16 Hours

until Rambo comes home. I can't fucking wait. I am falling apart here.

Crazy abdominal pain flared up out of the blue on Sunday and my Mebeverine for some reason isn't doing shit about it. Then Dini kicked me in the stomach and I was unable to walk/cough/sneeze/laugh/BREATHE PROPERLY for the next few days.

Pain level's been at 8-9 since Sunday. Moxie has not helped in the slightest. I have no spoons left whatsoever, have borrowed quite heavily from the bank, and once Rambo comes home I will take to bed and crash for a good few days.

Needless to say, I've not been able to get any writing done, and am fucking hating myself for that. I had over a fucking month to get this done and I left it until the last week because I write better with a deadline but I wasn't expecting Rambo to bugger off and crazy flare-ups to happen.

Dazed and Confused

Everything fucking hurts and I'm sitting here bawling and Moxie is looking at me so confused and apologetic but it's not her fault I'm hurting - she doesn't know how fragile I am.

And I'm so confused and brain-fogged that I keep not being able to remember when I last fed her and I have the sneaking suspicion that the reason she has hiccups and is retching right now is because she's tricked me into giving her two dinners.

And I keep having odd chest problems and not being able to breathe properly and making such loud fricking noises trying to suck in breath that Moxie for some reason thinks I'm playing a game with her and starts trying to attack me - WHILST I CAN'T BREATHE.

And my POTS is still flaring and I keep nearly fainting with all of the jumping up and leaning down to grab the Moxie when she's doing something she shouldn't.

Once again, I CANNOT FUCKING DEAL WITH THIS ALONE.

EDIT: Oh, and I still haven't written my Screamprompt and I'm running severely low on time but Moxie can't leave me the fuck alone long enough for me to do anything about it. I normally hide upstairs for hours when I want to write but I don't want to leave Moxie alone for that long.

Lack of Understanding

Just explained to my dad about Rambo and TMM leaving me all on my own to look after Moxie for a while and asked if I could stay at his for a bit and he gave me a very confused look and said 'Why? She's only little, it's not hard to take care of her!'

*sigh*

I'm never quite sure just how much he understands - at times he's very helpful with things and at other times he just can't seem to understand what the problem is or why I can't do things.

I'm just...I'm scared, from the subluxed rib and not being able to handle it and what if it happens again? There are times that I just plain can't move and there are many many times when Moxie needs me to get up and do things. When the two coincide there is trouble.

OW

Slept horribly. Went to bed with a migraine around four in the morning, woke up, migraine still intact, a total of four times from Moxie-crying and then woke up again at noon to the sound of a radio blaring outside my bedroom window - looked outside to see a BT van parked there, door wide open and driver nowhere to be seen but judging by the volume of his radio he was quite possibly a few streets over.

Migraine + blaring radio is even worse than migraine + puppy crying. Seriously. OWFUCKSHITCRAPFUCKINGOW.

I <3 Raspberry

I got a Tesco delivery earlier. I booked it for when Rambo went away to ensure that I had LOTS of ready-meals and easy-food around to sustain me whilst he was gone. I normally only keep a few in the house as a last resort but then I'm normally alright to cook...but then I normally have other people to help out with crazy psycho energetic puppy and other housework. I am so dead on my feet now.

Anyway, I got some comfort food in as well as I figured I would need it, and the damn people decided to substitute my raspberry sorbet for lemon. Who the fuck wants lemon sorbet? It's sour and horrible and most importantly - NOT RASPBERRY. I am sulking. Waa.

Also, Rambo called me about an hour ago to check how I was doing and I wanted to scream at him that I'm so not handling this very well and tell him about the subluxed rib and the psycho puppy and all the letters that I don't know how to deal with but I didn't. There's nothing he can do about it except come home early and I really don't want him to do that; he's visiting family in Derby because his brother's coming home for a week. His brother's been travelling the world for the last couple of years, living in Australia for the last year, and is only back for a week. He needs to see him.

I don't want him to come home early, and I don't want him to worry about me any more than he has to - there's nothing he can do about it. But I feel like I'm lying to him when he's asking me if I'm alright and if I'm sure I can cope without him and if I'm really alright and not just saying that and I say yes to all of the above. :/

Holyfuckingcrapshit

Just had a subluxed rib for two hours whilst a hyperactive puppy sat on top of me insisting it was playtime.

I cannot possibly emphasise just how incredibly painful that was or just how incredibly powerless I was to do anything about it.

Oshit

So, turns out Scouser's not coming as she forgot she had other plans that she'd already put deposits on. I am now officially alone. Until Thursday at least.

