What a fun few days. Yesterday morning my site was working great, yesterday afternoon my theme stopped working. I tried a few things to no avail. Today I deleted WordPress and re-installed thankfully it all came back. I have been browsing for a new theme for about a week and I am actually going to make my own. So we’re going to keep the original blue curves theme without my tweaks here until I unveil the new version.

My legs. Oh lordy my legs. Something has gone horribly wrong somewhere. I’m on morphine all the time as you know but I’m still getting so much pain from my legs. It is definitely muscles and not bone [thank god] and it comes and goes with no bearing on anything. Walking or stretching makes no difference. Rubbing helps, but only if Weasel does it [I just seem to make it worse when I try]. It means I can’t walk sometimes and when I do it is very difficult. Standing is also fun, so if I have to brush my teeth or douche I end up sort of dancing as I do it trying to find a position that doesn’t make me want to kill myself.

I’ve been wearing flight socks for the last four or so days and they seem to help, but I worry about wearing them constantly, am I going to do more harm than good? Seeing GP on Monday so going to talk about this and variety of other fun topics!

I wrote this two nights ago…
I’m very tired. I want to go to bed. But. I know that when I get to bed, I’ll lie down then cough. Cough some more. Cough more. My eyes will water. My head will pound. 20 minutes later I’ll get to listen to my Weasel’s even breathing as she starts her first dream of the night. An hour after that my first drug alarm will go off. 1.5 hours after that I’ll need to go to the bathroom. Another hour brings another drug alarm. I’ll cough some more. I might not be able to breathe and I’ll have to go have a 2am douche. I’ll try to sleep, while my legs throb. I’ll bite my cheek again. Sip of water. 1.5 hours later I’ll need to pee again.

Going to bed is exhausting. I never feel rested in the morning.

Random things that have occurred to me in recent days…
Why hasn’t anyone made a RomCom called Rules of Engagement? Ho ho.

Damn but dijonnaise is gooooood. Try it with chips [aka fries].

The phrase “I’ll e-mail you.” bothers me because it can imply that the person will be somehow attached to the message and sent. I know logically that it is correct, but it can be read both ways.

Ending on a happy note – my sister has set-up her own journal! Go read and be impressed, she’s an amazing person.

The last few days have totally kicked my ass. I’ve been soooo very tired. I’m not sure if it is because of the hospital visit, the drugs I received at said hospital, the fact that I can’t seem to stay asleep for longer than 1.5 hours or if it is something else all together – or a combination of all of the above.

My legs are still aching, I’ve eased up on the walking, I only went around the block yesterday and will probably do the same again today. I’ve added some gentle stretches to try and help. I’ve looked up the side effects of my newest drug and it isn’t one, so I’m assuming it is just getting my legs working again after such a long time off.

My hearing is bad again, poor Weasel has had to start shouting at me again and I had a stupid melt-down at her because I get so sick of saying what all the time. I have a hard time on the phone too, so I’m sad because today I should get to talk to my sister. I’m hoping I’ll get lucky and I’ll be able to hear her okay. If not, we’ve found that she and Weasel get on like a house on fire so I can live through them.

Doodle came over last night for the first time in months. It was so nice to see him. He was a regular fixture on Friday nights for years for band practice, junk food and bonding. We watched four episodes of South Park that we’d missed because of my illness. We ate delicious pizza and he and Weasel got to play some beautiful music together. We also got to reassure ourselves that we’re not crazy. Stoat has an idea for a website that keeps changing every time we talk to him about it. The last version I knew about, I realised yesterday would be a waste of time and money and would result in a lot of grumpiness. I said as much to Doodle and he was able to confirm that he had reached the same conclusion. So the plan is to have a long talk, write ideas down and then see how we can move forward – all of this happens the next time I’m well enough to go to their house. Who knows when that will be though.

I get to see Horatio!! Weasel is going to see her friend [so want to spill on this, but respect for Weasel makes me hold back] on the 9th of February so Horatio is being so very sweet and coming down for the day on the train. It is like six hours of travel, but it’ll be so worth it. This has been so hard because I haven’t been able to talk or hear so the phone has been severely limited, the computer is a bit hit and miss for me too so sometimes it’ll be two weeks between talking. Thankfully he is a patient type and has been so kind during all of this. I’m just excited to be excited to see him – I haven’t been well enough to be properly excited until now.

