What a Rubbish Couple of Days...

I don't know if it's the heat or what, but at the moment living is hard. Work is virtually impossible thanks to fatigue and I feel incredibly frustrated about almost everything. I've been asked by my psychotherapist to write down my feelings, to try and reconnect with them again, but how am I supposed to write what I feel if I only feel negative things most of the time? Isn't that what depression is?

For example, I can only resign from work at the moment, seeing as Occupational Health feel I can work "at some point in time" but not at the moment (which surely is the one that counts, right?) Well, situations have changed and my rehab will take longer than I anticipated (seeing as it's a life course, rather than a cure) so as you can imagine, I had a bit of a shock on tuesday!

Work is getting too much for me at the moment with everything that's going on, I just can't focus on it and I'm making mistakes. It's not the work at all, it's my highly unstable mental attitude to things. I'm so quick to jump to the negative and let it twist and control my thoughts and let them slide to dark places, even while I'm taking all these pills. It's unbearable some days, even Myriam noticed it when I was with her, my mood darkens from a mere glance or gust of wind.

When I'm happy though, I feel as though I'm bouncing off the walls, and that in itself is unbearable too. I'm more likely (ironically) to cause myself harm when I'm happy, because I will always do too much and cause myself some form of injury or problems. I know I shouldn't be working, I knew it when I was diagnosed with depression on top of everything else. But what can I do? I can't resign, because I'll lose all the help and support I have now as well as any benefits I can claim when I'm out of work.

I need to take some time off to clear my head, again, because I can't cope with this situation and I am in too much pain to get up and work every day (I managed to pop a rib out earlier...). But I have no annual leave left, so it'll have to be time off sick, with no pay. I feel like I'm finished, at 24, that this is the end of my working life, I just need to find the "good ending". It's a bit like Chrono Trigger, sure you can fight Lavos at level 1, on your own, but you will die. Maybe I need to do my side quests to get my ultimate armour and weapon... Who knows?

Feeling Adventurous!

I'll start with the events of Friday afternoon. It seems that a visit to RNOH Stanmore wasn't enough. I had a message on the landline that my new medical insoles were ready to collect. After having a 6 hour trip to a hospital just outside London, I didn't really like the idea of going yet another hospital, even of this one was a bit closer...

The other hospital, St Michael's, has been newly refurbished. But I've not had to go in that part (yet), I always have to go in the "Day Hospital" section. It's where I used to go for physiotherapy, but every time I've gone they've been no help at all. The orthotics team are always really nice though.

After the orthotics fitting (which are very uncomfortable), we went to Lidl next-door and traded over some buttons and pocket lint for various items of food and a drink for me (as I was dying from the heat. I could feel my mouth turning to sand, it was horrible.) So, overall, Friday was very hectic and it wiped me out.

Saturday wasn't anything interesting, I was dropped off in town by dad to meet up with Harry as usual. I bought loads of drinks and made Harry carry everything (as usual, sorry Haz!) and he kindly bought me lunch. I was feeling a bit adventurous, so in Subway I ordered double tuna (!) on wheat. the look on the Sandwich Artist's face was priceless, I guess no one orders double tuna...

We got a lift back from town and played about with the iPad for a while, playing various games (read: Canabalt) and we watched Ponyo. No matter how many times I see Ponyo, it's still a weird film. But it's a good film (as Ghibli films usually are). Harry left after that to head to DND, I don't know where he gets the energy, but I want some...

I was given a laptop to repair, there wasn't much wrong with it (software issues) I cleared them up, added some antivirus software and advert blocking software for firefox and sorted the wireless stuff out. I don't mind doing it when it's quick stuff like that, as I can just about cope and my fingers don't really need to be used that much (thank god)

Dinner, we ordered from our local Chinese takeaway, I had Cantonese sweet and sour pork with special fried chow mien. It was lovely, but went right through me as usual. Other than that, the evening was spent watching episodes of The IT Crowd, which is fantastic.