I am so fucking terrified that I have been in tears since Rambo left. I can't take care of myself, let alone Moxie as well.

I'm exhausted. I've not slept and I can barely move. POTS is flaring like mad and I've been coughing and sneezing for the last couple days so I figure I've got a cold (and a fever that's flaring my POTS.)

To top it all off, I just got letters through the mail saying:

1. Housing Benefit won't give me any more money until I send them the letter stating my ESA has ended. I never got the damn letter because ESA fails at their own bureaucracy and the only way I found out it had stopped was by phoning them to ask where the fuck my money was.

2. A new council tax bill for July-March stating I owe them £710, no mention of my Council Tax Benefit.

3. A letter from the estate agents saying they're going to be doing an inspection on Wednesday. When the house will be in a right fucking state because there is no way I can clean it and look after me and the dog - and if there's ridiculous amounts of puppy-related mess they may well change their minds about me being allowed a dog.

4. Finally got my new Choose & Book letter and once again the only appointment available is THREE MONTHS from now. I've not booked it and will just keep trying every day in the hopes of a cancellation I guess.

I CANNOT DEAL WITH ALL OF THIS SHIT RIGHT NOW.

Overwhelmed

I have not been able to sleep properly in days. Partly due to night-pain, partly due to waking up to pee, and partly due to crying puppies outside my door demanding all of my attention.

This means I have very few spoons to start each day with, and not as many as my puppy demands from me each day.

Rambo's going away for a while on Friday and I don't know how I'm going to cope. Scouser's coming to stay for the weekend, supposedly to help out but I feel that trying to be awake and sociable for her will just drain me even further.

Moxie ate my brand-new headphones that were so awesome last night. I blame myself for leaving them out for her to chew, but I didn't realise that going upstairs to the loo would end with me being stuck up there and going to bed. I asked Rambo to put my laptop away, but he didn't even shut it down, let alone put the cables out of her reach.

I don't know why something as stupid as having my headphones eaten should put me into such a state of depression but I think it's more of a last-straw kind of thing.

I am so not dealing well with anything right now, and so terrified of next week, and so overwhelmed by it all, and I just don't know what to do.

Emo

What the hell do you do when you're in too much pain to sleep but are too damn tired to stay awake properly?

I spent the last hour lying in bed crying as quietly as possible to myself so as not to wake Rambo but it got boring pretty fast and when I finally realised what the music that had been playing through my head for the last hour was* I just had to laugh, and get up so I could do that downstairs away from sleeping boyfriends.

The pain seems to be hitting me extra-hard lately, but I don't really think the pain's gotten worse in itself (hanging around 7.5 at the minute). I was just so sure that I was going to finally get to see the rheumatologist this time and so sure that he'd be able to give me some stronger painkillers and that they might actually work. I'm just...completely crushed by having that ripped away from me once again. I can't deal with this pain forever, I've been holding on because I knew I would have some pain relief soon, but that 'soon' never quite gets here and I'm slowly deteriorating in the meantime.

Spent the last few days in the kind of depression where I'm wondering what the hell the point of living is if this is what my life is going to be like - scratch that - if this is as good as my life will get. I'm slowly getting worse all the time and I will never be better than this.

I'm not going to kill myself or anything, put the phone down, I don't need the police to come check on me. I won't, because I know how upset that would make some people (and also because I'm fucking terrified of both death and the pain that comes with it. Yes, you heard me, I am living with pain 24/7 and am still TERRIFIED of any pain whatsoever.)

But I can't help thinking, at the moment, how damn selfish those people are for wanting me to keep living when I'm in this much pain.





*I'm much too young to feel this damn old.

I Should Have Known

Know that horrendously bad luck I mentioned that makes bureaucracy impossible for me to deal with? Turns out that my rheumatologist appointment that I had today, that had been booked over the internet, confirmed over the phone and via confirmation letters, and had a reference number and everything, DID NOT EXIST. The hospital had absolutely no record of it whatsoever.

At least they didn't discharge me this time, so I don't need a re-referral, but they're sending out a new Choose & Book letter which will take a while to get here and then I'll have to wait another month at least for the next available appointment. *sigh*

It's been well over a year since I first started trying to see a rheumatologist. This is getting ridiculous.

Many Different Things

Puppy -

Moxie learnt how to get down the stairs this morning, did it a total of four times today - then she fell down a bit (three steps before I caught her) and is terrified of going down again, yet still insists on going up there and getting herself trapped!