I have a lot of notes and e-mails I should write and I haven’t. I just have a hard time getting started. The first thing I had to do was get a summary of my illness up somewhere – which I have. I also wanted a copy that wasn’t on my website so I could share it with my family and some friends – now that’s in place too here: http://homepages.nildram.co.uk/~spacedog. Now I just have to write the notes to go with it. This weekend was just hard for me I think. I’m hoping I’ll perk up as the week goes by.

One very good thing – I finished the oral antibiotics finally! One of them I had to take twice a day and I wasn’t allowed to have diary products at the same time. No problem in the morning, I skipped my yoghurt and Yakult and had soya milk instead. Dinner though pretty much always involved cheese. Weasel and I love cheese. So if we were late having dinner, I’d have to set alarms in the night to take the second one at 11 or similar. I’m just so glad to be free to have dairy any time! I have to find any good I can in my life at the moment.

My parents gave me a £40 Amazon gift certificate for Christmas and lordy I am spoilt for choice. I have a wish list that is fairly up-to-date, but there are so many things I could get that I hadn’t thought of – like Nintendo DS games. I’ve never browsed any of them before. Thankfully I have a year to settle on something.

I wish I had more to say, but I’ve just been feeling under the weather and tired – nothing has really happened.

Hospital yesterday took seven hours. We got there at 9:15 [traffic delayed us], had some blood tests, wandered around the hospital until 10:30. Sat around, had the saline solution put in [three hours], waited some more, had the cyclophosphamide [40 minutes] then another 10 minute bag of saline. We got home just after 4.

The whole thing was surprisingly tiring for me. Sitting around reading, playing on the DS, talking with Weasel… E was at the hospital getting some tests done too and she was able to come see me for 30 minutes or so around lunch. We realised we hadn’t seen each other since August. They still don’t know what’s wrong with her, I feel so bad. At least I know what’s wrong with me and I have some of the best doctors in the country for it treating me. It was so nice to see her though, I have felt so isolated and seeing a familiar face and getting to talk over all the things that have happened was so good.

I just wish I didn’t find it all so exhausting.

My legs hurt again in the night and they kept on into today so I’m taking it very easy. Had my shower, did all my drugs of d00m and then moved very little. So far I’ve watched an episode of The Brady Bunch, Medium and a film with Weasel over lunch – Strictly Ballroom. We watched Singin’ in the Rain last night – oh my god it is bad. Bad in a very camp way. We both thought it would be excellent if you watched it high. It was definitely worth seeing once but I doubt I’d seek it out again [not unlike 2001 A Space Odyssey].

Weasel and I also took some time to review our last few bank statements and our budget today. We’re doing surprisingly well. If we stick to necessities only and we actually have over £500 that could be saved each month – even without my income. I think we were both taken aback by this. We’re also looking into apply for incapacity benefit for me so we don’t end up in any scary situations. I tried to do it myself, but I’m really not having the best day brain-wise, so I’ve handed the link to Weasel and hopefully we’ll get it sorted soon. I’m only getting half pay this month and then I won’t be paid until I’m back at work.

I’m putting loads of things [books, manga, DVDs, videos] up on Amazon’s Marketplace too to try and get some extra pennies in. Once I have them up I’ll link here if anyone is interested.

I keep thinking with my pain under control I ought to be able to at least think about work, but then I have days like today. All I did was sit at the hospital yesterday, no major brain activity, no physical exertion – just sitting. At work I’d sit too, but I’d have to use my brain a whole lot [which is still hard for me] and then I realise that work is still just beyond me. The fantasy is a nice thought though so I suspect I’ll keep on with it.

Blanketgirl had a medical nightmare last year and it hasn’t gone away. She’s managed to find a doctor who is willing to help [finally!!] and is preparing for surgery on the 3rd of March. Please add her to your thoughts and prayers when you think to. This has all been really hard on her and her family [and on me!]. We would very much like our health and happiness back please.

You’ll notice a new link there on the right. I’m tracking my illness and I finally have somewhere I can point people to when I want to say what’s been happening. Sweet.

