Sleep came to me a bit last night so I’m feeling better today. I went to sleep around 11 and woke up around 2. I think I slept twice more before I got up properly at 7:20. Main problem really is that I get hungry, so at 3 o’clock last night I had carrot sticks, cucumber and hummus. Yum!

I went for a walk around midday. I made it to the end of the street in good time so I figured I’d go ahead and do the block [this is still much shorter than the 15 minutes I did two days ago]. I got most of the way around and it got very very difficult. I barely made it and was completely exhausted by the time I got in. Took me 15 minutes. So tomorrow I have to be more cautious. When I go walking, I just throw on my cycling trousers [comfy, warm] today was sort of windy and I realised that my trousers were blowing around my thighs. These trousers are stretchy and tight for exercising, they’re not supposed to be baggy. My legs have deteriorated that much. I measured my wrist today when I realised that I could touch my thumb and ring finger round it – 6.5″, my wrists haven’t been this small in years. So then I had to measure my waist – it is the same so clearly just my limbs are melting.

As of yesterday, I finished with the antiviral drugs that were treating my facial paralyses. I’d say my face is 95% back to normal, I don’t have as many smile wrinkles on the right and it is definitely a lop-sided smile. This drug had to be taken five times a day and now I don’t have to worry about it – bliss!

I’ve also finished with the pill version of the steroids, I started taking the surprisingly yummy [minty!] liquid form today. I take it three times a day for a few days then twice a day and stop. Taking fewer medications is definitely good!

One thing this illness has provided? Time. I feel like all I have is time.

I’ve done things like burn a CD of all my journal archives as they currently stand, so I don’t have a repeat of almost losing everything. After I did that I went through all my photos and deleted ones I didn’t like/want/need, removed the doubles and organised the rest into sensibility. Then I burned the whole lot to a DVD. If my computer suddenly decided it needed to die I wouldn’t lose anything. Bliss.

The time also means I finally upgraded WordPress for me and Weasel, I went from 2.0.1 to 2.3.1 so I needed to do it. The upgrade process looked so scary and I never could find the time to figure it out. Everything looks so shiny now and I totally get to explore all the new little features. Fun.

Robin from work called randomly today. I panicked while I was on the phone and tried my best to explain how I was without having to tell the whole story. I haven’t spoken with her since the end of September. Telling someone about your face breaking, panic attacks, hospital stays, exhaustion, guilt and everything in between while trying to be quick and not stress was a challenge. Thankfully I think she understood and was kind and it was good to hear her voice again. I just don’t think I’m quite ready to deal with it all yet.

My ENT appointment is now the 17th of December. It just gets more silly. I have a blood test scheduled for the 11th now, but I needed to have one last week and this week and every week while I’m being treated. So on Monday we’re off to the doctors and we’ll have to see if they can pull any strings. Meanwhile, I will not be panicking as best I can.

Note: I am suffering from three days of insomnia, so this Debbie is very very boring. I apologise.

My walk yesterday went very well. I managed to get a hell of a lot further in a shorter amount of time. I also did the full 15 minutes. I’m not sure that I get out there today, I’m waiting to see how I feel.

I didn’t sleep last night that I know of, so we’re three nights in of mostly no sleep. I haven’t had insomnia like this since high school, I’d forgotten how disorienting it can be.

Being up all the time gives me time to think so this morning I mentioned that I was going to research a bit about the sleeping pills I’d been taking because I suspected it was all related. Weasel very kindly offered to look it up instead so I wouldn’t get additionally stressed. Turns out my hunch was right – at the point when I stopped taking it there would be rebound insomnia.

So I’m riding this out now too.

Three days of virtually no sleep feels very strange and my whole body feels even more misshapen, soft and strange. I feel like I have jelly legs, getting up and down the stairs is a little challenging.

I’m kind of proud that these changes haven’t freaked me out more. I had a lot of issues with my body for a really long time and only by exercising and eating right and working so hard did I come to appreciate how wonderful it was. It may not be the prettiest, but it worked and it worked very well. It makes me sad that I can lose so much so quickly, but I also know that it’ll be great when I get back to myself.

I got my follow-up appointment with the ENT today – December 10th. This is annoying because when they discharged me they said they wanted to see me in two weeks. The fact that I had to get an extension on my antibiotics after worries me and I wanted to be more monitored. Also since my right ear has started the whole brownish/red discharge thing I want to be very sure that I am not getting worse and going to end up back in hospital. There’s also my work coverage, I’m supposed to see my GP before the 11th to get my situation reviewed, there’s no point in reviewing the situation if I haven’t seen the ENT. I’ve got Weasel on the phone for me yet again to see if we can get an earlier slot.