Also, my wrists are slowly dying from playing tug with her earlier. When I got her I agreed with Rambo that whenever she wanted to play tug he would take over from me, but as soon as I hand him the rope she loses all interest. It's odd, because she'll play every other game with him, just not tug.

Rheumy -

Going to see a rheumatologist on Thursday, been waiting for this for over a year now (due to various bureaucratic nonsense and my horrendously bad luck that seems to only come into play where bureaucracy is involved) and I can't believe how excited I am about seeing a doctor. It's quite worrying, really, and knowing my luck I'll get one who knows nothing about EDS. Oh well, fingers crossed still.

I wrote out a huuuuge list of all my symptoms that I could think of, along with medications and family history, so that I can't possibly forget anything whilst I'm there and have to wait months and months to be able to see him again, but am worrying that I've managed to leave things off the list anyway. Just a niggling feeling that I've forgotten something very important but can't for the life of me work out what it is.

Oddness -

I woke up this morning feeling completely disorientated. I guess that's kind of normal, if rare, and nothing to get excited about...except that it wasn't confined to just where I was. I was dreaming about some dogs, and then I woke up and thought to myself 'I have a dog, don't I? Was it any of the ones I was dreaming about?' and spent a good couple of minutes going through all of them before realising that no, it was Moxie, and I did not dream about her. I then thought about the guy that was in my dream and it took me, again, a good few minutes to work out that he wasn't my boyfriend, but I did have a boyfriend, and remember his name. I then wondered why I was in pain, and it took me another five minutes to remember who I was and what was wrong with me and why things hurt.

That's all kind of worrying, no?

Also, in the middle of the night I was scratching my ribs because my arm was itchy and I was convinced that was where my arm was as everything had gone numb (but still itchy...hard to explain) and I couldn't really feel where my arm was. Took me a while to realise why the itchiness wasn't going away.

I'm hoping this is just because I only had two hours sleep the night before (subluxed rib, ugh) and then took an Amitryptiline on top of that, which makes me sleep ridiculous amounts, and this is just my body's reaction to being so damn tired. Even so, it was kind of scary.

Game Over

Moxie ran out of levels! I can NOT keep her off the stairs. I give up.

I thought we had it last night before we went to bed but then I got woken up by a puppy crying outside my bedroom door. Took her downstairs, rebuilt barrier, woke up this morning to a puppy curled up in my laundry by the stairs. Took her downstairs, gave her breakfast, rebuilt barrier, went back to bed as I was tired. Ten minutes later she's crying at my door again. Then Rambo got up, and didn't realise I'd already given her breakfast. Cheeky puppy cried for food and got two breakfasts. No wonder she's so round!

I kind of don't want to go to bed tonight because I know she'll follow me and I don't want her sleeping up there. Partly because she has no toilet or water bowl up there and partly because if she does attempt to go down the stairs (she's still not even tried one step of that) then she may well fall and hurt herself.

Maybe I'll sleep on the sofa tonight and try to make a better barrier tomorrow.

Level Four

Moxie's getting way too adventurous! She climbed the stairs this morning - she's never been able to go past the first step before - but was too scared to try going back down them, which is good because she's too little and would fall, so I had to carry her down and try to block off the stairs. Went back upstairs to get dressed, she followed me in under a minute.

Level two barrier was set up after that but I was downstairs so she had no interest in trying to break past it, until I tried to go upstairs to the loo. Barrier level two took maybe two minutes, tops.

Level three, again, held for a couple hours as there was nothing interesting going on upstairs, but then Rambo came home from work and I talked him into giving me a bath. Level three barrier took five minutes, then she barged into the bathroom and got very confused by the noise of running water and wondered why she was getting splashed in the face. We let her stay there and she whined at me the whole time, then we gave her a bath afterwards. That'll teach her to stay out of the bathroom. ;)

Level four is as yet untested as I've been curled up downstairs with her, but it's not much sturdier than level three and I doubt it will take her too long. Maybe I need to invest in an actual barrier rather than random things lying around the house as my construction skills are apparently no match for her climbing ones.

Oh yeah, I also bought a new SD card yesterday (whilst getting some replacement headphones as she shredded the old ones!) so when the mailman brings me it you will all be inundated with Moxie-pics!

A Scouser in Manchester

An old Scouser friend who I've not seen in over five years came to visit on Monday. We met over the internet, via an old game (Quest*) that I've not touched in years, and although neither of us play it any more, we still talk on msn and facebook and the like, as we do with most people we met there. In fact, that's where I met both Rambo and The Music Man. Felt like we were having an actual Quest-con over the last few days, was pretty awesome recalling old times and old gossip and drama.

