There But For The Grace...

Next Door has a daughter the same age as me. After I got my epilepsy diagnosis her Mum told us she had started having seizures - lots of them. She started jumping through the same hoops I had to, but the seizures were so frequent and so severe that she wound up in hospital in a coma for a few days. Yesterday they got the news that she has a large mass on her brain, although they don't know what kind yet or what kind of treatment they'll be attempting.

Remember when I was saying it could be worse? This is the worse. This is why there was a part of me in all that morass of upset about the diagnosis that was painfully glad of the reprieve.

Today I took my tablets and swallowed them gratefully.

Progress Update

I'm coming to a close on my therapy. Just three more sessions left. My therapist is very happy with my progress so far and I have to admit I am too. I'm no longer subconsciously afraid of leaving the house. I'm going out four or five times a week, at least to Asdas. I'm working on relying less on my coping mechanisms (I had developed a whole selection to allow me to shut myself off within my own head at need). I'm stuttering less, although it becomes really obvious when I'm stressed still, or faced with a sudden confrontation. My memory lapses are still continuing, although if I can stay calm I can sometimes work around them. And between a super-comfy recliner chair we got for me before Christmas, and my new mobile smartphone (with internet! and Japanese apps! and all sorts!!!) I'm spending a lot more time downstairs with the family too. This progress has all been marked by increased shows of trust from the family (which I don't think they realise they're doing) like being trusted on my own with Niece3, or being trusted to go pick up my lil sis when she takes a funny turn.

In six weeks, when I have my last therapy appointment, I'll be relying more than ever on the supporting framework of friends and family that I've been working on coming back into touch with.

RAK3 went off successfully. Technically I'd probably only count it half a RAK since I was selling a spinning wheel to a student in London who wanted very badly to progress from spindle to wheel but had a very limited budget. I had taken in an abused Traddy in early December and fixed it up beautifully. I sold it to her for about half what it would have fetched on ebay. That was the RAK part. I hope she gets a lot of joy from it - I know mine has brought me a whole new chapter of life!

My epilepsy meds are reaching their final dose level. They seem to be working okay. I'm still getting shakes, very very occasional absences, and a single small seizure, but the heavy twitches/jerks have gone, there's been no more big seizures, and the absences are much less frequent.

So all-in-all I think it's been a rather good sequence of improvements.  

Dealing with Getting Better

It's been a little over a month since my last post. Since then I've had several incremental increases in my epilepsy meds, received my bus pass, and had my ATOS assessment. I also got myself a bright lime green trolley bag (as in, what grannies use to go shopping) which has been a lifesaver.

Pros

• I made it to my ATOS appointment without totally bailing. While this was due in no small part to lil-sis agreeing to accompany me, I'm still proud of myself for going. 
• I've been using my bus pass and trying to go out of the house as many days a week as I'm up to. Often this is just to Asdas (which is where the trolley bag comes in so very handy) but it's still getting out of the house. 
• I've been over to Edinburgh three times. The first time, just before I received my bus pass, was to the January spinning guild meeting. Bro-in-law drove me over with the for-sale Traddy in the back and me a nervous wreck. I made it through okay without too much stress but on the way home after I completely ran out of spoons and ended up bailing on dinner with big-sis and bro-in-law. 
• The second time was after I'd received my pass. I went over to the Edinburgh museum with lil-sis and Niece3. We saw the Vikings exhibit (really good btw!) and although I ran out of spoons a couple of times, I had my new thermos filled with tea and I could just sit and have a cuppa for a bit. Explained to lil-sis what was up and it all worked out fine. We had a good time and then came home. 
• The third time I went to the February Guild meeting on my own. I dealt with the buses over there and back by myself. I found the venue with only a little panic. I remembered the faces (and some names) of people I'd talked to the previous month. I interacted well. Then I went back into the City Centre and on a whim joined the Edinburgh City Library. I briefly checked out the new Manga Mania shop. And then I came home. 

Cons

• At the ATOS assessment I was a nervous wreck. My memory completely failed and lil-sis had to help me answer some of the most basic questions. My stutter became quite pronounced and I was shaking so hard I had difficulty even holding the cup of hot chocolate from my thermos. My lack of spoons afterwards was so bad that on the last bit of going home lil-sis had to take my bags. If I'd been alone just for that bit (let alone any of the rest of it) I probably would have sat down by the side of the road, called for a taxi to take me the last 10 minutes of walking time, and cried the whole way. 
• I got a new mobile (an HTC Desire C). While this has been a very good thing by itself, I have become completely dependent on it for mp3, books, internet, even movies - all the things I'd been using as crutches for coping with the world. I'm afraid of the battery dying and I'm spending an alarming amount of time contemplating additional power supplies for my new God. 
• I've almost stopped crocheting and spinning, at least compared to my usual enthusiasm. I just don't seem to have the energy for it. Due in great part to....
• After the ATOS assessment, all three trips to Edinburgh, and a few other excursions as well, I was so drained of spoons that I was pretty much a lifeless zombie for the next 2-3 days. I don't even remember much about those days, just that Mum had to keep reminding me to eat, and had to ask if I'd taken my meds. This lifelessness doesn't seem to show any signs of going away, even though Psych said it was a process of building up my immunity to going out again. 