Last night I had a coughing fit. I left the room so I wouldn’t bother Weasel as much. I got into the hallway and my god my legs hurt. My brain immediately started cycling through all the medications I’m on and trying to figure out what could have caused this side effect. Once the fit was over I went back to bed tried my best to just ignore my legs. Today when I got up, they felt fine. Phew! Then I went for my walk around 12:30. Half way through my legs started hurting again. I did 30 minutes today and yesterday it was 20 maybe 25 minutes. So the pain? It was me using my muscles in ways they were no longer accustomed to. I’m relieved and pleased, I like that I can walk that long and at a pretty good pace. My breathing is still difficult, but I can do it. I was pretty tired when I got home, but lunch and sitting on the sofa seems to have fixed me.

I watched the first episode of the first season of Medium. WOW. This is going to be an awesome show and Blanketgirl was totally right, it is a good example of a healthy marriage on TV! Weasel’s friends recommended NCIS to her and her friend Nick went and gave her the first season box for her birthday. She’s been watching it on her own so I only saw the first two eps last night. Good stuff. I think it’ll get better as the character development continues and they figure out how they work best together. The plots are good so I’m excited to see how it turns out. I like having new things to watch.

Horatio today suggested needlepoint to me as something to do. I totally never thought of it. I love doing it, but I haven’t had time in recent years. I have a pattern that I got from Weasel’s Nan like four years ago with kittens so I got it out today. I’ll get started later on I hope. I still have one puzzle left to do and there’s all sorts of movies I can watch. I’m definitely not bored.

It has been very gloomy outside today. It just started raining and when I went to the door to see it all properly [I love love love rain] it had bits of snow in it!!! How exciting. We haven’t had any snow this year so it’d be fun to have a little bit. It never sticks around, but it sure is pretty when it falls. Thankfully it wasn’t raining on my walk earlier.

I watched half of Music & Lyrics yesterday and half today. I have their song in my head now. Grr. It isn’t a bad song, but it isn’t my usual ilk at all. I was actually rather pleased by this film, I kept waiting for one or both of them to fuck up the relationship and it just didn’t happen. They totally just got on with it and had a cute little how we met story to tell at the end. My predication was that our male lead would get caught kissing/shagging the pop star. So I’m glad that didn’t happen. Yay for RomComs.

Did I mention that as of the 7th of January Weasel and I have known each other for 10 years? At the tail end of 1997, I e-mailed her and asked to write for my site. She replied on the 7th. So officially we knew each other existed. We fell in love over the next five months and … love love love being in love with this woman. Best thing I ever did.

Speaking of Weasel, she had team meetings yesterday and today. I got to iron her two nice shirts and with her new haircut she was looking fabulous. She cleans up good. She came home yesterday pleased as punch because this whole being awake thing is knocking on into work and she is performing really well and making herself look all kinds of shiny. It also means that today, she’s gone to the meeting, plans to cycle out to my office to collect some paperwork we need to claim benefits with, she’s going to nip to a shop on the way home and finally tonight is going out to a meeting to protest a proposed Tesco. I’m so excited that she has the energy to do all of this. I’m sure she loves it even more. These last couple of weeks with her being so on the ball have just been heaven. I never want it to end. I’m so so so proud.

Yesterday, I finally looked up information on Wegener’s Granulomatosis [WG]. Even though my diagnosis came through in October, I was so anxious and ill that I just couldn’t do my own reading. I relied on Weasel to look it up and arm herself and pass the best information on to me.

So yesterday for the first time, I saw lists of symptoms, treatments and statistics… it wasn’t new information per se, more that it made what I knew more real. Things like only 8.5 people per 1 million actually get WG – rare. That is it like cancer in that our end goal is remission – there is no cure. There’s a 40% chance I will relapse and I can see myself getting very scared every time I get a cold.

Being haunted by an illness is nothing new to me though. I had depression when I was a teenager, so every time I felt a bit blue I was scared it was back again. It came back in 2004 and again in 2007. I also have experience with a disease that lurks invisibly: polycyclic ovarian syndrome [PCOS].

I’m very fortunate in that my local hospital is a teaching hospital and held in very high regard so I really am getting the best possible care. People come from all over the UK to come to my hospital that’s 10 minutes down the road. I’m also very lucky in that my kidneys have thus far been unaffected.