I'm laying in bed now and it's 1:50am. I'm feeling pretty miserable for some reason, but that's no change really. I'm pretty tired and want to sleep, yet at the same time I don't... It's been like that for the last couple of weeks now, this weird insomnia. I don't like it at all...

They Tried to Make Me Go to Rehab...

...and I said "oh, ok then!"

Well, today's visit to RNOH Stanmore was interesting. I'm currently writing this on the way home (I'm on the M11), being shaken to bits with my iPad propped up against the dashboard of the car. The journey down wasn't as bad as I was expecting, but still pretty horrendous with the awful road surfaces. Being bounced around inside a car isn't fun!

The appointment itself was a pre-pre-consultation for a possible stay at the RNOH Stanmore rehab centre. I met a very nice doctor who went through all the ins and outs of Marfan Syndrome and did a few tests. He said that the rehab program would help me be able to manage my life better and to a more "normal" state. Which will be fantastic.

Basically, I'll spend 3 weeks in a large villa with a pool and personal trainers. Or as the doctor put it, I'll be staying in an older part of the hospital and will go through hydrotherapy and physiotherapy courses to help my proprioception and manage my dysautonomia. The environment will also help my mental state too, from the sound of it. When describing my mental state, the doctor ask if I was bipolar...

I don't think I'm bad enough (moodswing wise) to be bipolar, I just have very down "down periods" so my "mania" feels like that to me, because I'm hardly ever happy! He talked more about Marfans than he did Elhers Danlos, which has put me a little on edge, but I'll be ok. My blood pressure was a little low, pulse 97bpm, and I've lost about 3kg! Hopefully I can keep up the weight loss, I'll start taking my tablets again I think!

While in with the doctor, Dad was playing Flick Fishing HD on my iPad and getting a lot of attention about it apparently! The battery is currently sitting at 51%, which is amazing considering it's been used constantly for over 6 hours now. It's been surfing the Internet, playing games, typed on all while playing music and it's still pulling this kind of battery life. Amazing.

I haven't eaten since yesterday afternoon, so I'm incredibly hungry. I think it calls for a nice tomato-y pasta lunch or something! Dad's just flicked the AC on, at last. I love air conditioning, mmm, cold air!

Well, nearly home now, we're on the A120 as far as I know, just passing a broken down coach. There seems to be a lot of broken down cars and things lately, it must be the heat!

New Hospitals...

So, tomorrow I'm off to the Royal Orthopaedic Hospital Stanmore (ROHS). I'm not entirely sure what I'm going there for, but I've got to be there for 10am tomorrow morning. I don't like going to hospitals anyway, especially ones that are really far away, because I don't like travelling unless I really have to.

This week at work was really difficult to get through, as I haven't had much sleep since Saturday. It's not the actual work that's difficult, it's the sheer amount of it and the frustration I feel when I can't get it done. I don't like asking for help, least of all for work I've been given to do on my own.

Tomorrow, I'll be getting up early and spending most of my day on Twitter to try and cure my boredom, frustration and anxiety over going to yet another hospital. I don't know what I'll be doing there, but I imagine torture devices like racks and iron maidens to stretch me out and puncture holes in me! But who knows.

I'll have my phone and my iPad on hand to pass the time, the phone being used to give the iPad access to the Internet. Luckily I have a load of iPad games to pass the time, I expect tomorrow to be rather long...

I've just realised that somehow this post has taken nearly 3 hours to write. It's too hot again and the heat makes me feel ill rather quickly, I can't stand it. For some reason the heat was more bearable in America, it was different and less oppressive. I miss the cool breeze and the lovely days and swimming whenever I want, I wish I could have it here.

Well, bed for me, I actually need to sleep tonight to wake up early. So, goodnight!