That's pretty much it for now. Beth is still an adorable fluffball and Pyro is still my darling baby girl. 

Official

I officially have Adult Onset Epilepsy.

How do I feel about this? I suppose I'm glad it's not any of the other things that could have been causing my symptoms. I think I'm adjusting so easily because so much of my life has already been spent dealing with chronic conditions, and because my siblings cope with it too. It helps that so many people have been supportive, and that I have the silver lining of that free bus pass to hold on to.

But mostly it sucks. I hate that I have yet another thing wrong with me. I hate that I'm so vulnerable now to my own body's idiosyncrasies. I hate that I have to take more tablets every day "for my own good". And I hate how accepting I am of it, as an admittance of how trained and wired my mind has become to Life screwing me over yet again.

Life that was already kinda fuzzy around the edges from the sleepiness caused by my antidepressants has been made worse by my antiepileptics. I'm back to that state I was in over the summer, having to sleep late and take naps in order to remain coherent while awake.

The good things that have happened have all been based around my fibre-addiction. I finished my Rusalka Cowl, and it's wonderfully warm. I went to the p/Hop in Glasgow and - asides from coming home with a smashing haul of yarn - I got to thus spend time with Shae and Lori (and meet the amazing Kia the Ocecat). Fibre-y parcels have been arriving regularly, as Secret Santas and Christmas ordering (I've been shopping on behalf of my family this year!) have been delivered. And I've been introduced to Livestream and Blogtalkradio through Namaste Farms - two venues of amazingly interactive learning.

In other news I'm jumping through the hoops of blood tests again to see how I'm doing one year on from being put on iron tablets. And I'll be getting new spectacles as of next week.

Icky, Grotty, Tired

This morning, the biggest fit I've had so far.

This afternoon, getting to meet my big bro's current partner while struggling with stuffiness.

This evening, full blown cold.

I am utterly exhausted. Please someone bring me new batteries.

Pretty waves on the Rusalka Cowl

In other news, I'm almost finished my Rusalka Cowl, and I spun a ginormous skein of yarn on the new CS2.

Remember, that bobbin holds a kilo!

A massive 510g skein!

 Now I'm going to suck some Strepsils and drink some warm tea.

Country Spinner Mark 2 Update

My CS2 and accompanying fluff arrived on Tuesday. I spent Tuesday-Thursday sanding and Friday-Sunday (this evening) waxing. And...

I FINALLY FINISHED WAXING IT!

That is, the first coat.

I’m so tired, and tomorrow I have the dentists AND an MRI. :-( Since it arrived on Tuesday all I’ve done in my free time is work on the wheel. I have to keep reminding myself that the effort I’m expending now will be worth it, and comparing the part I’m working on with my Traddy so that I think “Yup, still prefer the wax finish over the oil.”

I’ll take tomorrow off from the wheel. I’ll have my crochet with me for travelling and waiting-rooms. And when I get home I’ll just watch telly or read for a bit.

The ginormous bobbin is being left until after the wheel is assembled so I can have photos showing how the wax changes the raw wood, and will probably just get the one coat of beeswax for now.

The good news is that I can now judge that I’ll have enough beeswax in the tin to do the three coats I originally wanted. Whether or not I’ll have the spoons to do that remains to be seen.

Have some photos...

End of Autumn

There is a bush in the garden, the name of which I can never remember. It has clusters of tiny white flowers and small pointed leaves. At the start of autumn its leaves slowly turn gold. Suddenly, you'll notice that the top of the shrub has turned red. And then one day, usually around Samhain, you go outside and almost all the leaves will have dropped off overnight. All my life, that has signalled the end of any kind of warm weather. Other trees and plants might continue to boast amber hues, but the colour seems half-lie after that. This morning the leaves had dropped, and Mum and I spent what few daylight hours there were trying to get the last of the plants in. They should have been long-since in, and the bulbs besides, but the wet, miserable weather kept up from the garden. My big task today was getting the two clematis in. Mum physically lacks the strength and balance to weild a spade now, and the clay claggy soil was waterlogged. The spots we wanted them in were long-term "lawn" spots too. The sum meaning that I had to dig a much bigger hole than you'd imagine a clematis would need, and in the worst conditions. However, they now have a chance of surviving even our scheduled bitter winter.

