phantoms_siren: (Spoons)

alt


Found this on Glass of Win, a quality blog, I heartily recommend it.

1. The illness I live with is: Lupus, Fibromyalgia, Reynauds, (possibly IBS)
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: going part-time at work, I only work 23 hours a week now, a big change from the 40 I was working before. It took a lot to admit that I weasn't able to manage what everyone else could do any more. I've yet to take the financial hit from the change but I think my health is worth more than the money.
5. Most people assume: I can do just one more thing. Sitting is just as tiring for me as standing, so sitting in a pub for another 6 hours is not necessarily an easier option.
6. The hardest part about mornings are: standing up and walking across the room for the first time. My joints are always out of position or stiff making coordination a struggle.
7. My favorite medical TV show is: House is my favorite by far, the work they've done to raise the profile of lupus is invaluable.
8. A gadget I couldn’t live without is: My BlackBerry, if I'm too tired to sit up I can still access the internet, I can keep all my medical appointments and info in one handy place and I can google medication info wherever I need it.
9. The hardest part about nights are: getting to sleep. I have the most energy late in the evening. My natural sleeping time is 4am to midday but I have to go to work at 6am so I try to force myself to go to sleep at 11pm. Laying down causes more pain so its hard to relax and let go of everything.
10. Each day I take 8 pills & vitamins.
11. Regarding alternative treatments I: adore yoga but I've never tried anything else. I keep an open mind but I'm wary of the obvious frauds and placebos.
12. If I had to choose between an invisible illness or visible I would choose: Neither. Visible illnesses have all their own problems, I'd prefer something treatable or understood in either camp over the wishywashy diagnosis I have right now.
13. Regarding working and career: I already mentioned going part-time. Ultimately I want to work for myself, creating art, preferably in a way that lets me stay in bed when I need it.
14. People would be surprised to know: that I still think the way I did before I got sick. I still want to do the things I've always wanted to do. I don't *want* to stay home and be boring.
15. The hardest thing to accept about my new reality has been: Planning for the future and knowing that there will never be a time when I feel any better.
16. Something I never thought I could do with my illness that I did was: be able and well enough to create art that could get into a gallery.
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is: Touring. I used to follow bands and enjoy concerts night after night despite traveling hundreds of miles during the daytime. Now I'm lucky to sit through a whole concert whilst feeling miserable, enjoyment and dancing and extremely rare.
19. It was really hard to have to give up: just getting up and going places. Everything needs weeks of planning now.
20. A new hobby I have taken up since my diagnosis is: Knitting and crochet. I adore knitting, its very relaxing and you get soft warm things out of it.
21. If I could have one day of feeling normal again I would: go to a theme park with my beloved and ride all the rides at least twice, then dance and booze the night away.
22. My illness has taught me: life sucks but there's no point moping cos being miserable doesn't make it any more bearable. You die when you die and there is nothing after, why waste the time inbetween.
23. Want to know a secret? One thing people say that gets under my skin is: "why don't you try random-over-the-counter-meds?" I've tried them all, the pain doesn't go away, the best I can do is make it bearable.
24. But I love it when people: Understand and just let me sit when I need to or meet me for coffee on the rare occasions when I can manage it.
25. My favorite motto, scripture, quote that gets me through tough times is: Build a man a fire, he'll be warm for a night. Set a man on fire and he'll be warm for the rest of his life. Wait... that's not right...
26. When someone is diagnosed I’d like to tell them: don't settle for the crap the doctors will tell you. Don't let them dismiss you. Ask the questions you need answered and if they refuse to answer ask again more louder.
27. Something that has surprised me about living with an illness is: the relentlessness of it all. There is rarely a moment not coloured by the pain.
28. The nicest thing someone did for me when I wasn’t feeling well was: Made rogan josh and chai, and tucked me up on the sofa with ice cream and Labyrinth.
29. I’m involved with Invisible Illness Week because: the more people know about invisible illnesses the better life will be for everyone affected and the fewer lonely people there will be in the world.
30. The fact that you read this list makes me feel: grateful. And hungry :p
phantoms_siren: (Spoons)
I did the Twist and Detox sequence two days in a row, cos you know, the way to fix something really painful is to do it again right? Yeah, I know, I'm an idiot.

