Thursday 23 February 2012

Wish I was a weeble

I've been thinking a lot about the Fat Quarterly Retreat.  Naturally I'm getting excited about it, as I believe most of us Brit Bee's are, however I have also been thinking about me, and my oh so freakin boring "condition"...  These days, I don't do a great deal of letting loose and having a laugh - I tend to try and keep myself a little distanced.  Its not that I don't want to have a laugh, I just don't want to fall over...  My cataplexy seems pretty firmly rooted these days, and a laugh, or being cheeky, (or the other end of the scale and getting upset or annoyed) causes anything from losing my vision, my facial muscles slackening (making me look a right twat) to the whole collapse in a heap fall over.  I really don't want to be doin ANY of that at the FQ retreat.  But I DO want to have a good laugh there, and I am rather cheeky - some of you know too well - so I'd like to be able to be myself.

Years ago when I was going through the motions of trying every single medication available to me I did try something that helped with the Cataplexy.  From what I remembered, I took this pill and for the first week or so my narcolepsy would go a bit mental, but then it would calm down, back to normal, but without the Cataplexy.  Now I'd stopped taking it because after 6 months or so of continually upping the dosage it just wasn't having much effect any more.   However, FQ retreat is 3 months away...
On Friday I went to the docs and got the meds.

On Saturday afternoon I started to feel a bit queasy, and I couldn't really face eating anything other than a bit of toast.  Saturday evening, I started to get hot flushes...  My temperature rocketed and I still felt queasy, so I went to bed.
Sunday morning I woke up feeling terrible.  I was sick, I had a nasty trip to the toilet..  Then I looked in the mirror, and I had the freakiest eyes...  Massive, enormous black pupils.  I shut my eyes and opened them again.  Still massive.  I shone a light in my eyes.  Still massive.  Hardly any Iris at all, it looked so creepy.
I took my freaky dilated pupils and curled up on the sofa under a quilt for the day.
All day and night I would get waves of nausea, I couldnt eat, pins and needles all over my body, random uncontrollable shaking.  I kept yawning all the time, yawning like I was trying to split my head open Muppet style...
Monday was just the same, and not having eaten I was really feeble and shaky too.  My heart would suddenly start racing.  My head was hurting.  I gave in and called the doc.  Every last thing I was feeling was just a "common" side effect for the Cataplexy pills.  Common or not, the doc said I should stop immediately.  As much as I wanted to get rid of the cataplexy for my trip away, I had to agree, I couldn't cope with all that.

Its now 48 hrs since I took the pills and I'm starting to feel much better.  Cant help but feel a bit gutted though, my stand by "I can always take the cataplexy pills again" is no more.  I'm always going wobble and nothings going to stop me falling over...  Sucks.

So that was my weekend.   Fortunately I had time on Friday to make this....

Natural Linen with rainbow scraps band and hand stitching.  Approx 10 x 11", wide flat bottom, pocket inside.


And time this evening to make this...

Grey Linen with rainbow scrappy blocks and rainbow band, 9" square approx, shallow bottom, divider section inside. 

One of which will go to my partner in the Mouthy Stitches Zippy pouch swap.
Now to get caught up with my For the Love of Solids swap.....  oh help!!


ps  If anyone gets muddled up with their bits for the Stained QAL blocks, I've uploaded another "helpful diagram" with each block and the sizes of  its component parts.   Click here to go to it.

40 comments:

  1. Ok, so I am reasonably strong and a good catch, I can be near when no one else is about, I expect others will be handy too, we will keep you laughing but we will not let you fall.

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  2. that sucks, but don't worry - I'll catch you :-D

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  3. I'd love to say......you will be amongst friends & we will help you.....but as I'm not gonna be there I can't :-(
    But I Can Say........you will be amongst friends & They will help you.....because I know they will :-) xxx

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  4. oh friend. i am so sorry! damn pills! i am glad you stopped taking them though, they might have killed you, you know. if i were going to the retreat i would hold you up! xoxo

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  5. LOVE those pouches also! it seems you have an extra... hint hint ;)

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  6. You'll be so surrounded by good friends in June there'll be no chance of you hitting the floor! Thanks so much for your openess and honesty too! I love that you are real with us about this. I can't imagine how disappointing it is living with this, but please try not to fret about June. You have your own personal minder for the journey and an insane amount of insane friends to get you through the retreat!!
    I'm just thinking, those over-dilated pupils would have made for a brill portrait for Jennie!!! Jxo

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  7. I'm not going to be there either, but I think you're going to have enough very nice people to be there for you! I think you'll be doing enough laughing that by the end of the weekend, they'll be experts at catching you!