1:45am Musings, or Why I Love My iPad

Ah, insomnia, it's been a while. I loath you, because you make everything worse. Fatigue, stress, pain, aches, clumsiness, everything. You even take away what little ability I have to concentrate... However, you make me realise how useful my iPad is. Like this blog post, I'm writing it while curled up on my bed as I'm much too warm. My window is opened wide, but there's no breeze tonight, so no cool air...

I haven't slept properly now since saturday and I'm starting to feel the effects. Everything hurts at the moment, skin, eyelashes, etc and I have minus levels of energy. It's horrible. Yesterday was an absolute nightmare, I had counselling first thing then work straight after. I can remember nothing about the day except for the vending machine in the hospital giving mum grief.

And today, all I can remember is the seemingly endless amount of work I had, which in the end I had help for (and will have to get the rest done tomorrow/today) which hopefully I'll have had some sleep by then. I'm starting to feel stressed too, not about work, but about hospital on Friday. A new hospital, another doctor telling me I need to loose weight, of course it's stressful. I hate hospitals, and I'm in them a lot...

Other than work, I don't know where today went. It's all a blur at the moment, which is not a good thing at all. I'm in one of those moments where I can't stand myself or being me. I want to be something, anything else, just so I can have a break... I managed to show all my holiday photos to a lady at work who had asked to see them too, and again, I wish I'd taken more...

But that brings me on to my iPad. I have never had a device or anything like this. It's something that allows me to communicate so effectively, and enables me to do things I'd otherwise struggle with. Sure it's not for everyone, but for me it's perfect. If only I could bung my t-mobile simcard in it, pair a Bluetooth headset and use it as a phone, then I wouldn't need anything else (well, maybe a jacket with bigger pockets!). Well, and my wallet, but technology wise I'd only need this.

Ah well, I'm feeling a bit miserable at the moment, away from Myriam, not feeling well, not liking the idea of a new hospital... Everything is very down at the moment and it's not good for me. Right, I'll try and get some sleep now and we'll see how Wednesday goes...

Today is Pyjama Day!

Well, it would've been had I not slept through most of it.

Today went like this, I woke up pretty late (around 1 this afternoon) feeling terrible and decided to grab some food. I made some noodles (bacon supernoodles!) I happily ate them and was told that Brother's friend would be over soon (soon meaning right at that moment) so begrudgingly I went back upstairs. I was feeling well enough to entertain a guest, plus I wanted a relaxed day. Basically, Pyjama Day was thwarted before it had begun...

I was upstairs for 5 minutes and IBS kicks in, I can tell it's not going to be a good day, generally if it acts up after I've eaten something, that's it for the rest of the day... I won't go into any more detail than that...

After getting some temporary relief from IBS, I go to bed then to sleep. I wake up at around 6:30 and think "hmm, maybe I should have dinner" I contemplate texting mum and asking her to bring something up for me, but I decided against it. I ventured down to see what was happening (and to see if Brother's friend was still about) and asked for some dinner.

Served myself some paella that mum had made earlier, heated it in the microwave and proceeded to go and eat it. It was pretty good, I finished and mum offered to take my tray back to the kitchen for me. Chocolat was on tv, so I hung about and watched it. I grabbed a cola sun lolly from the freezer and ate it while the film was on, getting ready to settle for the evening and watch tv downstairs.

Once the sun lolly was finished I decided on getting another one (they're cold and tasty, what can I say?) so I grabbed one and headed to the kitchen to cut it open. Upon returning to the living room, Brother's friend is there, sitting in my seat :( Rather awkwardly, I have to stand and eat my sun lolly, in my pyjamas, feeling ill in front of Brother's friend. Not happy.

I finished the sun lolly and decided that I should just go back to bed, seeing as the 6th member of the family was looking rather comfortable in my chair. I ran myself a bath (made it too hot and too full as always) I found some lavender and patchouli bath soak stuff and put some of that in (screw top jars/bottles/etc are becoming such a pain for my aching hands...)