I suspect my colleagues got sick of me complaining about my "broken" ribs so I was ordered not to do it again. Ever. I probably will but I'll save it for days off work. So today I decided do a Jason Crandell sequence only to find that my iPod had deleted them all. So whilst I'm waiting for them to redownload I went for the easiest sounding lessons of the four I had left.

I ended up with this 20 minutes Gentle Flow sequence which states it suitable for beginners. However the lesson starts with blocks right away, which I didn't own until I'd been doing yoga for over a year so that rather threw me.

The poses themselves were mostly easy enough, though not things I would have trusted myself with 6 months ago, not without a hoist to rescue me if I got stuck anyway. Some of the side twists I could do to the advanced level whilst some I needed major assistance from the blocks for others, I guess I can twist away from my body better than I can twist over it. Which is useful to know cos its another area to focus on.

I find it hilarious that people in the comments are bitching about the Down Dogs in this though, it's a "calming" sequence with Tree in it and you're focusing on Down Dog? I still hate Tree. I will probably always hate Tree. I still tried to do, even though its anything but calming, and I crashed out immediately, as always. Next time I do this sequence I'll replace it with something less stressful. Like juggling scorpions :p

Kathryn Budig's teaching style is starting to grow on me though, it's not as relaxing as Jason Crandell's but it does make the lesson go more quickly. Plus I'm more aware that its ok to get the pose wrong and therefore end up working hard towards getting it right because failure is less scary.
phantoms_siren: Study Hard And Be Evil (Study Hard And Be Evil)
Just did this 20 minute Twist and Detox and wow, my legs are killing me. This was a waaaay faster sequence than I'm used to and I struggled to understand some of the instructions so in the end I cut out a lot of the Up Dogs in favor of keeping up with the main poses. I actually managed all the poses with minimal difficulty and not one fall, though twisting with hands in prayer position isn't all that easy when you have rather sizable sweater cows.

Lost another 2lbs. Sleep now.
phantoms_siren: (Way To Go)
When did I last update? April 28th? Bugger.

Yeah, May wasn't the best month in terms of health. I finally left training and started proper extended shift work in my extremely stressful new job, which pretty much destroyed my immune system. Plus a lovely stomach bug and a bunch of serious family stresses resulted in a month on laying on the floor and feeling sorry for myself.

I have managed to do a little of the Yin Yoga sequence I mentioned last time a few times a week but not very much. I have been doing hand poses and a bunch of shoulder stretches pretty much continuously at work to try to stay calm but I knew it wasn't enough.

I finally got an effective wake-up call at my consultant appointment when I was told I'd regained all the weight I'd lost over Christmas and was told I'd need to go to physio for my knee (suspected old break or fracture) and back/chest pain. I'm extremely sensitive about my weight, and being told I was gaining rather than losing upset me a lot. That's the main reason I stopped touching the Wii Fit, I couldn't cope with the nastiness of the machine if I gained a pound, so being told I'd gained 7 was a slap in the face.

Thankfully I hadn't gained 7lbs. Five of them were my shoes. Yes I am that much of an uber goth that my shoes weigh 5lbs. In the week since I've managed to shift another 3lbs by going back to my old non-self-pitying diet. I'm only eating one chocolate a day now rather than two whole bars. Trying to stay under 1,500 calories, generally managing around 800 on days when I can't walk my two morning miles.

Anyway, now I'm a pound lighter than I was at my previous best. Huzzah. Just another 40 to go.

Been doing my usual Jason Crandell sequences all week but I felt like a change today so I decided to try this sequence that Yoga Journal posted on twitter. I was quite surprised when I managed to do the Three-Legged Down Dog pose without difficulty. I also got further into Virasana (Hero) than I have before, it's a difficult pose for me as a I carry a lot of my weight at the bottom of my thighs so its hard to bend my knees that far. However, during the set up for Vasisthasana (Side Plank) something went CRACK in my left foot. It doesn't actually hurt, just aches, so I think it was something I put out of place two weeks ago (I kicked a door) going back into position, but there was no way my foot would support me in poses I normally struggle with anyway. When the pose progressed to waving feet in the air I just had to laugh. There ain't no way I can do that yet!!