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  8. Oh Sarah, what a foul weekend for you - I hope you can ditch the worrying and look forward to June. I can't be there but I just know there is a clutch of virtual friends that will be there for you.x

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  9. That does sound scary, such side effects! Hope you will find a way to be able to go to the FQ Retreat and feel confident about it!
    Love your pouches! Even with inside pockets.
    Thank you for the helpful diagrams for the SQAL. Now I no longer need to check it out!

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  10. Oh arse to the meds, hate side effects :o( Still, friends are all there to catch you when you fall, and we can probably prop you up against a bar or two ;o)

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  11. That medication sounds awful :(
    I'm a big strapping 5' 10" - I'll be your body guard and won't let you fall down. I'm looking forward to having a laugh with you and I promise we'll keep you safe x
    Your pouches are looking lovely!

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  12. Oh Sarah, keep off the meds. We love you for you. If we don't manage to catch you would you like us all to fall over at the same time so it just looks like some crazy flash mob madness?

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  13. Sorry you had such a rough weekend and that you've lost your 'standby' but nothing is worth the meds making you feel worse than the condition (been there, done that - crashed the car!)
    I'm not sure I can get to the retreat but I know there'll be plenty of friends to cushion your fall if needs be :)
    Love your zippy pouches!

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  14. We can set up some sort of netting or airbag system around you if needs must, coz that has got to be better than those awful pills.

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  15. Glad you stepped away from the evil pills! I've had more vile medication than I care to remember and sometimes dealing with the original symptoms is by far preferable!
    I'd love to say I'll be around to help out at the retreat but I won't be and in honesty even if I was there I'd be no use, we'd both end up in a heap. I'm sure your lovely bee ladies will be all over you, so you'll have a fab time!

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  16. Oh, Sarah! I'm sorry you've lost your back up plan... Those meds sound terrible! Sounds like one of those instances where the "cure" is worse than the disease.

    I like that flash mob idea...

    Anyway, I'm sure you'll have fun at the retreat and there will be plenty of people around willing to stay by your side and help you avoid any mishaps.

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  17. Oh, what a shame but it really sounds as if they were making you pretty ill. Maybe, one day, there will be something new that you can try. Fingers crossed. Juliex

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  18. I'll be there to prop you up! You're absolutely doing the right thing staying far away from those awful meds. Honey, we are here for you and will help in any way we can. This is going to be a fab weekend for you, fab weekend for all of us, so please trust us when we say we're there to catch you :) xx

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  19. The bags are GORGEOUS! I'm going to FQ retreat too - so I look forward to meeting you there!!! That medication sounded absolutely DREADFUL! If you fall over, we'll catch you. Don't worry about it. People (especially quilters) are in my experience some of the nicest and most supportive people there are. You're going to have fun ....and fun you will have! Love Helen in Switzerland

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    1. Thanks Helen :-) Everyone is being so wonderful, I cant wait to go now!!

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  20. I'm so sorry you've had such a rough time of it and that you've lost your 'safety net' of going back on the tablets. I think everyone going to the retreat should make a Sarah-sized cushion (to be carried at all times) which they can use to cushion your fall (especially when you and Hadley get together)...or maybe everyone could spend the weekend sitting on the floor to minimise injuries? I really admire you for being so open and honest about it and I know that everyone will be very supportive and caring of you over the weekend but without hovering or making you feel like an invalid (a difficult thing to do but I know the Brit Quilters will manage it!). You're going to have a wonderful time, just remember to ask for help if you need it! Take care xx

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  21. P.S. The pouches are divine - your partner is sooooo lucky!

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  22. Looks like you've got zippers nailed now then!

    That's really scary crap with those side effects. Glad you gave in and called the doc. Not so good there's no other back up plan. I'm thinking some padded knickers to cushion your fall! You know you're going to laugh lots!

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  23. Sorry too hear about the crappy weekend you had. You will have a gaggle of quilty friends at the retreat to make sure you are safe. I think laughter will be the order of the weekend! You and that little cheekky miss Hadders always have me in giggles.

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  24. Awe Sweetie, sorry it was such a crap weekend, glad you didtched the meds and will be ready to hit the floor with you :) for extra soft landing of course! I can wobble with the best of them you know! It's gonna be a blast!