The puzzle I’m doing has taken an interesting turn. I have a huge expanse of blue sky which I’ve nearly completed, I have six holes. The problem is that the six pieces I have left don’t fit in those holes. Which means that there are probably at least six pieces that are in the puzzle incorrectly, but I can’t see them.

There’s a restaurant in my home town in Idaho called Fiesta Ole. They have a wonderful product called a Crisp Bean Burrito. I’ve been thinking about it a lot lately. Craving it. However, travelling 4000 miles for a burrito is not necessarily a good plan. Basically, it’s a lovely torilla filled with beans and deep fried. The beautiful thing is the little dipping sauce, I recommend ranch dressing [which I can't get here grr]. Anyway, I’ve been scheming and I’ve bought the beans and the shells and I’m totally going to try and make something myself. When I can stand up long enough that is.

Otherwise I’m just ticking along. Books, music, puzzle, computer, TV… finished Firefly so back with Simpsons. I miss being a real person.

During October when the pain and misery was at its peak I wasn’t sleeping. Doctor prescribed sleeping pills which helped. I tried to take them as needed and only every other night, but I simply couldn’t sleep. So they decided I could take one every night for a while, this took us up and including my hospital visit.

After the hospital the pain stopped [I still haven't had any painkilers!], but the anxiety was so severe that I couldn’t sleep. So I kept on. About four nights ago I started having trouble falling asleep and I’d wake up around 4:30 and have trouble getting back.

So last night I decided since the pill wasn’t working I’d stop taking it.

Monday night saw me sleep around 1 to 4 then 7:45 to 9:30. Tonight I slept I think from about 1:30 to 3:30.

I think part of it is that I am not physically tired like I used to be. I can do my 10 minute walk a day and enjoy it, but walking for 10 minutes does not compare to anything I was doing before. Yesterday I managed to cover more ground in the same time, so today I’m going to try for 15 minutes and see how I do.

I’ve been filling my days with the latest Anita Blake: Vampire Hunter Book by Laurell K. Hamilton [which is back on form compared to the previous book!!!], watching Firefly – last episode today, tidying up my hard drive and backing up my websites/writing stuff finally, a 1000 piece puzzle while listening to MP3 player and resting. A lot of resting.

Stoat, Mal and Doodle were here on Monday. Seeing them wasn’t as hard as I thought it would be, but it was still a challenge. The anxiety has made things seem bigger and scarier than they are, I wish knowing that made me feel it less. I’m not sure when we’re seeing them next, but it’ll be even easier.

Horatio is coming to see me on Sunday. This is the second longest time we’ve gone without seeing each other. I saw him and stayed in his flat for the first the last weekend of September. He is just coming for the day, we’re going to get pizza, watch stuff on TV and play games. I’m hoping Weasel and him will be able to entertain each other if I need a rest too. I’m nervous, but excited too I think. Right now I’m just focusing on the excited.

I have had two really amazing gifts this week.

First
My family sent me a video. When I spoke to them all on Thanksgiving I told them that my favourite part was the 10 O’clock Turkey Sandwich. After the huge meal in the afternoon, around 10 you’d start to feel a bit peckish – nothing to big, just something. So grab one of wonderful home-made rolls and put a nice thick layer of Miracle Whip and a nice chunk of room temperature turkey and … wow. Heaven.

I waxed lyrical about this sandwich to my Mom, Dad and Blanketgirl in turn. I dream about this sandwich. The turkey to make this sandwich cannot be bought. The beauty is that it has been sat out since lunch cooling.

So my sister said they’d all have a sandwich in my honour and take a photo. I waited a day or two and then got a link instead. They’d made a video of them having the sandwiches and I got to see them and hear them and it was amazing. They all look so wonderful and I miss them so much right now.

And damn those sandwiches looked good.

Second
A package arrived for me today. My first response is always to try to remember if I ordered anything. I haven’t lately so of course I asked Weasel if she’d got me something, again no.

Opened it up and it is the entire Planet Earth DVD box set – the really amazing fancy BBC one narrated by David Attenborough [whom Weasel loves].

My friend Kharn sent it to me! I got goosebumps! I’ve never ever ever ever had anyone do anything like this for me before [as a friend I mean]. He basically said it was early Christmas and wanted to help me feel better if he could. Amazing.

Both of these have given me such a lift.

Not about gifts
In other news, I finished my course of antibiotics yesterday and I delighted by having some egg nog. I wasn’t allowed milk/yoghurt within X number of hours of the antibiotic so I just avoided them rather than counting. Anyway, last night around 4:45 I woke up and my ear was discharging again. I haven’t had any discharge since I went to hospital. So Weasel’s been on to the doctor and I’m back on the antibiotics tonight. I am not going back to hospital if I can avoid it and I don’t want to take the risk. Also got a prescription for the six pills I was missing. So medicine-wise I’m on track.