Anyhow, Scouser just got dumped (over Facebook - how classy) and needed some cheering up so we dragged her down to Mancheeseter with us, drank lots, ate lots of junk food, went out to pubs and cinemas and the like. Oh, and played with Moxie - that'd cheer anyone up!

So incredibly exhausted trying to act normal and be sociable and the like as the last time I saw Scouser I was so much better than I am now and I was trying to my hardest to act like nothing had changed as I didn't want to dump it all on her suddenly but she was wonderful about it all and actually quite jealous of my awesome purple wheelchair**! But despite her being awesome I still found myself quite (ashamedly) relieved when she got ill Tuesday night/Wednesday morning as it meant we could spend yesterday just chilling out at home, curled up in quilts watching bad tv and trying to play Monopoly without Moxie knocking the pieces everywhere.

She went home last night. I miss her already but really, really need some resting time before I can deal with the world again.





*http://www.questrpg.org

**Which still needs a name, actually. All the folks over at Spoonville have given their chairs and canes awesome names.

Procrastination Is My Middle Name

I just realised that I can't actually remember the last spontaneously nice thing Rambo did for me. It's not that he doesn't do things for me, but I always have to ask and then feel guilty for asking; and it's not that he's not affectionate, it's just that I always have to initiate it.

I'm not really asking for much, just, you know, it would be nice if he went to make a cup of tea and would make me one as well, or at least offer. I make him tea when I make myself some. If I'm cooking food I'll cook for him too. If I'm getting myself a snack I'll get him one as well. If I'm putting a movie on I'll deliberately pick something we both like.

He just...doesn't seem to ever think about anyone but himself, unless prompted to. I'm not sure that that's not just normal for males, but it upsets me, as I'm nearly always thinking about him.

There wasn't really much point to this rant. He's just being male, and I'm not really worried about it - I'm just procrastinating because I'm meant to be writing stories about drop-bears and I need to do some damned research about Australia in general. Naughty me.

The Dice Hate Me

Update on the brainstorming thing. I suck at coming up with ideas right now, apparently, and I enjoyed the randomness of how the conflict was selected, soooo I carried on the random idea. This is how it went, in order. Red is what I rolled.


Type of nature - Earth/Air/Fire/Water/Animal

Location - Jungle/Plains/Zoo/Forest/Australia/Artic/Desert/Sea

Main Character:

Gender - Male/Female

Love interest? - Yes/No

Age Group - Teens/20s/30s/40s/50s/60+

    Age - 50/51/52/53/54/55/56/57/58/59

Married currently? - Yes/No

    Why not? Never married/Divorced/Widowed

Why in location - Visiting/Live there

Nationality - American/Canadian/Scottish/Welsh/English/Irish

Intelligence - Dumb/Average/Smart

Kids - Yes/No

    How many? 1/2/3/4

    Gender - Male/Female

    Age - 15/16/17/18/19/20/21/22/23/24/25/26/27/28/29/30/31/32/33/34/35

    Intelligence - Dumb/Average/Smart


Oh dear. Dumb American visiting Australia. I predict drop-bears. Anything else I should be rolling for? I'm running low on ideas even for this.

Memory Fail

Suddenly remembered I was given writing assignments a while ago, was meant to have a week for brainstorming and start writing on the first, only just remembered about it so am two days late to start writing and haven't even done any brainstorming! Whoops!

Have to do a 3k+ word story about conflict. There are seven basic conflicts, he gave each a number and rolled a d7 for each of us - I landed on Man Vs Nature. Woo.

So, if anyone has any ideas, gogo brainstorming!

I'm Such a Crybaby

In the middle of a POTS flare, so having difficulty with being upright and difficulty with lightheadedness and brain fog and headaches and all that crap. Can't really think straight. Feeling like crap for getting a puppy when I can't look after her during flares like this. Feeling like the most horrible person in the world. Then Rambo makes me feel even worse for daring to ask him for help with things and to request a clean fork to eat my dinner with, and then my sister starts on at me about 'final utility bills' from when she was living here that the company wants her to pay before she can close her account and pass it over to us. We already gave her rent for the month those bills are from and our rent included utilities, but she's insisting we should help her with these bills. I don't have a spare £80 to give her and I can't think straight enough to deal with finances anyway.

I think I need some sleep. Maybe some ice-cream first to get my temperature down a bit, that'll help the POTS.

This crying won't help my headaches though. I should really quit being such a fucking crybaby, it's getting ridiculous. I honestly can't remember the last time I had a day where I didn't cry and it's always for such stupid idiotic reasons.