im done with all the nice talks and the motivational posts, they are not okay for today.
Just finished university forever yesterday- happy days! Went out last night and woke up this morning with crohns pains live and kicking ; and for anybody reading who thinks I’m overreacting with a hangover you have quite clearly never experienced the discomfort and quite specific painful feeling to which I am now referring. I don’t know if this is linked to starting Humira, or if it is because of the stress of exams or what- all I do know is it is shit and so freaking unfair.
My best friends birthday is tomorrow and our mutual French friend is over visiting so I made a massive effort to come home early to see her but felt so nauseous, shaky and fatigued that I didn’t even make the whole walk into town and have spent the afternoon alone and crying, in the bathroom and snuggled up and generally feeling more than a little sorry for myself. How am I meant to do the next two birthday nights? I got tired just walking upstairs to get a pillow.
Life feels so so so unfair right now and I’m not okay with this. I have too much on and I can’t cope with it all. I can’t. It’s not fair. I want someone to help me. Do this with me. Apparently any writing ability I may once have possessed left me in my anger because this post is just a repetitive scrambled up mess – but then maybe that pretty accurately represents my life.
Could do with some serious hugs and TLC right now
so I know my posts have taken a bit of a negative turn in the past few days, but I’m having a bit of a rough ride of it! Hopefully after Wednesday and the end of my exams I will feel s little more in control!
So I had my Humira loading dose in Friday (see my last post for the fun filled details) and I was really proud of myself. I did 3 of the 4 injections myself, and despite crying through a mixture of pain/shock/nerves/ denial I just did it, I kept going and did something I wasn’t sure I could do. And I’m so so proud of myself for that. Hopefully one day I will be able to video/ take some photos of the humira injections for anyone wondering, but for now I really have to focus on myself and getting used to them!
Anyway I digress, none of the injection sites have so far come up with any reactions at all, aside from the smallest bruise on one of them- and none hurt either. I also was lucky enough not to feel any of the describes symptoms in Friday evening ie headaches, nausea, feeling like I had the flu etc. however last night (sat night) I felt so sick lying in bed, had to prop mysf up on pillows and just focus on lying still and not being sick; and lying here now I sti feel sick and my stomach just feels wrong, uncomfortable and sore. Sigh. Is this just crohns it is it a side effect? I’m not really sure. But it doesn’t feel gret 3 days before my last exam. Not great at all.
so today I have had a massive hospital calling stress, an exam and my first 4 humira injections. Please just let it be over! Think the exam went well, which is good because I really needed it too! The humira…haven’t been so scared in a long time. Had 4 injections as my loading dose, bless two of my housemates who were on call for hand holding and general questioning and support! Surprised by quite how much the injections hurt, seriously quite painful and me gasp out loud in shock and pain- but they are done, finally. I’m on the road I hope. God, it hurt. It really did, but at least it’s over quick! Haven’t had too many side effects at the moment, fingers crossed it doesn’t change! Onwards and upwards H xx
got a call from the hospital to say my TB results were inconclusive, most likely ‘because of the steroids I’m on’ although I haven’t been on any for 18 months or so….so they actually have no idea why it didn’t work. So. Great.
Back to the hospital on Monday for more blood tests. And in all day Tuesday to wait for Humira and then again on Thursday to learn how to inject myself. Great. Don’t forget the exam on Fridat and then Wednesday, all amongst revision, filling out special applications form and trying to cope with everydayife.
I feel crap. Life is unfair. Lying in bed crying and ready to sleep. I’m sad. I want my body to work. Please. Just for a little bit.
I know self pity isn’t a pretty look, but it’s stuck on me right now. Sorry.
Having a down one today, as the title might suggest!
I am just feeling like life is SO unfair, and I needed a moan. Why is it that I cannot sort out my future, my job, my place to live? why is it that this stresses me out so much? Why is it that I have exams that run on so late? Why is it that I have to feel shit whilst I am working? Why is it that Crohns is affecting me now, I needed a longer break. Why is it that because of being ill I have extra work to do, like special considerations? Why is it that I am somehow meant to come to terms with my new medication, with injecting myself all whilst completing my third and final year and somehow do it all with a smile on my face.
The Humia arrives on Tuesday, and the nurse should come before Thursday. That makes it less than a week today, right on exam season. I cant cope, its not fair. I am tired, I cant work, and all I want to do is cry. I have so much on in my life, and nobody has thought about all the other things that come with it . I am tired and scared and feeling sorry for myself, I just want a hug and to be wrapped up in a blanket and forget all of this.
Just. So. Tired. All. The. Time
had 10 hours sleep last night, been awake for just under 2 and my eyes are already so heavy I am struggling to concentrate and my body feels like it has been filled with sand and therefore weighs ten time more.
I woke up this morning so positive, so confident that I need to stop wallowin and push forward and crack on with my revision and beat this disease and get on with my work – and already I am faltering. I am struggling to stay away and its really getting me down, how can it be this badly affecting me already?!
From one tired and angry little person,
So I got my blood results back and they were basically normal – yay. But then on Monday I was feeling really bad, my stomach was sore and sensitive and I felt so sick; not a good day at all. Unfortunately struck at the worse time, what with dissertation panic and all my other university work. I had to retire to bed for the evening and call upon my lovely boyfriend to come down for the night for get-better-soon-snuggles and a quiet night of TV in bed. Luckily it made me feel better by Tuesday, and I just felt a little sorry for myself and sore the rest of the week, and if im honest a little shaken – it was the first time I have actually felt, really, “crohns ill” since my operation, the first time I can definitively say YES. that was crohns. And that my friends, is more than a little scary.
I went ahead with my appointment with my specialist on Friday (god, was it only yesterday?!) but been in denial about blogging the results – infact I refused to fill my mum in on any more than the basic details because I cannot face going over them repeatedly – passed her questions on to dad for answering! In essence, Crohns is most definitely back and unfortunately I am starting to feel its effects, and this means It is probably only going to get worse. Luckily this time round it has been detected and understood a lot quicker (through the colonoscopy, seeing a specialist and my own understanding and experiences) which means we have time to act quicker before scar tissue forms as it did before. My doctor is AMAZING or at least I think so – and he wants me to not go back to having “duvet days” but to carry on living a daily life which is normal, and as he put it in- not just look at the cost on my body of having this illness, but the cost on my life. Those experiences you miss when you are ill or cannot enjoy – and he wants to stop this happening again, which I agree is a fantastic aim; I am just in denial about needing a step up with my medication.
I currently take 150mg of Aathiaprine a day, and am now commencing the pre-test to begin Humira (spelling?!) which is something I have wanted to avoid. Both Humira and Infliximab with their injections / infusions seems a lot more serious, more scary, more like I am ill. and I have TO INJECT MYSELF. I hate needles and injections enough to begin with – what if I cant do it?! what if it hurts too much? what if I do it wrong? ….what if it doesn’t work and this is just a crash and burn back to being so ill like I was last year. What if nothing I do changes that? I am terrified. and scared. and I know one injection every two weeks is worth it, if it can stop crohns then that is amazing- but what if it cant? what if its back forever and maliciously?
I know that seems over the top, and I needed to get that out but I also need to focus and BE STRONG. be strong! I have so many amazing people in my life that can help me, and for that I am grateful! For now I need to focs on the blood test, and chest scans etc and get it organised – and RESEARCH RESEARCH RESEARCH. I think it is so important to understand what you are pputting into your body! So…here begins my journey of Humira. I will keep you updated as I go ; heaven knows I wish I could follow someones story who has been through this already – so maybe I can provide that for other people . Fingers crossed
From one very very scared person