Crohns and Dieting? Hmm…. Day 18, 2017


MORNING GUYS. For once decided to post first thing (I mean, 10.30am, but close enough!). I have decided to try and lose weight, not as a new years resolution or anything (always fail) but just because enough is enough. I want to fit my clothes better, feel skinnier, look slimmer, and generally get a bit more self confidence back. I do want to lose weight, and have given myself a target weight-  but its not really so much about the numbers, as about how I feel about myself when I look in the mirror. I wasn’t going to tell you guys about it, I guess I am kinda scared to admit it incase I can’t reach my goal- but screw it, that is an extra reason to tell everyone -TO MAKE ME DO IT.

Here are some cheeky motivational posts to a) liven up my blog (check – see yesterdays aim of including more pictures!) and b) give me/ anyone else something to push us along on this Wednesday morning

 

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So, there is the motivational part of this post. I am trying to lose two stone by the end of May, mainly be eating better and eating less, and trying to be more aware of the lack of exercise I do, and trying to increase that where possible. The thing is , I really do need a job, I cant spend all day just going on long walks, and I move around way too much to bother buying a gym membership. SO it will be extra walks where I can, stairs not lifts, workouts where possible, jogs where possible, etc. I hope to do lots of sit ups and similar each day just at home to, which I think will help.

My main issue is dieting -with Crohns. Most diets say eat minimal portions (fine) and switch to things such as Brown pasta, brown rice, lots of vegetables etc – all of which is pretty much the exact opposite of what I try to eat with my crohns. For example, if I ate a salad a day for lunch, instead of being super healthy, it would probably cause me issues due to digestion etc – which is just counter productive. I have googled some diets to do (I don’t want a strict diet to follow necessarily, just ideas of better meals) but couldn’t find much. I am going to see my consultant next week, so I will talk to him then too for some advice , but if anyone reading this knows of anything helpful PLEASE let me know, would be appreciated! I am just going to start with: no snacks, small portions, more vegetables in meals, less carbs per meal, and trying to have more variety and drink less fizzy drinks but more water. All of these changes are do-able, and I am calorie counting too, to try to hold myself accountable for all the cheeky little snacks.

So, that’s my plan. Fingers crossed when I stand ready for my summer holiday, this year I will know, I HAVE lost weight.

H x

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Cheeky Little Update…


So I have nothing that special to say (probably NOT the best way to start  a post, but hey ho! Honesty is the best policy and all that 😉 )  but feel like its been a while, so thought I would just check in and fill y’all in with the nothingness that is going on at the moment 😉

 

I have had a LOOOOVELY Christmas and New Years period, not in half because my boyfriend has had some time off and it was nice to be able to see him for more than just a weekend, although unfortunately not that much longer 😦

I went to Winter Wonderland twice – once with the family which was super sweet, and once with my boyfriend which was lovely too 🙂 Also we went to see the new star wars in the Electric Theatre at Notting Hill – which I CAN’T RECOMMEND ENOUGH. So much fun! We actually got the tickets from our friends who couldn’t go, and they had very exciting-ly bought some of the seats at the back, a nice comfy sofa with tables, blankets and the like – and we enjoyed the film in 3D with the company of a HUGE chocolate brownie and some drinks, so nice! I have seen a lot of family and friends over the last few days, one of my best friends is visiting from Australia, so that’s exciting and been nice seeing him when I can; although Masters work is really starting to get in the way! (how annoying!)

I am genuinely feeling the “job stress”,  I would LOVE to work in a museum environment, or a heritage environment like English Heritage; and specifically in the education department, but right now that just seems impossible, which is pretty depressing. And the only jobs that exist are on what appear to be the tiniest every salary- not enough for me to move out and do the things I want to be doing, so that’s quite tough. I am trying to apply for them still, and also start for some grad schemes – it stresses me out that after the end of this masters in just a few short months now I have nothing to go onto, and that terrifies me. I feel like I am being left behind. I also broached the idea of moving in together with my boyfriend, which didn’t go down that well. Not gonna lie, that hurt pretty bad -rejection isn’t something that’s fun to feel; and although I get his reasoning, doesn’t make it much easier! And the fact I have 0 job and 0 money to look forward to means I feel even further away from him, and the life he is moving towards. Not that he has done anything to exclude me from it, its just so far from where I am / could be, and that scares me! BLEUGH – no point in moaning, I guess it will happen or it wont!

Crohns has been fine -back on the humira injections and Azathiaprine. One thing that has been a pain is I got a cut by my ear, like where the ear lobe joins your head (if that makes sense?!) and I must have had it for over a month now and it just WILL NOT heal. I guess due to my new potato-like immune system, but its so sore and just getting worse, which is pretty annoying!

 

Hmm ,for a post where I had nothing to say I managed to moan / ramble  quite a lot!

Hope you are all well and enjoying your New years,

H x

Back to my natural stalking ground…the hospital


Hi all, hope you are well! 

I have no drama to fill you in on, no big change; just my daily life – me living my life with crohns. (My phone just autocorrected that to “loving” my life with crohns – the irony!) .

