Update…


I have literally 0 energy left to think of an even semi imaginative title, sorry. 

So went to doctors today because I have the worst sore throat, is really affecting me and now waking me up at night, as is the cough that accompanies it. This is not only wearing me down – alongside the headaches too- but is just adding to my general stress and anti-wellbeing. It also means I’m not / can’t take my humira injections whilst I’m ill, which means fatigue is currently kicking my ass and I’m feeling generally worse 😦 anyway I explained all this to the doctor who booked me in for bloods next week, and gave me some antibiotics for my throat in a attempt to get it sorted quicker. 

I am FED UP of being tired. Bored of being ill. Done with crohns and all its side effects. I have been at uni for just a few goes today and I’m done in, how am I meant to cope with a job and a social life? 

Needing a little boost today 😦 

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

 

Colonoscopy #4 done and dusted


abd at age 22 as well, it isn’t fair. 

I’m back at work today and so shattered and tired and shaky I could cry. It took all my energy to get me here and I can’t cope with actually working and the thought of physically trying to get myself home again makes me feel ill.

I really struggled doing the picolax prep this time around, feeling dizzy and sick and helpless and more than anything terrified about the future. But it came anyway, the big day I was both dreading and wanting to avoid and the day I wanted to arrive quickly so I could better understand my insides. 

It went well and awful at th same time: the end result is that the humira is working, I did it. I got rid of the ulcers that had re arrived. They took biopsies to check at a cellular level , but otherwise it’s a thumbs up! I know I will be more pleased a out this when I feel better, but right now I’m struggling to even hold my hand up to type let alone think about future implications. 

However, it hurt. I felt the drug go straight to my head and welcomed it, the colonoscopy had hurt before so I was happy for any relief. But it was nothing like this, it was so painful and uncomfortable and make me hurt and cry, and it scared me. Apparently my bowel kept stretching or something which made it painful for the camera to come around.  The weird thing is I am still struggling with things like fatigue, so am going to experiment with my medication (my doctors trcommendation) to look at seeing if I can get rid of his fatigue. I hope to god it works.
I am so tired and so shattered and I just need a day off. I need a day where someone just cares for me and hugs me and looks after me. I need a recovery day. And I don’t get one, and that is terrifying. Although, my boyfriend has been amazing. He came down both days to be wit me before and after work and put up with my awful company just because he knew it would make me feel better. He can’t even know how much that meant, what a difference it makes when so often with this disease you feel alone.

I am sat here trying not to cry. I just want to go home and have a day to get myself together. I don’t know how to get through today. I am not strong enough o my own.

H x

Whale woman reporting for duty 🐳


Literally. I can’t even. The tiredness. 

I am trying to lose some weight, less snacking, morr healthy food etc. Like three weeks in and nothing, no change. Still the heaviest I have ever been, still waddling around feeling shit about how I look. And that’s freaking depressing and annoying! And aside from that I am wiped out… I KNOW I probably seem like I moan about this in every post. But really. I was in bed by 9 last night having had a shit emotional and tiring night including a humira injection – which really put a damper on my amazing weekend.
I feel shit. I have no energy. I have been at work for 1.5 hours and already can’t keep my eyes open. I got shaky just walking to the station. My eyelids feel like lead and just contemplating how I am going to get home makes me feel awful! When I feel like this I just need energy, regardless of what form it takes. A salad won’t keep me going, I feel like I need a fizzy drink and a chocolate alongside it to bust me through this day. Oh, what I would give just to have the day in bed. 

On the plus side. I have quit my job! Officially going to be a masters student! Isn’t that crazy 😮 

Big hugs to everyone who needs one 

H x

I just want to hide away


fatigue can p*ss right off.

I am always hesitant to say that that is what I am suffering from because sometimes I’m just normal tired. And that’s fine. But I felt so exhausted yesterday but still went down to Southampton on a girls road trip to see our old house mate and go shopping; and I am so so glad I did- it was such a happy lovely day. But I got tired at about 5, and I mean struggling to open my eyes tired, not haut a bit sleepy

Now it’s nearly 1pm and I can’t get out of bed. I haven’t eaten or drunk, I just don’t want to move. I am fatigued and my limbs are heavy and my eyes feels like lead and I just never want to move again. But I have so much on in my life what with boyfriend, and not seeing family and trying to split time between mums and dads and trying to decide in a masters and to tidy my room and sort my washing for work next week- but I just can’t face any of it. Add it in the random bouts of unnecessary crying and the slight feeling of self disgust I am having about my looks / self confidence right now all in all it isn’t a good day. 

