then i feel as though I have a bit more control. It is like, in my head, how my friend views taking the Pill – it is her reponsibility and her control, she knows she takes the tablet at the correct time every day she knows what to do if she misses one, she gets more everytime she runs low and understands the risks and can control her birth control that way – I know that sounds like a weird comparison to make, but I wish I had that element of control over myself and my life and my health, but I have to accept that I just dont, and I cant. Scary, huh?

On a more positive note I am feeling much more human and better, and am able to eat more and walk about more. My biggest issue is just being drained of any energy very quickly, but I am learning to accept that and embrace it nap and relax, soon enough I am determined to be back on top and better.

I am afraid this post has little direction, apologies. I think it is important to air your thoughts, and right now mine are twirling round in endless circles, especially regarding the lack of control I feel in my life, its not an easy thing to swallow. Aside from that I am marching determinedly down my personal yellow brick road, with my friends and family around me. Yes, some days I get sidetracked and sit on the virtual kerb for a cry and a bit of a tantrum at the unfairness of it all, but soon enough I will be back on track and closer to my goal. 

 

H x