Tuesday, March 16, 2010

DSA - every CFS/ME student NEEDS this!

I just wish I'd applied for it at the very beginning instead of thinking it would be as torturous and stressful a process as DLA. It isn't, not by a long shot!

It was actually a rather swift and painless process thanks to my needs assessor, he was lovely!

I've had my provisional needs assessment sent off to be approved by the LEA so fingers crossed that will happen before my course ends (since I'm still waiting for them to stop asking for information to assess my maintenance grant this could be a while)

..Assuming all goes well and it gets the big green tick though i'll be the happy possessor of an ergonomic chair and footstool and some software called mindview that I'm convinced will make my revision process a lot more constructive than it usually is!

With 5 exams to revise for this is of the highest priority! I'm actually seriously considering downloading the free trial to try and make a start on all of that now - I've only got just over a month before the exams themselves so time is of the essence!

Sunday, March 14, 2010

Why people with ME/CFS should never become famous

I've had an interesting few weeks. Someone up there either REALLY loves me or is just 'avin a laugh at my expense.

I won an award to help pay off some of my ridiculously large student loan and the person handing over the ceremonial cheque was non other that the princess of pop herself; Kylie Minogue.



The whole thing started when I got an email through from a site I'd signed up to telling me that I needed to contact Kev on this mobile number asap as he had some good news for me. I had a sneaking suspicion I'd won something as i'd been getting emails through saying the competition deadline was approaching.

The thing is - it all seemed unreal, I'd thought the whole thing was a bit of an advertising scam 'sign up to this site and be entered into a draw for x prize' I've seen loads of 'em and never known a single person who has actually won anything so when I was told i was a £2k winner i was incredibly paranoid sceptical.

We thought perhaps it was a practical joke or a scam, we could find no mention anywhere other than on their site that Kylie was in fact affiliated with them in any way, there was little information to be found online about the charity that wasn't self-generated so 'just in case' we organised a house sitter while we journeyed down to the offices for the event.

We needn't have bothered - as you can see from the picture it was all on the up and up, the people were lovely, the village was idyllic and the 2 days were a bit of a blur.

The only problem was the me/cfs rearing its ugly little head to mar my enjoyment of the whole thing.

As any of you who've been reading here for a while know; I no longer function well in crowds - small groups of 3-5 are my absolute limit after that it gets to be a little too much for me to handle and I retreat into myself or go and find somewhere to hide and regroup.

This meant i missed out on loads over the 2 days. During the 1st evening everyone went to the pub, firstly there wasn't much seating so after a tiring day of chatting and travelling I was having to stand around and talk to strangers - an ordeal in itself.

Then I didn't get much sleep because in the night, on top of the headache I'd been fighting off all afternoon, I developed a really sore throat and couldn't breathe. we were then up early the next morning to check out of the B&B and head back to the offices for more run-throughs of the event to come.

We got to the office and it was bedlam, I elected to help out in the office rather than with the others in the reception room; 1. because I got a chair and some net time and 2. because I just wasn't feeling up to dealing with more than one person at a time.

Eventually everything started to calm down but then more competition winners started to arrive, these guys hadn't won any cash prizes but they were dying to meet Kylie, I just stuck my head down and made a bracelet with my ever present bead kit - twisting wire helps me calm down and gives me something obvious that forestalls a lot of conversation when I'm feeling mentally fatigued.

..I know I probably came across as rude or anti-social but I just really had trouble coping with all those people - a bloody joke when you consider the 6 years I spent as a bouncer but there you go, one of the delightful side effects of CFS, for me at least.

That was the last chance I had to sit down until Kylie left.

The lady of the moment arrived and the photographers went nuts jostling for position and us students crammed into the space behind them like sardines.. Not ideal for someone who doesn't like crowds, but thankfully I was the 2nd person called onto the stage so it wasn't for long.

However being on that stage felt like an eternity - as the bulbs were flashing and the guys were shouting 'top left, top left, can you look right please, now down, down, over here please Kylie' I said out of the corner of my mouth "I have no idea how you put up with this"

I really felt intimidated and under siege, it was a struggle to keep the smile on my face and look suitably thankful/ grateful to be there, how celebrity and public figures stand such an invasion so much is beyond me - the few minutes I was part of that focus was enough to deter me for life.

The picture shows Kylies response to my comment, she just looked down (yes down. In heels she's taller than me, just to add insult to injury she's also slimmer and more gorgeous *sigh*) and gave me a hug and told me not to worry it'll be over soon. She then looked back up and gave her professional smile for a couple more minutes then said 'that's enough guys' and led me to the podium to give my speech.

Yes, it was torture. I suck at public speaking - my strength lies in the written word, I'm let down greatly when it comes to speaking those words aloud. ..but I stumbled through it then fled the stage in relief.

I had to get back up there for group photos but once Kylie left I grabbed some food and tried to hide in a corner again - but reporters kept grabbing me for interviews; why, I don't know because not one of them used anything I said. But it went nice and quiet as the band started setting up and every photographer scrambled to get set up with laptops and net access in order to upload their shots.

I went and stood against one of the pillars in the corridor, thankful for the cool breeze and the lack of people trying to talk to me, I felt completely wrung out. It was just at that moment that the stinky curly haired ogre shambled past and told me 'you were rubbish by the way' as he walked through the door.

I was pretty much gob smacked to be honest, that came literally out of nowhere; I'd not spoken to the guy and beyond a little joking earlier with some of the other folks about journalists in general had said nothing that could possibly have upset him.

I told Stef about it and then put it out of my mind, all I wanted to do was lie down somewhere - I was really at the end of my limits, finally Kylie left the building and I could head into the reception room and sit down.

..Which is when I burst into tears. Stef then told Sara and Kev about the rude oik and they obviously assumed he was the cause of my upset and started getting all irate about it, which made me even more embarrassed and agitated so they left me to calm down.

After a while they asked if the associated press lass could just ask me a few questions, I answered them (apparently in too much depth according to Stef, but then I always do - I'm not a natural soundbite lass) and finally the day seemed over.

I would have loved to have stayed and enjoyed the after party, but the need to pick up Isabella from his mums combined with my oncoming crash meant that would never have been possible.

I met some lovely people and the studyvox foundation deserve kudos and all the help they can get to realise their dream; sadly I don't have the energy to help much, I have battles of my own to fight and their passion is incredibly tiring because it ignites a passion of your own when you are around them - I can't afford that kind of passion these days, it wipes me out for the best part of a week with the after effects felt for several days more.

I can only really concentrate on one thing at a time outside of my family and currently that one thing is my course.

Which is a shame because they are exactly the kind of people I would love to work for; intelligent, caring, passionate and fun loving folks.

Maybe one day i'll have the energy to share in something so full of possibility but for now it's just head down and slog my way through the year and pray I get enough credits to make the extra year worth it.