The Chair Downstairs

In Beth's Mum and Dad's basement, the is a chair. It an old style recliner, solid, no modern comfort gubbins. It is incredibly comfortable, and promotes deep sleep instantly. I know we went to Champaign; I know we had Steak and Shake ( if you get the chance, go there), I know we came back. The last thing I remember is going to the basement, and putting my clothes in the dryer.

The next thing I remember is waking up, convinced that I'd just heard a discussion    where Brian May explained that Queen and The Smiths, came from the same punk background. I'm sure I didn't hear that anywhere.

Clothes ready, chair in repose. Left the basement with my dry clothes, knowing that the chair would be rocking itself after  I left....

Weathered.

What the fuck? Wednesday will be sunny, or, 39 degrees and cloudy.
 "The sun is trying to make an appearance."
"Its not trying hard enough. Like your predictive powers, the weather has decided to be really shitty."
"There's no need for that…."
Quite right. There is no need for a badly dressed, terrible guesser, who would be better off spending their time practicing their serious, "Get to the basement!" face, to prepare for their dream day, when the tornado sirens go off, and its not aWednesday test. Where's my jumper? Brr….

Facetimed.

I just spent an hour on FaceTime with some really good friends of mine, Brody and Carolyn, who I saw in Broadstairs when I was back in England. It was great, and being FaceTime? Free. I don't know how that works. Skype is the same, you can do transatlantic video conferencing for nothing, though there may be some huge psychic cost, somewhere down the line.
Ankle still shit, but my day has improved an awful lot. Hair cut. Tomorrow? It has to be tomorrow. Unless its today.

Recycl...

Today is the day, that the recycling needs to go out. I need to put the full bin in the alley, where it will be picked up. However, I know I can't walk down the garden to do it. My ankle is kicking again, because I hauled out a heavy bag of rubbish two days ago. Also, the garden is laden with traps, which Abbey has been digging on and off for months. The last time I said, "Fuck it, I'll do it anyway", I ended up in a heap on the garden floor, surrounded by rubbish bags I'd launched around me. So, no recycle for you.
I would like a haircut though. I've been meaning to get one for weeks. I was going to say that my sprained, crippy ankle stopped me, and it did a bit, but, I really couldn't be bothered to sort anything out. I'm off to Illinois for a week, tomorrow or Thursday, so my tine is up, and I need to get it done. I realize this may look like bitching about nothing, but the inability to do what you want, because you're body isn't in sync right now, its enormously irritating.
I did read about the guy who's paralysis was cured, by using stem cells taken from his nose. The stem cells in the nose are the only ones which keep repairing themselves as you grow older. Hmm. If it could repair the myelin sheath? That would be an interesting fix for MS. And they still can't cure the common cold.

Change?

Today is a little cold. According to the Farmer's Almanac winter is going to be a little later than we expect. but dire. Shit. I got to enjoy summer this year, having missed it, whacked out on anti-neuralgic nerve pain drugs last year. I was just getting into it.
Now is the time I always think we should live somewhere more temperate. I know everyone else loves the seasons, I fucking hate them. I know when winter kicks in, thats pretty much it for me until spring. When spring comes things will get odd, as the season changes, then it will settle down for a while. Hoorah?
Sod that, what I'm actually pissed off about  is that if the blood test I just did comes up badly, I'll have to stop doing the infusions, and transfer to tablets, which may or may not help. This is very different to the lead up to starting the infusions, when I was so scared of the death it would probably cause, if it went wrong. I really wanted to be on the tablets back then.
Funny thing is, having risked my life 27 times doing the drug, I've grown quite fond of it. The infusion suite is great, everybody's cool, and the Tysabri does its job. What I don't want, is to spend winter glaring at a bottle of pills I don't trust.
 Having said that, it does open my time up, as  I don't have to be in that room once a month, without fail. I can plan my holidays, without worrying about when I can leave, or when I have to come back. And the pills might work, when I have to transfer to them. Much better. As you were.

