I know I have been uber rubbish about blogging recently – mainly for the simple reason of lack of time and motivation. I am feeling super crap about myself at the moment, the way I look, my insecurities, my total inability to do something which at all seems productive.
I had a big project due on Saturday, which involved helping to plan a festival (of LEARNING before anyone gets any funny ideas about my course 😉 ) and despite the stress that actually really helped to keep me focussed and motivated, and something to do everyday, with people to see. Now, not so much. Plus, I recently found a hard lump, which the doctor said was the start of an abcess, and that proceeded to pop on Saturday night- which was just massively embarassing and inconvenient seeing as I was at my boyfriends, and had no idea what was going on. It ended in a situation I never want repeated, with him having to help me clean up, not something I am proud of , and in that moment I really felt the crushing huge-ness of this disease, and everything that comes with it. Whatever, turns out he is stronger and better than I am (which i already knew, obviously!) and took it all in his stride, and I guess onwards and upwards!
Just a post to say, I am still here I guess- and I rpomise to get better at writing, and keeping you up to date. Currently, I am trying to write a dissertation which is just not coming together, trying to find a job in a market with none, and balance general feelings of invisibility and usefulness, and my personal insecurities. So, all the fun is being had over here.
Chin up, stay strong, we can get through these times (y)
Me again – once again in a bad mood, feeling down due to tomorrow’s ordeal. Have ANOTHER colonoscopy- maybe my 4th or 5th one? I am only 22- most of my friends don’t even know what one is, let alone are a regular at it. And that, is just depressing.
Its a glorious day outside, and I have massive deadlines due tomorrow as well (such great timing) but instead of being out in London, in meetings, working and enjoying the weather with my friends – I am at home, in my PJs, in bed, with the worst headache, no food at all for the rest of the day and only a glass of water and a snoring cat to keep me company. I am miserable. I wish this wasn’t what I had to go through, I am terrified about what the results will be – is it getting better? has it got worse? do I need new medicines? Which one? Do I have to keep self-injecting the humira? please, no. I don’t even know what to expect – I have had feelings recently that it may be playing up again, but what do I know, eh.
I hate this prep, I am not sure what I can and cant drink, I am not sure what counts as solid food, I am not sure if I have the preparation that literally makes me gag so hard I want to vomit whilst I drink it or the other one which I can cope with – that will be a fun surprise for me at 2pm. I am sat here, failing to do my work, all alone and feeling like absolute misery.
Recently I thought I was more ontop of this illness, but no. Apparently not. Crohns has a way of popping up and reminding you that you will never be fully incontrol, and its stupid to think you would be. I don’t need this crap right now.
So, 1-0 to Crohns for today.
Hope your having better days than me so far
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!
I think it’s pretty obvious what this is about haha!
Just an update that I have felt pretty poo at points this week, but made it through! Tonight after work am heading to pizza express with a group of friends and my boyfriend for a dinner to celebrate my birthday tomorrow; then a cheeky pub trip added in too! So excited and be so nice for my uni friends to meet my home friends 🙂
Tomorrow not got much planned aside from wake up, do some presents and go bowling with my dad and family and then in the afternoon will go to mums to chill out with her and my auntie etc – the pressure of having divorced parents and facing two bday celebrations haha!
Have another hunira injection in Sunday, and it sounds stupid because apart from the first time I have always done it with either my dad it boyfriend and now neither of them will be there to hold my hand! So scary??
Next week we are away for a week, and I truly cannot wait! Although I hope my tummy behaves and I can avoid being hit to hard with the sun. I can’t really remember the details but I know on hunira especially you have to be careful with sub exposure. Before any of you form an uprising, I WILL Figure that out before I go; I think it’s important to know these sorts of things – but you can’t blame a girl for not remembering every warning and side effect of every medication; I have been on so many! As long as you are responsible and do the best you can, nobody can ask any more
On that note have had to set an alarm on my phone for 740 (then I will definitely be home) to remind me to take my tablets; what with the new work routine I kept forgetting. Oops! Back on track now!
Hope your all well and looking forward to the weekend
I am ill. Still. Again. Continuing.
I have been ill for at least the last three weeks – before you panic I mean “normal person ill” not Crohns ill *. I have a constant cold, cough, general un-wellness. Not fun!
I also developed these weird lumps down my neck, which were a little worrying – so I went to the doctor who basically said it was because my body cant cope with being ill (no surprise there then) and so my glands weren’t draining fluid and it was kind of bubbling up. I only have two I can feel, but she said she could feel another 5 or so…and now my mouth is hurting so I cant open properly so I think that may be linked to this damn cold as well. She said when you fight it off next week these will drain – try three weeks later, COME ON IMMUNE SYSTEM.
I am sat here typing and eyeing up my hairdryer, with fingers that are turning blue with cold I know I am going to head to the hairdryer, plug it in behind my bedside table and blow dry away the cold! Added to this I also have two big deadlines tomorrow (probably should be blogging today, but some things are more important 😉 ) and then lots more for the start of December – PLUS my dissertation stuff. STRESS MONKEY.
My friends and boyfriend are doing a brilliant job at looking after me, but its not quite the same as lying at home on the sofa with mum doing everything for me, is it now 😉
Oh well onwards and upwards with the health (I am hoping)
Hope you aren’t all suffering in this new bout of cold.
* sometimes its hard to not just dismiss everything as being nothing, my scale is 0=Healthy to 10= Crohns, ambulance operation. Hard to find a middle ground.