One of the side effects of methotrexate is a cough. It is worse when I lie down. I also end up with a headache from coughing so hard. I haven’t slept well because of it. Miserable. So I’m sending Weasel to talk with a pharmacist about what I can take. All the cough remedies we have here are for cold/flu symptoms and I’m so full of other drugs I don’t want to take things for symptoms I don’t have.

I wanted to send Weasel prepared so I wrote down all the medications I was taking. The beta blockers should be 50mg tablets and I take one a day as a slow release thing. Looking at the packaging today I realised they were only 25mg tablets. No wonder my heart is still pounding and I’m still shaky. So she’s taking the drug back with her and showing them that they got it wrong.

I had a blood test this morning so taxi came to collect me. Weasel hadn’t had time to get cash for me so we’d pooled all the coins we had. I think I had about £8, normally the trip comes in between £5 and £6 depending on traffic. I have taken to wearing my cycling air filter mask thingy whenever I go outside because I really really cannot afford to catch a cold or anything right now. Plus it warms up the air and protects me from unpleasant odours. The taxi driver asked about it and I said I was on medication that suppressed my immune system and I was being cautious. When we started off he took a wrong turn then a very squirrelly route to the doctors so when we were halfway there it was already £5.20. I fished my wallet out to see how much I had and he asked if I was okay and I said I might not have enough and that I hadn’t counted on the traffic and it was usually £6. When we got there the total was £7.20, I had enough and handed it over, he gave me back £1.20. So clearly my enfeebled state can be useful.

The plan for getting home was that I’d go to the rail station and use the cash machine then just get a taxi from the queue. Thankfully the cash machine was working and loads of people got to stare at me which I’m sure they enjoyed. The mask bothers people I think. Plus I walk like I’m 90 at the moment. Fun. It confirmed for me though that I really don’t care what people think. I got the cash and there were many, many people waiting for taxis at an empty queue so I fished out my mobile and called for one to collect me. I asked him to drop me of at the end of my street, my plan was to walk home. Walking to the station and then walking home is easily my 10-15 minutes. When I started walking the taxi guy asked if I was okay, which was nice. I said I needed the walk. I’m not used to taxi drivers being nice and I got two in one day.

It’ll be very nice when our account with them it set up and we can just pay once at the end of the month. Yesterday Weasel took a day of holiday and cleaned the house a bit, did some shopping and faxed our application for a taxi account.

I’ve been re-watching a lot of films we have on video now that I can use the headphones to hear. I’ve watched The Game, The Fugitive and Higher Learning so far. The latter I just finished and my god, I totally should have been watching it more. I recorded it because I knew Tori had some songs in it, I watched it after that and then it just sat on the shelf. I knew it was good, but I’d forgot how good.

Horatio’s Mum wrote me back. Now I have to formulate a reply.

Friends in the UK – do you love films? I have two vouchers to LoveFilm worth £50 each to give away. If you’re interested, drop me an e-mail ezekiel[at]periwinkleblue[dot]co[dot]uk with your address and I’ll send one along. Weasel and I have been with them for a year and the service and selection is excellent.

Remember how I said that it could take 12 weeks for me to feel better and I was only in week eight… well, I was re-reading my methotrexate book and it’s actually 12 weeks after reaching the best dose for your condition. I’ve only been on my best dose for four weeks. Today is the start of week four. This makes me feel a little blue.

I’m sleeping better these days, but I’m still incredibly shaky. I’ve developed a very uncomfortable cough. My nose is swollen again, I’m douching three times a day to try and comfort it. My teeth have also started aching again. I’ve had a few paracetamol [over the counter painkiller] and I’m really hoping that I don’t have to move onto something stronger.

I’m so scared that I’m getting worse and that I’ll have to be admitted to hospital again. Nurse called, the swab I had done of the ear gunk showed a bacterial infection – joy. So keeping on with ear drops until ENT appointment next Monday. It has sadly made me a little more deaf. I can still use the phone though and there isn’t a lot of pain so headphones are still an option.

I’ve started the Christmas cards, I’m having a hard time because my hands shake so much. I’m also not 100% sure what I want to say. I’ve gone with, “2007 has been a rough year for us health-wise and we’ve had some deaths in the family. We’re hoping 2008 will be better. Hope you’re enjoying this holiday season.” It’s probably the best I can hope for.

I took my nose stud out while I was having so many people looking up my nose* and all those endoscopies. Once I got out of hospital and the swelling was gone I tried to put it back in again, but it has healed over somewhat and I couldn’t push my stud through. The dilemma now is do I wait until I’m 100% better [including having the saddle repaired] and have it re-pierced, do I just leave it out forever or do I wait until the current swelling is gone then open the hole again myself.

*This actually kind of amused me. I’d go to my various hospital appointments, the first doctor would look up my nose, then they’d take me to another clinic or call a colleague over and they’d look in my nose too. I think sometimes I had 10 people look up my nose in a day.