Hell Oasis

I actually thought of the title of this blog a few days ago. I hadn't written anything all week, and this was the first thing I thought  of. Hell Oasis. I like it, its a bit odd. Have I been in hell for a week? No. My infusion ran out, and I  slept through most of it. Left the house a bit, where I always had a good time, including Friday in the infusion suite, where I saw blood spurt out of my arm as the nurse was trying to get a line in.
"Which vein did you hit?" I pondered, as the remarkably crimson red fled. Line fixed, a sample was taken, as my odds of total destruction are adjusted every three months. My dangerous drug of choice was then piped in for an hour, while I napped.
Drug in, I then started the hour of,
 "You're not going to drop dead, right?"
Went to the basket picked out some chocolate, got a coffee and sat down. Chatted to the women in the chair next to mine, who said,
"I knew it was MS, you're not supposed to go blind in one eye forever over night, are you?"
"I don't think so", was my somewhat worried response.
 Chipolte for dinner, which I really like, and I had a very relaxing evening, considering. Hell Oasis? Thats about right.

Balance.

I knew something was up today. It took a while to kick in. When it did, my sense of balance was taken. I was walking backward, and realized I wasn't going to stop. Its not a sensation like tripping, falling or making a mistake that you try to correct as best you can. Its the moment when I realize that something has changed, which I can do nothing about, except try and rest it out, to see if it fucks off. It hasn't fucked off, but its lost a lot of its vim, and is currently sulking, because I won't let it out to play.

Bestest.

This afternoon, out of the house, Easy Street this time, with Andy and his lovely bride to be, Tracy. Andy asked me to be his best man a few months ago, and today was the first time I've met Tracy. She's really cool, though hearing the best man was English (great, her mum is English, she used to live in England) and, a stand up (Oh), I kept telling her that she has no need to worry, I know the difference between the English best man's speech, a kick in for the groom, and the American version, lovely, where the only problem I have is to make sure I say just how amazing everyone looks!
This wedding is going to be great, I can't wait. Well, i can wait until next October, which is when it is.

Full Odd.

Up. Toast,  crunchy cookie butter, coffee, and a banana. Managed to get the rubbish out, with only a remote warning twang from my ankle. did get out of the house yesterday. Wandered down to Thurman. i was sitting trying to decide whether to go to Easy street or Thurman, when wo people walked up.
"Where can I get a coffee?" said the nice lady, as her partner, with a well swept grey ponytail, stood stoically beside her.
"I'd say Easy st. Thurman is great, but you probably can't get in, and if you can, it will be packed."
"How far is that?" said the languid Peter Fonda look a like.
"Its just there," I said, pointing.
"Cool."
I then found out the lady had just flown in from LA, where its 110 degrees, and that she had drunk all the beer they'd bought, in the car on the way to the airport. They are staying at Ronald Macdonald house. Oh. Here to help, got it. They then left to coffee up in Easy Street.
Well, that makes that decision easier, Thurman it is. Not because they were unpleasant, i kind of liked them. What I didn't want to do was turn up at the place i'd sent the people I'd just met, forcing unnecessary pleasantness, edged with stalker odd. Too English?
 I then walked into Thurman, said I wanted a take away, and ended up in the take away shop next door. This may have been a good move. I know all those people, and drinking was certain. Bought my huge take out home, and sat looking at it for 10 minutes mumbling,
"What have I done?"
Turns out I'd done well, it was great! Then I watched the first episode of Stalker, and completely freaked myself out. And I was really full.

Home Alone Day 4.

Yesterday? Fucked into dust. Today? Fucked-ish. I'm playing the MS lottery, where you never know what ticket you are going to pull, if you can pull the ticket at all. I'd say my ankle is a lot better, but I'd say it quietly, as I don't want to jinx the recovery. So today, leave the house. For fucks sake leave the house. As I wrote before, not so much lazy as trapped. Trapped? Get to fuck, I shall be proudly limping down the road, at some point, today…?

Home Alone Day 3.

