Over a Week!

Wow, it's been over a week since I last blogged, I can't believe it! Looks like a massive update is on the way, or several. I'm going to follow this one with a rant, just as a warning!

I'm still off sick, I'm two weeks in now and it's quite difficult to do things. It's not because I don't want to, it's just that when I plan, something goes wrong. Like at the moment, my knees are playing up. They're very lose and they have no stability to them at all. It's almost frightening to walk at times, not knowing what my knees are going to do! The good news is my back is slowing improving! It still gives me twinges, which I find incredibly frustrating, but it's getting better! Back pain has to be the second worst thing in the world (after side-effects from diet pills, but I'll save the explanation of that!)

Obviously, as I've not updated for a while, not a lot has happened. I went to see my counsellor on Monday, who gave me a long talk on mind and body connectivity. Apparently, my feeling of being trapped/in the wrong body is one that I can overcome mentally by positive thinking and listening to what my body is saying. I can't listen to what it doesn't tell me! He also seems to think that recognising negative thoughts and putting them to one side is a really bad thing. I'm not sure why, but maybe it's because they can bottle up and come at once? I don't know!

I've also been playing lots of Dragon Age: Origins on the PS3. I started a new character, a human noble rogue (irony?) and I've done the tedious parts, Kokari Wilds, Redcliffe, Circle of Magi (god, I can't stand the Fade quests!) and now I have the meatier parts left, which is most of the DLC, character side quests, and the 'better' quests (Denerim, Orzammar, etc) I left Dragon Age today, and I dabbled in a bit of Crackdown 2, which I really didn't enjoy. It's like Infamous, but without the polish, the fun. I didn't feel 'awesome' I was constantly aware not to hurt civilians or peacekeepers, which meant I couldn't just rampage. Tomorrow it's business as usual and back to Dragon Age I think!

I've also borrowed a lot of DVDs off Harry, the entire Avatar: Legend of Aang/The Last Airbender set (all 3 series), just to wash the feeling out of my head that I want to see the M. Night Shyamalan movie. If I see it, I'll only end up disappointed and hating myself. I also refer to it as "the M. Night Shyamalan movie" as it really doesn't deserve to be linked to that great series. Even though the series is a children's cartoon, there's just something about it that's brilliant. It shows struggle and growth in quite an amazing way.

Myriam's 22nd birthday was last Sunday and her dad wasn't impressed that I didn't give her any presents. He seems to find any excuse to belittle me to Myriam and he only does it to upset her. I have got her presents, I've got her some little things and a new ring to replace the one that has cracked (much, much better quality and should last a lot longer) and I told her they'd be late. I know Myriam herself doesn't mind, it's just her dad that annoys me!

Tomorrow evening I'm attempting to go out for the first time in a while. I don't really care for the film I'm going to see (inception), but I want to go out and see some friends. I'll be going with Harry and Nikolas, rather than my usual crowd. This will be an adventure, as I don't think I've been out with Nik on a cinema excursion! Hopefully they'll be mindful of my extra needs (I know Haz will) but I think I worry for nothing. It's scary how much I need to trust who I'm with now, I hate relying on other people.

Well, that's it for this post, it's nearly 3am and I'm watching a repeat of Have I Got News For You on Dave. Now it's time for my rant post!

Quick, Slow, Quick, Quick, Slow!

Well, I was all prepared to go and have my blood test today, however, it turns out that I needed to fast from 10pm the night before. D'oh. I get to the hospital (dad dropped me and mum off) and when sitting with my ticket mum says "did you have to fast for this one?" so we get the form out and have a look. Turns out I did, for the blood sugar tests... So we put the ticket back and head off.

I managed to get a card and another present for Myriam, I got a MASSIVE card which I thought was lovely. It's not too soppy though, so she can display it if she wants to. I love the little gifty thing I got too, I was going to get both a Hello Kitty pop-up card and a Hello Kitty cushion, but I thought I was pushing my luck just a little bit! I'd have liked to have seen Myriam's face though when she saw the HK card!

Unfortunately, Myriam's presents are going to be a little delayed this year, but hopefully she won't mind, at least she'll get them! She's getting lots of Hello Kitty stuff, something for every room in the house, I know she'll love them!

Apart from the trip to the hospital, I phoned work and broke the news about not being there for two months. My boss sounded a bit annoyed about it, but then again, everyone sounds annoyed at 9 o'clock in the morning! It was probably not personal, but having just woken up and not dosed, I felt a little bad about it.

I also called the department of work and pensions about ESA benefits as I'm now on long term sick. If I'd thought about it, I should've got some when I was prescribed with depression and told to take all that time off as it was a huge struggle with no pay! But it comes down to surviving on what I have, as long as I can afford to pay my bills each month I'll be ok. Hopefully this is ESA will give me enough to live on for the time being!

Progression, Not Recession!

Well, further to my post the other day, I went to see a GP. She wasn't my normal GP, but in a way it was better to see her as she was the one who pointed me down this path and got me to be diagnosed. Obviously there was a bit of a gap between when she saw me last and now, so she read my notes and the letters on my file.

Luckily I had written down everything I wanted to discuss with the doctor and I passed it to her at the beginning of the appointment. Straight away she said: "this is far beyond GP level to deal with, I'm really sorry. There's no way I can help you in 10 minutes, even if we had a whole surgery. However, I'll do what I can." She was fantastic, even though she hardly did anything, it went better than I hoped.

