Wake me up, When September ends.

Septemeber has been and gone.

I have been at uni for about 2-3 weeks; I have had lectures for the past week and Fresher's month for the past 2 weeks.

The Uni has sorted it out so that I have an 'assistant'; she helps me by writing notes in class, carrying my bags/equipment and helping me with some organisation. They have also arranged for me to have a mentor - not entirely sure what she does as I haven't met her yet but I will be meeting her tomorrow.

For classes/lectures/workshops I am usually in my electric wheelchair (unless I feel well enough to walk around - but that's usually only in the workshops), I have had trouble making friends... I think it's the wheelchair that's putting them off. I would have hoped it wasn't but I can't think of what else it could be, but it's still early days so I'm hoping it'll change.

I've met my carer's... originally the company we went with said that I'd have one permanent person and one who would do it if the other one couldn't make but now I have 3 but my favourite one is leaving as she needs more hours than this company can provide and I'm getting a new one (who doesn't seem at all interested) but apparently she's leaving soon too.

For now though I like having all these people helping me; not because they are helping (although that is nice - my carer's do my washing up :P), it's because they have become my friends... My assistant was the only person talking to me during class hours for the first week so at least I wasn't stuck on my own. My carer's listen to me, care about my things (they aren't happy that I'm not making friends in my class) and the other day I was having a bad day, in pain all day and then a couple people I thought I was getting on with kind of flaked on me and all of that kind made me burst out in tears, my carer listened to me and then gave me a hug and made me smile.

I have been loving the SU events!! Loads of fancy dress parties and I do love my fancy dress!! Plus pub style events every Wednesday :) oh and tomorrow we have an X-rated hypnotist coming, I think that will be hysterical!

Last night at Emergency 999 Fancy dress night (for which my outfit was amazing!! I used make-up to give my self a black eye, cut lip, a slash on my face with stitches, blood dripping from my ears, I put a bandage round my head and my arm in a sling... - I decided I couldn't really dress up as a sexy nurse or cop whilst in a wheelchair - It was the most convincing outfit there [not sure if that's because I was in the chair or if it was just good make-up] in fact it was so convincing that people kept coming up to me and asking if I was alright and if I had been in an accident :D) I wasn't feeling very well, I scolded myself in the shower and I stood up for too long... I fell onto a chair and I felt as if I was going to faint any second so I left early.

I'm hopefully going to start a photography club for my uni so we'll see how that goes.

So, I'm hoping people will realise that I am more than just my chair - and more than just my illnesses - but only time will tell.

I'll keep you updated :)

*huggle* for everyone!!

A beautiful 'poem' about Chronic Illnesses

Loving Someone With a Chronic Illness By Anon

To love someone with a chronic illness is to be a doctor.

It means helping them to remember their medications. It means driving for an hour to the only 24 hour pharmacy when your local CVS does not have the medication they need.  It means helping them to know when their normal symptoms turn into something serious that requires more attention. It means driving them to the emergency room in the middle of the night, holding their hand in countless waiting rooms, talking with their doctors, and knowing their diseases almost as well as they do.

To love someone with a chronic illness is to be patient.

It means knowing that some days they won’t feel good and there will be no visible reason. It means canceling long term plans when suddenly they don’t feel well enough to go on a trip. It means waiting to go to bed while they do their night-time medication routine.  It means knowing that preparing to leave the house, for any reason, can be a time-consuming ordeal.

To love someone with a chronic illness is to be a counselor.

It means consoling them when they’re tired and feel like they can’t do it anymore. It means listening while they try to figure out their new diagnosis and medications, and not passing judgment if they make mistakes. Or, during those tough times, listening to their burial wishes – just in case. 

To love someone with a chronic illness is to be a guardian.

It means standing up for them when strangers accuse them of being a drug addict. It means discreetly asking their friends to keep an eye on them when they are testing new medications and don’t know the reactions to their body yet. It means defending them when doctors dismiss new symptoms. It means making explanations to family and friends when you have to cancel plans at the last minute.

To love someone with a chronic illness is to not be superficial.

It means seeing their bruises as beauty marks. It means seeing their scars as evidence of strength and survival. It means kissing their dry lips when they are hooked to IVs. It means learning to look past the mobility aids and medical equipment and being attracted to the person behind it all.

To love someone with a chronic illness is to be smart.

It means investigating new medications, even though they never asked you to. It means listening to them explain their research findings in terms that aren’t “normal” language. It means knowing how to make them smile when they desperately wants to scream. 

To love someone with a chronic illness is to be selfless.

 It means going to a restaurant based off a menu that fits their dietary needs, and planning dates around their limitations.  It means going without when money is tight so that you can buy their medication instead. It means learning how much more difficult normal daily activities are for them, and scheduling your time around their time.

To love someone with a chronic illness is to be brave.

It means keeping your chin up while they talk about those scary, painful moments. It means keeping a positive attitude even though all of the websites tell you that their life expectancy will be far too short.

To love someone with a chronic illness is not easy.

It means putting their medical needs before any other finances. It means worrying every moment whether or not they are okay, especially when you aren’t with them. It means trusting their life in the hands of so many doctors who do not know them, or love them, like you do.

Thank you for loving someone with a chronic illness.