My heart has calmed down a bit since I switched to the slow release beta blocker. They had me get a ECG just in case there was something wrong with my heart. Happily the results were normal, my heart was running a little fast, but it is healthy. It doesn’t pound so much so I feel more comfortable.

Weasel and I tried to put Christmas up over the weekend. We managed to get the tree up, but it is naked still. I have very little strength and so I just end up watching a lot of the time. I could probably hang the ornaments, but I can’t do the lights and they really need to go on first. I don’t think we’ll do anything beyond the tree and the stockings, it is just too much for us this year.

I found a journal from a woman who lives near my home town in Idaho. It has been so fun reading about her life and recognising things. It’s like when I read The Smoke Jumper by Nicholas Evans. It was neat reading about things I know about. I guess if you live somewhere like New York or London you get used to media referencing your city, but I come from a very small place so it is still novel.

I love showers. I love the steam, the sound of the water like rain, the quiet [no one bothers you when you're in the shower] and being clean is a joy in and of itself.

With my legs having deteriorated so much, I have a hard time standing for long, my legs wobble and I get shaky. So I only get to shower every other day [which is fine, I'm not moving much]. The problem is that I have to get in, wash as quick as I can and get out before I fall over. I don’t get to luxuriate.

Stairs have become increasingly difficult for me too. Thank god for banisters.

It occurred to me the other day that when I started treatment, they said it could take up to 12 weeks for me to feel better. I’m only in week eight. It is hard to be patient.

I have my appointments sorted finally. ENT on the 17th, vasculitis on the 20th. Blood tests on the 11th and 18th. Normally, I’d walk or cycle to all of these and it would be awesome. Sadly though since the walking is very hard and my legs are wobbly at best, we’ve been relying on taxis or on Stoat. I feel bad asking Stoat and only do it when I have to because it takes half an hour for him to get here, then however long it takes to get me where I need to be then drop me off and another half hour to get home again. On top of that there are petrol costs that we haven’t addressed. So it is easier to just get a taxi. Yesterday when Weasel was booking the taxi I suggested we get an account. We rarely have cash on hand and we’ve had to make so many special trips to get it. So we have the form coming in the post so we can register and save ourselves some hassle.

I also twigged that we have £100 per month earmarked to pay for Horatio visits and I haven’t seen him properly in months, so now I don’t feel so guilty about the taxis because they’re definitely less than £100 per month.

Last night with my heart a-racing and my ears a-leaking I just couldn’t sleep. I also knew I had to get up at 4am to win my Dad’s Christmas present on eBay so I was all anxious about that. I finally got up at 3:30 and like two ships passing in the night … I passed Weasel on her way to bed. I won the auction and the present is winging it’s way there now.

I decided I wanted to do Christmas cards so I could have a fun project to do while I’m sitting around being ill. I normally write a little half page or so telling how our year has been, but this year has been so crap I was unable to write anything. So I’ve decided to just hand write the lot of them. The problem is that I’m very shaky from lack of sleep, so my handwriting is a bit interesting at the moment.

If you visit regularly, you might have noticed that there have been some changes on the right hand side. Several of the journals I’ve been browsing lately have been a source of good ideas and inspiration. I repeatedly found myself heading to the about pages first then if the first few current entries appealed I started working through the archives. So to that end, I’ve extended and added a lot more information about me and I’ve got the separate archive page I’ve always wanted.

Stoat worked as a chef for 40-odd years. He makes amazing food. He has an idea for a website [which we all think is brilliant]. So I get to build it. I love building websites. So first thing I’m doing is trying to figure out what sort of sections we have then finding a WordPress theme I can tweak. This is my little ‘while I’m ill’ project. I need something fun that makes me feel useful.

I saw the doctor again today. My pulse just wouldn’t calm down. She’s changed the beta-blocker to a slow release one that I can take once per day so now I only take drugs once a day. This is awesome. I also have a ECG booked next week. She called the vasculitis people to find out where my appointment was too. They’re going to call us back. So now I’m waiting on both my hospital clinics. She also said that I will probably be out of work until the end of the month. So that’s three month. I actually felt relief, I’ve been trying to figure out how I can do it and now I don’t have to.

Financially speaking there are now knock-on effects, but thanks to the debt freedom Weasel and I achieved at the beginning of this year our savings will keep us safe until I’m better.

My hearing continues to improve, when I listen to music I can hear more of the layers. I can hear more creaks, clicks and thumps from the house and when I move. We won’t know how well it is for sure until I can get my ears cleaned and have the hearing test.

If you’ve been reading Debbie for long enough you’ll know that Horatio’s Mum does not like me. I’ve only met her in person three times. The first time I thought went well. The second time she didn’t acknowledge me at all and we just stayed in Horatio’s room. The third time when she found out I was in the house she refused to come in in the house just because I was there. After Horatio moved out she said she wanted to get to know me and I should e-mail her. I thought about it and told Horatio that I needed her to apologise for her behaviour and contact me first since she was the one causing the problem. When he visited on Sunday he brought a little bag of lovely organic bee based bath stuff from her. She sent it to me as a get well gift.