I’m coping with all of this better because I finally feel that my anxiety is under control. The antidepressants are doing what they’re supposed to. My current plan is to keep on with the beta-blockers until I see my GP on the 28th. Then I’ll discuss with him the possibility of reducing or stopping them. It used to be that I could feel the beta-blocker wearing off. My pulse would start going all hard and fast and I’d feel all stressed etc. I’d try deep breathing or stretches and nothing would help. Now though, I don’t feel the drug wearing off and if my pulse does speed up I can take a few deep breathes and it calms down. Bliss.

When the background morphine pills were upped to 45mg twice a day I was supposed to be able to reduce the amount of liquid I had to have. This hasn’t been the case – I was still having 10ml every three hours. So on yesterday I had Weasel call the doctor and I’m now on 60mg twice a day. I’ve felt so much better today, I’ve managed to go almost 3.5 hours between one dose and another. I’m going to see about doing 3:15 overnight tonight and see how I feel tomorrow.

Friday is my next dose of cyclophosphamide – my new treatment replacing the methotrexate. The whole process will take 4-5 hours. They start with a blood test then we have to wait for the results before they can proceed. Then there are anti-nausea drugs and this drug… it means a lot of sitting around. Thankfully Weasel is able to go with me. We’ll take books, MP3 players, the DS and hopefully the time will fly by. I’m trying not to be nervous about it.

Weasel has made a small change that has knocked into every aspect of our lives and has made me fall more in love with her than ever before. I cannot believe that there’s still room in my heart for me to fall in love with her more.

The change? She has started coming to bed with me around 11pm.

I fall asleep quicker, I worry less, I don’t wonder where she is or what she’s doing [i.e. falling asleep in her computer chair and hurting her neck]. The sleep is more satisfying because she’s a comforting, warm and consistent presence by my side.

In the morning she gets up with her alarm and does productive things like the dishes. Her eyes aren’t blood shot, she’s singing more, laughing more. Working better at work. She has more fun with the fun things and feels better about the responsibilities because they’re getting done and she’s doing them well.

I’m so proud of her for making this change. I’m so happy seeing the effects as they roll through our lives. I’m so excited to see where this takes her now that she’s living in the moment.

Remember a few weeks ago I was happy because I’d finally upgraded WordPress? A week after that they released another update. My version was then new enough that it kept telling me that my version was out of date. So I finally upgraded today. Unfortunately, I fucked it up a bit and ended up spending half an hour trying various things. It was a stupid mistake and it wouldn’t have happened if I’d been paying proper attention. Thankfully I back everything up so it wasn’t a big deal.

I haven’t been back to Budgens since I went the other week. I actually felt really tired over the weekend. I suspect I was running on adrenaline last week with all the injections and stress. So I’ve been taking it easy and trying to do what I can when I can and not beating myself up over anything.

I’ve e-mailed E today to re-issue my telephone/visit invitation. We’ll see if she responds.

Re: the last title ‘Do not be concerned’. The lift in the hospital had the usual in-case-of-emergency/power loss sign up and the first line in bold caps was ‘do not be concerned’. This amused us for some reason, me because it is so very British and I love it when they do that. Additionally, there were signs all over titled ‘Fire Action’ – the action to take in case of a fire obviously, but I immediately thought more along the lines of superpowers. I took Fergus to every injection because he totally makes hospitals less scary. So I’d aim Fergus at Weasel and say ‘FIRE ACTION!’ and she’s mock scream and cower. Made every walk in and out of the clinic an adventure.

Weasel and I have made the decision to cancel our gym memberships. We froze the memberships back in September, so instead of £99 per month it was £20. But when one income goes and there’s no visible back-to-the-gym moment on the horizon we decided that those £20 could be better used on things like food. It has sort of made the recovery road that much more real to me. There is no end in sight, I have to wait and see what happens with the new treatment and then it’ll take me at least two months to get re-established in my work routine. Then I’ll want to get my home routine back, then my counselling coursework. I think before we re-new the gym we’ll look into setting up something at home by buying a rower, a pedometer and some weights. I have a bike already and overall it’ll probably work out cheaper and Weasel will be more likely to exercise too.

The morphine every three hours has meant that I can function again, and being without constant pain has been really awesome.

I’ll end with some amusement… Weasel has stomach issues which means that she sleeps better at an angle. With all my head crap I’ve had to join her. I used to call her five pillow pile her mountain, mine is now bigger with seven pillows and my duvet. So here is our sleeping mountain with Fergus playing me on the left and Corrin playing Weasel on the right.

And to give you an idea of how tall my pillows are…