I'm gonna do some shape boxing, then try to do a relaxing sequence later on.

I don't have a date for my physio appointments yet, I have no idea what to expect, last time I had physio was about 8 years ago and it really didn't go well. It was when I first started showing symptoms of fibromyalgia and connective tissue problems and whilst the PT was very sympathetic the PTA actually doing the therapy was not and refused to treat me at all during my last two appointments. Frankly I'm rather worried that it's going to be more of the same.
phantoms_siren: (Spoons)
Monday I didn't feel well enough to try anything exciting (after doing the standing hip openers and falling down so much) so I just did the relaxing sequence. Yesterday I felt good. Really good. I thought "hey, I feel good! What could be the harm in doing some core strengtheners?"

Oh my gods will I never learn? I technically did the whole sequence but a lot of it was spent getting stuck in poses or falling out of Plank Pose. But I felt ok afterwards and like I'd made some progress. This morning I didn't feel so great, by lunch I felt the tell tale signs of an oncoming flare.

Right now just the effort of sitting upright is utterly exhausting, I can't think to the end of a sentence or hold a conversation and my tattoos are all raised up. The thought of even getting onto the mat to do my usual kind of yoga makes me feel ill.

However, this Yin Yoga sequence looks like something I can manage, sitting still and not moving much, I can do that. I hope.
phantoms_siren: Zathras Good At Doings, Not Understandings (Zathras Good At Doings)
I originally started yoga with the Wii Fit program. I had always been told that I fell down so much because I had bad balance (I had a litany of ear problems as a child and am still partially deaf) and that I shouldn't do yoga or anything like that as my poor balance would make it dangerous.

Interestingly the Wii Fit proved rather quickly that I actually have pretty good balance, despite my poor body condition. I've since decided I'm just hopelessly clumsy.

Anyway the poses on the Wii Fit are a bit strange. I always struggled with "Triangle" pose and used to get really annoyed that I couldn't get it right when everyone said it was a relatively easy pose. Imagine how frustrated I was to learn months later that what they called "Triangle" was actually Parivrtta Trikonasana (Revolved Triangle Pose) and harder than the starting pose.

After Wii Fit I moved on to My Fitness Coach: Get In Shape, which has the benefit of having a linked flowing workout rather than stand alone poses. Though it was problematic with the lack of spoken instructions and not progressing through poses at the speed I wanted. Through that program I got used to a lot of the basic yoga poses (though some were referred to by odd names, like the "monkey" pose, which seems a bit like Ardha Uttanasana but certainly wasn't Hanumanasana).

I have no real problem with Utthita Trikonasana (Extended Triangle) and I can usually get into Parivrtta Trikonasana (Revolved Triangle Pose) if I'm having a good day. Utthita Parsvakonasana (Extended Side Angle Pose) is actually easier for me than either of the others, probably because bending one leg takes some of the stress off my tight thighs/hips.

However, Parivrtta Parsvakonasana (Revolved Side Angle Pose) flummoxed me. I know there are different versions- hand to the floor, hands in prayer position and the "bound" version which frankly looks terrifying. Somehow I epically failed to make it into any of them, my body was fine but finding a stable point on my feet was impossible, I basically tipped forward onto my face no matter what I did. I suspect my feet aren't shaped right for this pose.

Annoyingly, Garudasana (eagle pose) with just one foot on the floor? Not an issue. So why am I falling on my face when I have three points of contact with the floor?

Hmmm

Apr. 24th, 2010 05:59 pm
phantoms_siren: (Namaste)
Well I definitely have less flexibility when my hips are in the correct place.

I did Jason Crandell's "Backbend Sequence" last night (can be found on Yoga Journal) and found it much harder to get into Eka Pada Rajakapotasana (One Legged Pigeon Pose) correctly, and over all I felt like I wasn't getting nearly close enough to the floor. Of course I'm not going to put my hip back out of joint just to do this pose though, I can live with being s bit less flexible in yoga if it means not walking like Igor during my day to day life.