 I am currently still working in London (on my morning train ride now) and the job is getting better in terms of I get along a little more with the people, and I understand the work and am busy, so the day goes faster.  Just still feel like there are so many big decisions I have to make abojt my future in the next month or so, and that is so scary! :/ do I take on my masters if I get offered the place? Do I stay working instead? Do I move out and if so who with? How do I manage my weekend time so I can see my boyfriend but also my family? So much is changing all at the same time that it is tricky to understand it all at once! 
Anyway back to the doctors tomorrow morning, have to leave at 6am to get there in time! Luckily my boss said I can work from home tomorrow afterwards, just got to figure out how I’m getting back! I am nervous about what he is going to say, or what tests he is going to ask me to do – I haven’t been monitored once while being on hunira and am obviously oberdue, am just nervous as to what it may be! 

I think the biggest issue I am facing at the moment is the fatigue. The heavy limbs. The exhaustion. And the fact everyone thinks I am just tired and a good nights sleep will make it better; I am sick of explaining its not the same kind of tiredness, so now I nod along and smile and get to bed early. I just wish it was that easy.  
H xx

Thank you, I needed this one


Hi all,

A bit more of a positive post today, albeit a random one.
As you may remember I had 4 days off work last week due to having a throat infection, and being on humira and trying to sort out hospital appointments and blood tests etc. Nothing funn! Anyway, back at work now and I had to have a meeting with my manager yesterday, which I was clearly very nervous about – having spent 50% of my employment on leave for graduation or sick…and I was half expecting them to say that if it happened again (or there were too many doctors appointments) they would just have to give in, because im only on a 6 month contract, they don’t know me that well yet, and you know…its a big hassle for them to cover and deal with someone who is unpredictably so ill. But , my manager was so fantastic. He took me into a meeting room and basically asked me what had happened last week, and asked me what was crohns, and humira, and how long am I on it, and what are the symptoms, and how does it affect me, and what do I think for the future, and …so many questions. But I am happy to talk about it, I am happy to be open and honest about it – saying how it hasn’t affected me like that for so long, saying how this is a side effect of the drug not my disease.

I understand I put / am putting him in a tricky situation, and so he deserves my honesty and to answer any questions he has as honestly and truthfully as I can. I explained everything, I said how I would need a few hours every now and again for bloods or doctors meetings, and that to be honest that illness could happen again where I would need a few days off. And then I sat. And waited.  Then he spoke. He said that they understand it must be a difficult time for me too (and that is important to me to, its not just about work, its nice to be acknowledged as a person) he said that he would try and support me as much as possible. I really appreciate him trying to understand it, which made me feel he was taking it seriously. They said it will only become a real issue for work if that began happening really regurlarly, or if I wasn’t doing my best to manage my condition – for example if the doctor said alcohol makes it worse and I was binge drinking every week…but that makes total sense to me. He said if something else like that happened there is the chance I could work from home for a few days to sort it out, he asked that I keep him in the loop with the doctors in terms of updating him and making sure he understands the situation as it is. It really meant a lot to me that they were going to do their best to support me, as much as they can, YAY

Now I know this post is already super long and boring, but there are two more small things I wanted to write about.

1) I am getting fat. How depressing. I think that it could be linked to the medicine, but that could be an excuse. I need to eat less, go on a diet. and I AM trying, but I am constantly hungry! I don’t feel like I am getting all the nutrients I need – I just don’t feel full or satisfied.  Anyone else?!

2) I know this blog can feel a little boring, long blocks of text and limited pictures and never any of me. Well, there is a reason for that – I am not just lazy!  for a reason I don’t want to be definitively linked to this blog, which is why it is anonomous. I don’t want to be judged on what I write, or feel like I have to edit what I say. I don’t want people to know about my inner thoughts and struggles before they know me. I want this to be private, until I choose to share it. So, apologies if it is a little bland or “impersonal” compared to other selfie-filled blogs. But please, stick with me. It doesn’t make it any less raw or truthful, not to me anyway. Hope you understand

H x

Time flies…when your trying to avoid humira doses


so just a brief one to say hi, and that I’m lying in bed super nervous about this afternoon when I have my next (second) humira dose. 

I know I have done it before, and that its half the number of injections as the last time…but in still pretty scared. I remember it hurting so so much and the best thing about it is that it’s over quickly- but now I’m over thinking it and am super worried! My boyfriend and housemate will be around for about 1 when it’s happening, thankfully, all the moral support I can get is appreciated! I had such nasty dreams about it last night and goif wrong and all this crap, that I just need today to be over so I can move on with the next few weeks of happy times! Just recently I finished university for ever and so am enjoying the freedom before grad ball on mon (yay) and then just a few days before going away with my boyfriend and his family- can’t wait!! 

Gaaaaaah. Sometimes I feel like I spend my whole life either in pain, at the doctors, waiting for the doctors, or scared of something the doctors want me to do. Here’s hoping this afternoon is as quick and painless as possible! 
H xx

Just one more whine…


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.
H xx

Hello Humira…and a whole lot of fear :S


Hi all,

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

H xx