My antidepressants have been doubled, I've been given free access to swimming and I've also been signed off work for 2 months. I'll break the news to work tomorrow and get a short letter written to them too, which I'll post with the sickness forms. The doctor didn't even ask me if I felt able to work, she told me I wasn't fit to work at all and signed me off straight away before she looked over the list.

The bad news is, because my fatigue has gotten worse, she wants me to have a full-board blood test to make sure my thyroid is ok. I hate blood tests, needles, anything like that. I always feel worse coming out of having a blood test than I did before having one. So my plan is to get it done ASAP, get it over and done with so it doesn't bother me for days and days. I also have to go to the opticians about my eyes and talk to them about what's happening there. I'm going to wait for that though, as I want to pick up some new glasses when I go!

I feel this sick leave is progressing and helpful and a positive thing. Occupational Health said to me that sick leave was detrimental and I should stay working as long as possible, but what if working is causing me more problems? I don't think that was taken into consideration at all. Funny that a doctor sees it straight away and says "With depression and anxiety alone you shouldn't be working, the fact you can't physically cope with working makes the mental issues worse. You're not at all fit to work!"

I hope the swimming is good, I hope it's short 15/20 minute sessions and not an hour long, or I will struggle. However, the free sessions sound fantastic and I can't wait to jump straight in. I have no idea where it's held, but as far as I know it's not at the public pool. It's a shame Dad won't be able to come with me, because it was really good when we went swimming together.

Well, it looks like a lot more blogging will happen as I'm not at work for a couple of months! Hah, yeah right.

Does Dr Congo Drink Umbongo?

So, it's Monday morning and I'm reduced to starting blog posts with programming code (really nerdy starting sentences with "so" knowing where it came from, ha!) basically, my back is a mess still and I did nothing at all this weekend.

Back pain has to be the single most frustrating thing in the world. It's not a pain that can be ignored as it hinders you in so many ways. Simple things like reaching, twisting, stretching and even sitting are virtually impossible at times. It's extremely limiting and it makes me feel even more trapped inside my body.

I'm going to see my counsellor this morning (which is why I'm up so early), hopefully he'll appreciate my struggle to go and see him this morning! Unfortunately, work is out of the question, as there's no way I can survive 5 hours working, moving about and bending, stretching, reaching, etc. But on the plus side, it gives my mind time off to work on what I want to do.

I've got an extravagant list of topics that I wish to discuss with my GP tomorrow, ranging from the back pain to my eyes and Marfan Syndrome. With my eyes, I've found that my corneas can move about, like contact lenses! That was rather shocking. They can literally come away from my eye and move about, what a thing to find at 3am in the morning, eh?

The GP I'm seeing tomorrow isn't my normal one, however, it's the doctor who started this whole ball rolling with possible hypermobility syndrome (which seems now to be Marfans...). This is good in a way, because she can see what the progression has been and advise me further on what I can do. That's not to say my regular GP is bad, he specialises in other areas, that's all.

Right, time to get ready for counselling, should be interesting. Seeing as I'm feeling incredibly negative about my back issues and the current situation with work. Well, TTFN! I'll try and update again later today.

The Straw That Broke the Camel's Back

So, just when I think the week can't get any worse I manage to slip a disc in my lower back and spend the day in agony. I managed to do it when I rolled over this morning to look at my clock, the top half rolled, my legs didn't, my spine managed to separate my pelvis somehow and then flay discs about. Ok, that was slightly exaggerated, a disc slipped and trapped a nerve. The pins and needles are a pain, but there's not much I can do about it.

I still went into work and suffered through a day, which was a bad idea as now I can barely walk and the pain is worse than ever. I was going to go home at lunchtime, but Brother was taking his theory test today. It's funny, they say no-one passes first time, except for Dad and Brother I guess. I'm sure he'll be doing his practical test soon and will be out terrorising the streets in his own car, which I'm sure he'll be buying soon.

Anyway, as Brother was out doing his theory, Mum and Dad decided to make a day of it by shopping in Chelmsford. So, the only choice I had really was to stay at work, rather than walk around Chelmsford or sit in a hot car for a few hours. An agonising day whichever way it went. The day dragged on like nothing I've ever seen, all I could feel was pain up to this knot in my back then pins and needles from there down.

When I got home, I slept, exhausted from the pain. I woke at gone six, feeling terrible, really negative and pathetic. I had some dinner brought up (as I couldn't move) which, sadly, was cold when I got to eat it, but food was food. I had a lovely chat with Myriam over webcam, she showed me the bracelet she bought for me (it looks really nice) and we generally messed about as usual (which was difficult seeing as every time I moved it hurt more) and it cheered me up.

Myriam is awesome, she makes me happy. She calms me down, sure I still have my negative swings, but she normals me out, I'm nowhere near as hyper when I'm with her or talking to her. I'm constantly told that I shouldn't rely on other people, but I need some support right now. I also managed to knock over a glass of coca-cola all over my floor. It was a huge pain having to ask Mum to come and lay kitchen towels all over my floor because I can't move, I think she wasn't very impressed either.

It's early in the morning right now, I can't sleep because I'm trying to get comfortable. I'm typing this out on the iPad while shuffling about, my back is killing. I won't be going to work tomorrow, I don't know if I'll be able to stand tomorrow let alone walk anywhere. I have a doctor's appointment for Tuesday, which isn't with my normal GP, but it's a doctor I've seen before and she's very good.

I'm just sick of all this jumped up messing about, after all that's going on at the moment, my back has to give way. Quite ironic that the straw that broke the camel's back was the camel's back breaking... I don't know if I should laugh or cry. Talk about a comedy of errors.

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...