I tried to relax, but it was just one of those days, that water was too hot, then too cold, then I ran out of hot water. Plus, the water wasn't taking away my aching, or the pain of the various pulled muscles I have...

I finished my bath and saw that it was about 9:35, I peer out of Brother's bedroom window to see if his friend's car was still there (it was) so I mooch back to my bedroom again and decide to write a blog post about my rather unfulfilling day. IBS kicked in, yet again, and so all of this was written on the go, on the iPad. I don't know if Brother's friend is still here or not, but I'm going to bed.

I hate days where I am a pile of pain and fail, especially when my skin aches and my stomach doesn't want to accept food. I feel like a skin sack full of bones and dying organs, not like a person at all... I also hate it when I'm not allowed to live (read: mooch about) in my own home, on a Sunday...

Weekend, England and Vuvuzelas

Well, there's the week gone, at last! Work wasn't too bad today, lots of work as usual, but I got most of it done. Spent most of the day half asleep and fighting to stay awake, until my shoulder/collar bone decided to go for a walk. It's really painful as I think I've pulled a muscle and it doesn't want to go back right. It went about 30 minutes before it was time to go home, typical really...

Tonight is going to be a nightmare, seeing as I'm in England and it's England who are playing tonight in the World Cup. I'm indifferent when it comes to football, I can't play it and I couldn't care less when it comes to watching it. It's not my thing at all. However, everyone else in the house and the neighbours will be watching it, and loudly... So it calls for noise cancelling headphones while the match is on and possibly all weekend if they lose!

Now, while on the subject of the World Cup, I must bring something up about these vuvuzela things. First of all, I honestly thought it was a typo of Venezuela or something like that, seeing as there's been a lot of weird stuff trending on Twitter lately (as well as a lot of stuff with spelling mistakes in it). Then as people started talking about them more I had no idea what they were (hence the jokes about it sounding like a woman's private parts) but it turns out that a vuvuzela is some sort of horn that makes an awful racket.

From what I've seen of the World Cup so far, I don't know how people can stand to watch it with that noise going on, it sounds like a huge swarm of bees attacking a chalkboard! It's a horrible noise, and I hear they're now selling them over here in their thousands... Not good.

This evening I want to get my letter finished and packed up ready to post, but it all depends on how I'm feeling and if I want to sleep early... I hate days like this, where I have no energy and I ache, as it means there's no time for me to do what I want :(

Thursdays...

Anyone who knows me will tell you that I hate Thursdays. If anything bad was going to happen, it'd happen on a Thursday and this week is no exception to the rule. It started by not having anything to drink, all day! Mum forgot to pack me a drink this morning, but that doesn't happen often! Then the vending machine decided it didn't take £1 coins... Other than that, work wasn't all bad...

I had my first training victim volunteer today, and it was quite successful (and will hopefully lessen my workload in the next couple of weeks!) I was quite surprised how easy I found it to train someone, and how good people find my notes. I'm glad! So the day started off well. Then I was given over 200 forms for individual retirements and whatnot. I like to get the day's urgent stuff done at least, but not when there's that much! Luckily I have help, but the panic still wants to set in... Not only that, but my phone decided to overheat in my pocket and sent itself into a reboot loop, meaning I had to take the battery out and leave it on my desk in front of the fan to cool down... Moments that make me wish I'd stuck with an iPhone...

So anyway, having not had a drink for over 5 hours and having to train someone and getting loads of work to do AND my phone messing about, Thursday was getting a bit annoying. I get home to find a letter from the Tribunal Service, information about my disability living allowance claim. Unanimously, they decided that I only need the lowest tier of care, again. How rubbish is that? When I reapply for it next year, I can use all the new information I've gained to hopefully get a bit more. I'll talk to my GP about getting a "blue badge" for parking close to shops and things, because it'd be useful.