Beth and Abbey are still down in Illinois. The house is still in once piece, tidy even. I had a great evening with my mate Stewart last night. We spent the evening eating  brie, crackers and grapes, drinking, and catching him up on the episodes of Doctor Who he had missed.

 I woke up a little late today, 9:30, as I had no Abbey alarm clock to get me out of bed by 6. Puttered about,  and checked the weather, crap. Made coffee, had a nice breakfast and checked out what condition my ankle is now in. Not as bad as yesterday. Phoned England. My niece really likes the xylophone i got her for her birthday, cool. Ended up chatting to a really good friend of mine for nearly 2 hours, bless you Skype, where I think we sorted out  all the world's problems. Apparently, everyone has to just chill the fuck out. 

Price.

I've known for a long time that I cannot be bought. Is it because I'm such a moral sort? No. Is it that I'm hugely wealthy? No. its because no one can pay the price it would take. You would have to cure MS, and fix all the damage. Then, we could talk about anything you like. Other than that, if I'm not interested,? Jog on.

Monday Musing.

Beth went down to Illinois yesterday, leaving me on my own in the house until Thursday. I did what I always do when I get the house to myself, spend a couple of hours watching what I want on the TV, eat snacks, fall sleep, and then wake up, over-full, wondering when Beth and Abbey will be back. Thursday, got it.
I was going to write that I haven't  really seen anyone over the weeks since I got back,  with my manky ankle knackering me going out much. This isn't true, I have seen people since I got back. My issue is what it always is, MS means I live my life as a blip on the radar. When I'm around people, I always enjoy the company and have a good time. What I can't do, is be around consistently. I get wiped out all the time, lose weeks, months and last year, most of the year.
 I'm still around, and have fun when I can.
I'm finally getting better at dealing with my enforced stops, though not perfect. I still see time slip away, and do fuck all about it, except read , change the channels, or stream more radio from England. I am over feeling guilty for not doing what everyone else does. I felt lazy for years. I was wrong about that. Truth is, if I was well, I'd still be doing exactly what I wanted,  and getting paid performing as much as I could. i was never slightly interested in a proper job, which I know means I never got to build daily work relationships. No bad thing, as my tolerance for bullshit is nil, and I don't think I would have done too well.
Is that a rationale, for being really sick and unable to be normal? Probably. Fuck it, Up really early having coma'ed yesterday out. Coffee, a banana,  and Radio 6. Tunes!

Keening .

I was asleep. I was happy to be there. I don't remember the dream, but it felt like it was good, with no running whilst being chased involved. Then the keening started. Abbey had decided that if she was awake, I needed to be awake. I disagreed, and tried to settle back into whatever it was that she'd made me leave. I moved from the bed to the chair, reasoning that I was pitching some pyschological genius move, where the movement from up to down would cause immediate dog napping. No, it wouldn't. Keening continued. I got up and went downstairs reasoning,
"Well it must be nearly 6 am, right?"
It was in the same day, but some hours out. I now have a pooch who is wandering about, wondering whats happened to breakfast, confused, but with no keening. I can't see the win on either side for this one.

Fun Food Coma/ International Ankle Fuck Buggery.

The brisket I had for lunch was amazing. They have it every wednesday at Brownbag. Like any really good meal, it causes near immediate food coma. Today, I welcomed the nap. My ankle is either re-buggered, or never really fixed itself, and has been sat waiting to fuck me up, whenever it got bored. Thanks very much. The news reports on Kim Jon Un's ankle are not helping, it looks awfully familiar. Bugger.

Full Circle.

Over a year ago I stood in my bathroom, watching my wedding ring think about bouncing off the grill, change its mind, and take the heating duct straight down to the basement. There it lived, with me looking at the heating duct grill I meant to replace, and sending my best wishes down to the basement. I knew that we were going to have to cut the duct work out to get at the ring. So there it lived.
Until this morning, when the duct work was stripped out, and the ring came in from the cold. I don't know what adventures the you've been on for the past year and a half, but I'm glad to have you back.