I’ve sent her an e-mail to say thank you. We’ll see what happens next.

Last night when I went to bed my heart was doing it’s really-strong-but-not-fast beat thing it has been doing since the hospital. Sometime over the next few hours my heart rate increased and I felt like I’d missed a dose of the beta blockers [I hadn't]. I’ve been trying to relax and not let it get to me, but right now my pulse is about 136 which is much much much much much too high. I’ve taken my second beta blocker now to see if it’ll help. I’m early though, I shouldn’t have it till 8 tonight.

I think I’ve caught a cold as well so today has been really rough. My left ear is discharging now too. They’ve both been popping and gurgling all day. My hearing is better, but I’ve had to put cotton balls in my ears because the discharge was too much.

Plus Weasel had a meeting so I was on my own today. I was nervous about missing the ENT so I had the phone with me all day. I still haven’t heard from them, so I guess we’re still waiting. She’s away again tomorrow and I don’t know if I can handle it. I guess this is when having friends locally might be useful. But I suspect they’d have jobs and I’d feel awful making someone waste a day keeping me from panicking.

Yesterday I managed to get my Christmas list sorted so people can start shopping. I’ve got a few presents sorted already for my Mom, sister and Mal. I initially thought I wouldn’t be up to Christmas, but it turns out that it is a great distraction and a source of joy so I’m running with it.

Many many many moons ago, Weasel told me about the Keo Project. Basically they’re making a time capsule and sending it into space for 50,000 years. Everyone on earth has the chance to put a message in. I started writing something at the time, but I wasn’t happy with it so I sat on it. I found the file while tidying up all these files and it wasn’t as awful as I remembered. So here’s what I contributed:

Remember that you are the only person who controls you. Other people cannot make you feel or do anything, you choose how you react. If you don’t want to feel what you’re feeling, look to why it is there, figure it out and find another path.

Everyone has their own strengths. Just because you’re amazing at something or something makes sense to you doesn’t mean it does to everyone else. Try to see it from the other side. Always seek balance. Identify your weaknesses only so you can pull them up in line with your strengths.

Embrace change and when you can, create your own catalysts for it. Don’t wait until the New Year to turn over that new leaf, do it as soon as you can.

Relationships change as the people in them grow, so let your loved ones grow and let their happiness add to yours.

The human body is remarkably resilient, don’t fill it with unnecessary fuel like too much fat, sugar and salt. Don’t take medicines unless you really need them. Drink more water than you think you should.

Take compliments at face value and hold on to them – and always say thank you!

Keep learning – knowledge is limitless.

Horatio’s visit was a success. He got here an hour earlier than expected – happily traffic on Sunday mornings is minimal. We got to see and touch each other. He took me for a walk. Weasel stayed with us the whole time – what a rare and wonderful treat for me to be with them at the same time. We watched Simpsons and Planet Earth [which continues to be amazing - thank you again Kharn!!!]. We played a nice game of Settlers & Seafarers. We chatted loads and Horatio and Weasel got to geek at each other which they both enjoyed. And my god we had Domino’s. They have a deal where you can have three small pizza for £5 each, so we got six. It was soooooo good. I adore Domino’s and it has been ages since I had it. They got the Christmas boxes out of the loft for me, so I’m definitely going to have some Christmas cheer this year.

Sleep was easier last night, I think I had three chunks of two hours each. I’m still really shaky and anxious, but I think I feel better today. My walk today was the best since I did the huge 15-minute loop. I managed about 13 minutes and still felt pretty good. I’ve also done some dishes and had a shower. I’m still really wobbly, but I’m getting better.

I saw the GP today. I now have a blood test scheduled for tomorrow. He called the ENT and told them that they needed to see me this week as the infection was possibly still raging [he couldn't tell through all the gunk, so he's taken a swab so they'll have the results]. Hopefully they’ll call me tomorrow with an appointment. Thank god. I’ve got more methotrexate and ear drops. No more antibiotics – YAY!!!! I am feeling such incredible relief that I’ll be monitored better now. I take the last dose of the steroids tonight. This is the last of the daily drugs. I have the weekly ones now and that’s it. Bliss.

Ralph from work called to talk to Weasel and I happened to answer and I ended up shaking so badly I had to hang up. I had Weasel call him back after that. I just feel so guilty about not working – it has been over two months since I was in, but I’m just such a mess right now.

The pr0n clean-up project has taken on a new level. I decided to treat it like my wardrobe. If I have two shirts and I know that if given the choice I will always chose shirt A then there is no point in keeping shirt B. So with that new strict line I expect I’ll be getting rid of the majority and simply keeping my redhead collection [which is sooo nice].

While I was browsing for journals I found a quote that spoke to me…

It is a nice idea of hope and it has actually been rather comforting.

Oh! And today is my Mom’s 52nd birthday. I bought her some flowers as a surprise. She’s had a really crappy year too. When my dog died, her’s did too. When my grandpa died it was her Dad. When I got seriously ill half a world away, her daughter got seriously ill half a world away. I’m hoping they help her feel a little better and a lot loved.