😦 

I have my colonoscopy next week so am looking forward to getting some answers! I have been feeling a bit sick after eating recently, so I am hoping that is just bad luck and not anything more – but I will just be glad To know! 

Hope your all having happier weekends than me

H x

Family are everything 😘


so after my rather panicked last post here is a quickie (cheeky!) to fill you in on what has been happening …

I was all ready to hand in my notice on Friday and just dive in. For this masters; to just do what I want rather than maybe what is sensible. To do something that scares me and is a risk; rather than something I know I can safely keep doing.  Anyway I let mum know and she was just like don’t do it, not sure we / I can afford it. Sh*t. I didn’t know what to do, it really threw me. Why didn’t mum bring this up at any other time in the process? Anyway it knocked me off track for Friday, as did boyfriend drama (my period hormones kicking in at juuuuuuust the right time :/  ) although I think after talking to my dad she may have changed her mind. But she is right. The debt is scary. The cost of living in London and doing a masters is terrifying. Can I do this masters and juggle my social life, volunteering and a part time job? Will it be worth it? God I wish I knew.

Anyway I came down to my boyfriends Friday night and had a few hours of bumming around before he got home from rugby, and as annoying as the plan change was it was nice to have some time to just gather my thoughts back together and just pootle around on my own. It is scary how much I rely on him, how being around his calm self really sorts me out when I am in a flap. (I know, cheesey much! And FYI I still haven’t plucked up the courage to show him this, so the compliments aren’t even jut for show! 😉 )

  Then today we got up and watched some TV before shooting his air rifle at the bottom of one of the fields at his house (I managed to miss the paper target every single time!) then we had a nap – since he was tired but considering I am due my injection and also messed up last week, my tiredness is getting pretty Crohnic too?! Although – side note- not feeling much worse than normal weeks considering the catastrophe that was my last injection! 

Anyway; then at half 3 we left to get a train, no sorry; a LOT of trains (!) into London to see my family for a dinner. We are in route home now and due to arrive at 11.15, after 5 hours in the trains in total! Normally I would have given it a miss considering how far away we were, but my Grandad’s sister was over from Israel as was her husband and a friend of my grabdads from his childhood; and I’m not sure when I will next get to see them again, so it meant a lot. One thing that did wind me up was hearing my mum over dramatically tell the story of xrohns and how I am stuck with this Crohnie illness and got rushed to hospital and the operation etc; and that bugs me because it isn’t a story In ashamed of, but it isn’t what I want told to people as we meet them; it isn’t something I want to be judged or defined upon. I want to be treated like everyone else and it be my decision as to when and how I introduce my crohns. Far be it that I am EMBARASSED, only the night before I spent a good hour chatting about it all with my boyfriends mym, I am totally open- but it should be me who picks that moment. Anyway. 

I am sat in te train trying to keep my eyes open., feeling tired and stressed about more travelling and family visiting tomorrow, as well as the dreaded injection and masters decision making. I am tired and a little overwhelmed. I wish I could do things just for me and not for others sometimes. I wish I could spend this long weekend at my boyfriends curled up with him and recuperating, with no pressure to do or be anything I don’t want; but I can’t, such as life. 

This is a post from one tired but happy, sleepy but satisfied, and stressed but determined little Crohnie. 

H x

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image

Just an add-on to yesterdays post,  this is my right arm yesterday with the cannula in – the first in my left was unsuccessful and is still painful today :/

I sent this as a snapchat to a few of my friends who wanted updates on how yesterday went and I was too shaky, nervous or sedated to type properly – so a quick snap was perfect!

Something that made me sad, but also made me laugh ; was that so many of my friends were grossed out ir shocked by how medical it looks- in a hospital gown and bed with needles taped into your arm. Yes jt isn’t the nicest sight, and Im not exactly the biggest fan of it- but I am so used to it now, so used to hospitals and the procedures and the rest that it seems not so bad to me. It saddens me that my life is just that little bit different to all my friends in that this scene is a part of my life and one that is still so alien to them.  This “casual-ness” (sorry no idea of a better word ahha)  on my part towards the procedures backfired a little bit yesterday when I acted fine but then reality hit me about two hours before the colonoscopy and I felt so sick and shaky- putting on a brave face is fine but I need to remember to allow myself a panic and time to prepare!

H x