Right now, I'm eating Lady Claire hand cooked potato chips, they're nice but still don't quite cover the disappointment that has been today. I dare not touch the PS3 today, as no doubt, something will go wrong... I might pick up where I left Tales of Vesperia on the xbox though (seeing as Dad has about 7 repaired xboxes left and soon to have a new one on preorder, we have spares if I break mine... Or Dad could always fix it!) Also, a game has come out for the iPad that I've been desperately waiting for, but it's come out at ten times the price of the iPhone version (59p for the iPhone one, £5.99 for the iPad version) It's a joke how some companies take advantage...

On a positive note though, Thursday is nearly finished and Friday should be a lot better. Less of the dehydration for a start and hopefully no more bad news from benefit people... I'm going to write my letter tonight, as I have two lovely boxes of chocolates, but I still have no idea what to say. Maybe just a huge "OMG THANKS!! CAN HAS CHOCCIES :3" will do? But I want to put across how grateful I am and how inspired I feel reading his letter.

I can't wait for the weekend... Why can't it always be the weekend?

Tuesday... The Week is Dragging Already...

Man, work today was a struggle. My back gave up on me last night and I didn't get a very good sleep last night either. So today, I get into work 5 minutes late and then have to train someone. I don't mind training people (I've never done it before, plus I'm going to have to train someone before I leave...) but it's difficult when the internet goes down and takes out the whole system at the same time...

Basically, the day dragged on and I thought to myself about what I could be doing rather than sitting in a chair, in an office, looking at a blank computer screen (seeing as there's no work I can do anymore) I think this was the "thinking long and hard" thing that the Occupational Health nurse suggested that I did. My conclusion? Certainty that I want to enjoy my life rather than work. I want to spend the time to get fit and able to live comfortably. Sure money will be tight as I'm not working, but I'll manage somehow.

I got the ring I ordered for Myriam today and it's beautiful. I bought it to replace the one I bought her years ago, as the silver has worn through. This ring has five actual diamonds in it (tiny ones, total weight is like 4pt, so not a lot!) and the "wishbone" design is really quite nice. The metal this time is gold, but Myriam and I both find gold a bit gaudy, so it's white gold (which, ironically is cheaper than "real" gold). I've taken some photos of it, one of which is over to the side there. I hope she likes it (she picked, so I hope it's as nice as she expects!) because I think it's a very beautiful ring!

I also managed to play Red Dead Redemption online last night for the first time! (after many attempts over the last week, that is) and it was fantastic fun. I can't wait for the co-op DLC that's supposed to hit. The game is really growing on me now and after the patch, the bugs seem to be dropping pretty quickly which is awesome! Now I just need the time to play it! It's a shame there isn't a mobile version of the game, like an iPad version, similar to GTA III on the PS2... Although, GTA Vice City would be awesome on the iPad. That was my favourite one after all!

Which reminds me, I haven't started my Thank You letter yet (it's still in the planning stages!) because it needs to be just as awesome as the letter I received and it needs to be more than just a simple "thank you". I hope to start it tomorrow, but we'll see! If it's anything like this blog post, it'll take me hours to write!

Well, that's me for today. I'm already sitting in bed, completely exhausted, I'll probably have a lay down in a bit to sleep off some of this ache.

What a Way to Start the Week

I have a letter to write and a huge thank you to give to Mr Rich Rosado at Rockstar, for not only sending me the most wonderful letter I've ever read, but for the 'small gifts' too. I am touched beyond words and a little bit hyper at the moment, so I'll wait before writing a reply. I never expected anything so amazing when Rockstar said they would send me something for my trouble.

I feel embarrassed to mention the gifts (especially on twitter!) as they are beyond words, but I'll stick a photo up of them. I honestly can't believe it. Certainly made today a lot more enjoyable, and to think, I was going to sleep when I got home!

Edit: Here are the photos :) I've definitely gone back to being a Rockstar fanboy, hehe! Click on the picture to go to the album!