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

What if money was no object?


http://airows.com/lifestyle/what-if-money-was-no-object

I think you can tell form my last few posts that I am really struggling with my decision making…and this morning my boyfriend sent me this link and it made me smile. I know what I want to do, I just don’t quite know how to get there. But I think that’s okay for now, as long as I can push myself to keep trying!  There are so many different things / jobs / roles I would want to do in my life, and if I experience just a few of them, then I should be counting myself as lucky 🙂

Hope you enjoy the video!

H x

I need a whole new cutlery set of spoons..


…in reference to the spoon theory and chronic diseases.
Just called in to tell work I won’t be in yet again tomorrow and they want a meeting on Monday to discuss my illness. Understandably. But how do I tell them it all? How do I make them understand? Aside from fatigue and some odd cramping it isn’t crohns causing me issues now, it’s humira. I doubt myself. Maybe I’m just lazy. Maybe I’m just avoiding responsibility. Maybe I’m stupid. I just know I feel so exhausted today I can barely keep my eyes open, and all I did today was sit in the doctors for a few hours. How can I do this full time job and commute? If I give up am I just failing and using crohns as an excuse? Or is it valid and  not givin myself enough credit? Am I letting it stop me? Or am I being realistic in what I can achieve? 

I doubt myself now. With these invisible symptoms and invisible illnesses. If I can’t even believe myself, then why the fuck should anyone else. 

Someone, help me?! Decide for me?! Lend me the energy of a normal 21 year old, just for a day so I can remember what it’s like. Please.

H x

decisions are not my friend…


Hi again,

I know I only posted a pretty miserable post yesterday, and I am sure the last thing you want to hear about is all the same crap again…but here it is. sorry. (promise to try to be a little more upbeat next time!)

So a review of my current situation:

I am at home, in my PJS having been off sick from work for the second day in a row. After having only been in for 8 days. By Friday I will have been out of offie for 50% of the time they have employed me. So I am not sure how much longer that will go on….

I am stressed about work. about them understanding that I am not faking this illness, about them not firing me. But then I don’t LOVE the job. I took it in haste to earn money, but now I think it may be a mistake, that maybe I should have held out longer for a job I actually really enjoyed. Should I quit? should I do a masters? Or a PGCE? I know where I want to be, but at the moment I cant quite get there. I want to move to London because my boyfriend is heading there. But should I live outside of London with a friend (but it will be expensive and still a commute, and in a small and quiet town) or should I just randomly flat share with strangers to get closer to London…but that means I have to keep the job because I need a definite way of paying rent.

I have tried to volunteer in so many museums, but to no avail. so how can I move out if I cant even secure a volunteering space?

I want my blood test results back. I am worried about being ill. I am angry that my hospital hasn’t monitored me, so I cannot be sure that it isn’t something more serious.

I am stressed about what job decision to make.

I am scared of getting left behind in my friends lives

I am scared of being ill again, and im paranoid that just a sore throat has knocked me off work for two days with emergency blood tests and panics. How does anyone live a ormal life like this ?

So many decisions. so many big questions, and all need answers relatively quick. and I have none of them. Someone, help me?

#disheartened

H x

I’m really struggling. Its, unfair.


I cant remember when I last posted, or what it was about – and so I apologise for any long gaps/ random jumps between posts.

This weekend my boyfriend got back from his 3 week trip around America, and it was soo lovely to see him and spend the weekend with him. I took Thursday and Friday off from work (did I mention I got a new job?!) and it was also his birthday on Thursday, and had the nicest time! We stayed the rest of the weekend at his house, and was so nice to see his family again too. Then on Monday another day off work for my graduation, which was quite stressful! But, ultimately, fun 🙂 and a proud moment indeed!  I was really nervous so couldn’t eat my lunch before (although managed to fore down a few bits of garlic bread 😉 ) but my throat was feeling sore, but put it down to nerves!

Anyway I woke up again today, ready for work. And felt so ill. A sore throat, hurting to swallow, a headache, a really “full” head (no other way to describe it) and being all clammy after having the sweats all night. I called NHS 111 and they advised not going to work and heading to the doctors ASAP, which is what I did.  He said my tonsils did have a coating, and were definitely not healthy even if they weren’t super inflamed and that he was concerned about my other symptoms. He took me through for an immediate emergency blood test, and should get the results back for Friday. I hope that they come back clear, but at the same time if they don’t then maybe they can fix the issues im feeling – the intense fatigue, the headaches etc.

On a side note, I was so angry with the hospital the other day. After doing another humira injection on sunday, I was concerned that after 3 months I haven’t heard anything from them, so I called them en route to my graduation. They said that it was my fault for missing several appointments – despite the fact they continually send the letters to my old university address, even though I have told them that I have moved back home twice! Anyway, it means I have had no blood tests or follow ups, and it means that Im not sure if I have any internal symptoms from the medication that I may not even know about.

I have a new job, a new job which I already have taken holiday from and am now taking sick days for an unknown amount of time. A job I’m not sure is my forever job. Decisions to make. Stresses to cope with.

It all feels a bit  much right now.

H x

Happiness isn’t always easy. But it’s worth trying for. 


   
T
These make me smile, and that’s what’s important. They force me to remember that when things get bad. I need to try and make them better rather than wallow. So, here is a list for me to look back on of just some of the things that are good in my life, that should make me smile
1. I am healthy (sort of!) I may not be at full health but I am healthy enough to live my daily life, and strong enough to function on my own. 

2. All my friends and family are healthy. Thank god. Worse than being ill yourself is watching those you love suffering. 

3. I have plenty of friends and family. They love me and support me. They pick me up when I am down.

4. I have the bestest boyfriend in the entire world. I need to focus on the fact that maybe he isn’t here today, or tomorrow, Ir for the next two weeks. But he will be back, and he will be happier for being away on his amazing holiday.

5. I have a job. An amazing job (I hope) that I can use to help achieve my dreams, to help me move out, to help me earn some of my own money.

6. I have a place to live. A family to live with , and friends to be happy with. 

7. I have plenty of future I can look forward to

I am sure there are many more things, but right now I can’t think of any. That makes me sad, ironically. There are so so many more than 7 things in my life that make me happy. So many. But I can’t think of them right now. Maybe I can add things to that list later. 

I hope you all have a longer list then me. 

H xx