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  25. Aw sorry that things are getting you down health wise. I'm not going in June. I agonised about it for a variety of reasons, but in the end my own health issues mean that it could be a lot of money wasted if I was poorly with one of my 'turns' on the day and I couldn't go. At least you know that there will be plenty of people looking out for you!

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  26. Oh sweetie that's horrible but I'm so relieved you stopped taking them!
    I have some good padding on me and I'm pretty strong too so I'll be there if you fall. I'll also try my best not to make you laugh ;) Really though please try not to worry, I know it sucks but we're all there for you. And if you want to take Susan up on that I'll happily fall for you :)

    The pouches look incredible, both utterly gorgeous!!

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  27. oh I'm so sorry ... how rotten. Nothing worse than losing your standby ... but as everyone here has already said ... we'll catch you ... I'll even just stand behind you all w/e if you like ... I carry quite a few extra pounds, so I could just be your cushion!

    (still putting the pennies in the piggy bank in the hope that they'll transmute into the required pounds in time!)

    xxx

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  28. I promise not to make you laugh, and to be seated at all times!!
    So sorry the meds were a nightmare, hopefully it will all be so new and exciting that there's no chance of the auto-behaviour, I hope the random madness will work to your advantage xxx

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  29. Oh Sarah, what a pain they didn't work r you

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    1. Flipping blogger wine let me edit mistakes (WON'T, not wine!!) hope someone finds a magic cure fir you, (for) but at the retreat stick with Hadlety (Hadley) and I'm sure she'll be happy to look a twit ith you! (with)

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  30. Sarah, those pouches are gorgeous!
    Having witnessed your cataplexy first hand I want to assure you that while the first time is slightly disconcerting for the onlooker, it almost immediately becomes nothing "special" (ah, that's just Sarah slumping down the kitchen units again). Also, you unintentionally give your conversational partners a bit of an ego boost (that last joke was so good she lost consciousness! How witty am I?!). In fact you've got so many lovely friends there you'll probably have to make an effort to have more attacks so that everyone gets a chance to catch you!

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  31. So sorry that the meds didn't work and you had such an awful weekend - I can't imagine what it must be like.

    Those pouches are stunning - whichever you send to your partner I'm sure they will be thrilled to bits.

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  32. Sarah we are all happy to help you out that is what friends are about and it looks like you have plenty - isn't that fabulous and a testament to how lovely you are! Take heart an throw away the meds!

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  33. Oh Sarah, that all sounds horrible, you have really been through the mill. Glad that you are starting to feel better now!

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  34. Hello you, just catching up with the blogs and got to yours. I know it's easily said, but you mustn't worry too much about June. Like all the others say, we'll all be there to catch you/prop you up/move your features back into a smile/shave your eyebrows off (joke!) and if it makes you feel better, issue us all with a crib sheet "what to do when Sarah....". So looking forward to meeting you..now lay off the pills x
    PS extra cutting grid very useful cos I was getting in a muddle with my 18 different fabrics, in essentially only five colours!

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  35. Sorry about all the side effects you experienced. Like everyone says there will be lots of us ready to catch you. Pouches are gorgeous.

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  36. If a whole retreat full of quilters can't find something soft and fluffy for you to land on, that is a sad state of affairs :)

    I love the pouches you've made. I wish I had signed up for this one. (Me + zippers = foul words and cocktails) If your partner is dull as a rock and doesn't want it, I'll gladly take it off your hands :D

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  37. Oh Sarah, I'm sorry about the dreadful experience and the disappointment with your backup plan.
    Still, I'm sure that with such a great community of quilters you're going to have fun anyway.
    I'd love to be able to go to the retreat and meet you in person (and make you laugh and catch you too if necessary) but as it's not possible I'm just going to wish you the best of times.

    And the pouches are beautiful I may just like the natural linen one a tiny bit more :)

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  38. Hey Sarah...... I can see my beautiful pouch here...... thank you thank you thank you so much, I simply love it. What a fab surprise when it came through the post earlier this week. You are so kind. I'm a bit (well very) behind on blogging this week, but I have just written you a letter to say a proper thank you. I also wanted to comment on your post, sorry that things are tough for you.... that sucks! I am at the retreat on the Saturday, and just like everyone else has said, I will catch you - we will make you laugh, and we will make sure you are OK laughing :)

    x

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