Tomorrow I finally have a psychology appointment. I asked for help originally in December/January, and was assessed in March. I finally caved to the antidepressants in May. And at the start of November I'll hopefully get the help I need.

Since October was my birthday month, Ravelry has been amazing! At the start of the month I recieved two patterns, one for the Rusalka Cowl, which I'm half-way through crocheting in a lovely warm aran wool in cream, and one for the Belinda Vest. I started chatting to the Raveler who sent the vest pattern and when she discovered I had yet to obtain an aran weight yarn for the pattern, she offered me one she hadn't a use for. It arrived a week before my birthday - a lovely hazy soft purple - along with a birthday card! On the actual day of my birthday, asides from being overwhelmed by good wishes, I recieved an entire e-book of patterns containing two of the shawl patterns in the top of my wish list! The other two patterns (also for shawls) are beautiful too. Once my vest and cowl are finished for me to snuggle down in this winter, I shall have fun selecting which lace yarns from my stash will be lucky enough to be worked up!

On my birthday I had a lovely quiet day. All the exciting stuff (my usual trip through to Glasgow) was conducted the previous week so that I might attend the Glasgow School of Yarn. So it was nice to know that I had nothing to do. No laundry or chores, no appointments, no babysitting. Mum had to go out and I sat crocheting with the telly for a bit and then the critters and I went for a lovely nap in the living room. Mum came back with a birthday bouquet of yellow roses which have delighted me every time I catch sight of their sunny fanfare. We had fish-n-chips for tea and instead of a cake we had a huge strawberry tart each. I made Mum sing the birthday song. It was a good day for turning 28.

More twitches today. Including a rather uncomfortable total upper torso twitch. Mum was there for that one and reminded me what my sisters said - not to fight it. I made myself relax and it soon passed but my neck is a bit painful from where I was resisting at first. :-(

And my computer's wifi is still down, hence the absense of any photos from the last few weeks. Hopefully will get it up and running again before the new wheel arrives!

Country Spinner Mark 2!

That's my order in, all official and proper! It's not the most expensive thing I've ever bought, but it came quite close! I will be one of the first people in the UK to own the Mark 2 - so very exciting on several levels.

I have to wait a couple of weeks for delivery as the distributor won't get the wheel to my supplier till the end of the week and it'll be about Wednesday next week that it leaves them. When it arrives though it'll have company! 500g of assorted dyed merino, 300g of dyed alpaca, a new click bearing for Ai my Traddy, and a packet of needle-felting needles! And I'll be getting the lot of it for LESS than the advertised price of the Country Spinner on its own! Can't beat a Fifer for tracking down a bargain.

More "twitches" today but not a full seizure. So that's good.

Tomorrow is my birthday. I've already recieved a fair few of my presents and cards, but I'm still looking forward to cake at dinnertime. Yes, I'm 28 and I still get birthday cake. I intend to have birthday cake even when I'm 120 and they have to blend it and give me a straw to eat it. :P

Epilepsy and Spinning Wheels

As some of you know, I've been in the process of being tested for epilepsy. I've had a number of absenses (being termed "episodes" by the doctors until it's official) which we're trying to keep track of and some slight judderyness when tired, but so far that was it.

On the other side of the story I’ve been toying with the idea of getting an Ashford Country Spinner to compliment my Ashford Traddy… well… pretty much ever since the announcement from Ashford that they were going to release the Mark 2. Then I got my birthday monies early and decided to take the plunge and start the ordering process. But I was still feeling a little guilty about spending so much on something I just “wanted” rather than “needed”.

However, today I had my first “definate” seizure. :-( I’ve been having absenses for a while now but I had never noticed anything seizure-like. Today I had one in the kitchen while my younger sister (also epileptic) was visiting. My whole body jerked and the cup I was holding went flying. The family made me sit down and I promptly burst into tears. Lil’sis hugged me (which is INCREDIBLELY unusual - she’s not at ALL huggy) and later (after I’d calmed down) informed me that my arms continued to twitch and jerk the whole time I was crying. Between the seizure and the emotional outbreak I spent the rest of today exhausted.

I also stopped feeling the least bit guilty about blowing that cash on a second wheel.

So properly saying “Yay!” now, and on Monday when the shop I want to order from opens again I’ll complete the order process. I won’t get it for my birthday on Tuesday, but at least I’ll know it’s on its way.