Things I did today that maybe I shouldn’t have

• dried my hair
• tidied up the kitchen counter
• did a few dishes [only like five, but still]
• folded all the dried clothes
• put the towels/pillow cases away
• tidied away the last of the pile of stuff from the hospital
• took all the clothes in the lounge back upstairs

Things I did today that were awesome and definitely worth doing

• started my day with V8 and orange juice!
• sewed the buttons back on my gloves two years after they came off
• fixed two bras
• caught up with the downloads of three shows
• placed a grocery order
• watched a few episodes of Firefly
• finished the last collected volume of The Sandman again

I have one drug I have to take regularly five times a day. I set a timer on my mobile to help me remember. I just spent the last 15 minutes with my phone sat in front of me ready to hit the stop button the second it went so I wouldn’t wake up the cutely sleeping Weasel.

Only to look at the clock seconds before it went and realise I was an hour early.

My next dose is 6pm, not 5pm.

All this drug taking is a challenge. I counted today, I took 14 pills this morning. I have another 10 to take over the course of the day. On Monday, I take the methotrexate, 10 pills of it alone.

At 3pm today I went to take my steroid and I again carefully read the instructions like I do every time and it said I needed to take two pills three times a day on days 4-6. I panicked thinking I took three this morning. I can’t remember well enough. So I thought, I’ll just count all the pills out for the remaining days and if I’ve taken one too many, I’ll take one less now, no harm no foul. I put the pills into neat pills for days 7-9 then tried to finish 4-6. I ran out of pills. I re-re-re-re-read my instructions. I’m positive I’ve been taking it correctly.

I woke up Weasel and asked for her help, we counted together. They’ve short changed me two days [six pills] worth of the drug. She’s going to call the doctor on Monday and get some more for me. Meanwhile, I took my dose as usual and all it okay. I’m where I ought to be.

Last night, at 11:30 I went to bed. My heart was pounding and the tightness in my chest was worse than ever before. Then I realised I missed my beta-blocker earlier in the evening. So if I was in any doubt about its helpfulness that this point I have been reassured.

This obsessing is definitely a new feature of anxiety that I haven’t had to cope with before. I’m trying my best to roll with the punches and talk myself down. Reassure myself that nothing is unfixable, nothing is the end of the world.

I meant to say that Weasel brought me beautiful flowers in the hospital. Six gorgeous roses – two dark red, two orange and two pink. They made me feel so much better having something so beautiful and connected to her. She brought them on the second day and all the nurses all said that they were so lovely and someone obviously loved me etc. then on the final morning before I went home, one of them said flowers were not allowed on the ward. I was just glad they let me keep them. Perhaps my constant crying throughout my visit made them think better of taking small pleasures from me.

Last night, I slept in my real bed. I haven’t slept in my bed since… mid-October? Because of my nose/head issues I had to sleep propped up, I tried to stay in bed, adding more pillows and cushions. I remember the last night before gave up and moved to the sofa. I’d ended up on my stomach and I had a strange dream about an inn and an ex-husband who travelled with me his new wife. I dreamt I fell asleep on one of those chairs with metal rivets around the edge. My head felt like I’d been riveting it all night. This was par for the course at that point. I was in constant pain. I’ve never had to have so many painkillers.

Which makes this next bit that much more incredible. I haven’t had any painkillers since Tuesday. Not one. I’ve been a little uncomfortable – anxious of course too. But I’m not hurting so much. It feels amazing. Other thing that feels amazing that hasn’t happened since mid-October? Orgasms. I went to bed last night. I was pretty sleepy so I thought I’d see how I did without a sleeping pill. I was awfully tense though and I don’t know if it was because I was back in my traditional entertainment spot but little voice said, ‘you know what’s relaxing?’ … so I got all my stuff out and wow. It was so strange. My body feels so foreign to me right now. My legs don’t feel like my own, my face doesn’t look like my face. It was so strange, after that long my body had all new tingles and strangeness to add to the experience. It was incredible. It helped me relax, but in the end I took the pill. I woke up a few times, but I wasn’t in pain.

I’ve been to the doctor’s this morning. She’s signed me off work for another three weeks, I’m to go back before the 11 December. I have the ENT in two weeks and vasculitis clinic in three weeks. So I guess now it is just a matter of waiting and trying to stabilise. My nose is a normal size. I’ve been re-assured that the saddle nose can be corrected. I’ve asked about walking, she’s made it clear I should build gently over time. I walked roughly half-way home from the doctors then had Weasel call a taxi. Everything is just harder. I am going to spend the next few weeks just trying to figure out where my limits are and trying not to overdo it.

I have put the headphones on the media server and I’m listening to Holly McNarland and WOW!!! Music is so important to me and being without it for the last month and a half was hell. I’m so happy to have music again. I feel like I can breathe again.