I managed to get into Dhanurasana (bow pose) briefly, but again I found that my weight was a hindrance as my chubbiness made it hard to flex my legs far enough to grip my ankles in the first place. I suspect this is a pose that might benefit from using a strap until I can get some of the weight off my legs. Annoyingly, I've always had huge calf muscles, even when I wasn't fat and was "underweight" I still had to buy my boots from specialist shops. I also attempted Urdhva Dhanurasana (Upward Bow) and made it as far as the crown of my head. Definitely much too advanced for me!

Salambhasana (Locust Pose) makes me panic. A lot. I struggle to breath through my nose and I hate hanging my head down as it feels like suffocating. As such I often have to fight myself not to over curve my neck in this pose as my body instinctively wants to keep my head at 90 degrees to the floor. The only reason I don't have this problem in Down Dog is that I'm distracted by panicking over the possibility of my arms giving way and dropping me on my head. Basically anything with my head not upright and no easy way out stresses me out.

As a result of that I love Urdhva Mukha Svanasana (Up Dog) and Bhujangasana (Cobra) as they offer a comforting way out of Down Dog. On the other hand panic sometimes causes me to rush and force myself into the backbend too quickly to "escape" from Down Dog.

I've started taking out Down Dogs from the sequences and tried to find the best way to move between poses without dropping my head. That's probably not a healthy approach as I'm missing out on stretches, but if I had to keep them in I doubt I'd practice at all.

I noticed during that practice that my Virabhadrasana I (Warrior 1) pose was shocking poor, I've had a cold since December and have been neglecting the standing poses in favor of easy seated poses. I think tonight would be a good time to do a standing sequence.
phantoms_siren: (Yoga)
This week I've mostly been following Jason Crandell's "Relaxation Sequence" video from www.yogajournal.com as it's mostly made up of seated twists and forward bends. Since my left hip has been partially out of joint all week I didn't think it was really safe to risk any standing poses. I've fallen on my face before during yoga, it's an experience I'd rather avoid.

In this weeks practice I've learned/achieved:-

I actually managed to reach the edge of my foot in Parshva Upavistha Konasana (Side Seated Angle) which is a very big thing for me. My hips, thighs and back are very tight and don't bend well, plus I'm sure my arms are too stubby, anyway being able to get even close to my feet in any seated bend is an acheivement. Actually touching my foot, huge event.

Gomukhasana (Cow Faced Pose) is a wierd one for me, despite my left hip being the troublesome one I always find that its the right one that objects to this pose the most. Despite my arms being pretty week (I still struggle with Down Dog most days) I find that there is absolutely no challenge in the arm portion of the pose, I can easily grip my wrists behind my back in this pose. Similarly I find nothing challenging in following my hands into prayer position behind my back either.

I've found that I adore the prep version of Eka Pada Rajakapotasana (One-Legged Pigeon Pose) though again I can get into the pose perfectly with my left leg behind, but with it in front my right hip protests too much to get all the way to the floor. So for now I'm working with a bolster on both sides of the pose, rather than stretching one side a lot further than the other, I suspect that'd just make the problem worse. I wish I could stay in this pose for an hour at a time, it's wonderfully relaxing.

Ardha Matsyendrasana 1 is also incredibly relaxing, and is one of the few seated poses that I can get into prefectly in both directions. I have to admit I often just watch TV or read in this pose, probably not a good idea but my hips seem to like it.

I hate Supta Padangusthasana (Reclining Big Toe Pose) as I can't reach either of my feet, and even getting them with a strap is a painful struggle. I'm also not a fan of Balasana (Child's Pose) as my legs are too fat to get into the position comfortably and bruised knees don't appreciate the pressure. Clearly I'm some kind of freak cos everyone else seems to love it.

Thankfully my hip went back into its socket at about 2am last night (mmm being woken by screaming pain, such fun!) so I'm going to attempt a different sequence tonight, probably the backbend sequence from the same series.
phantoms_siren: (Namaste)
Exercising and getting fit when you have an autoimmune disorder is a lot more work than just getting fit. I have lupus and fibromyalgia. Even gentle low impact exercise can leave me in crippling pain, strenuous exercise can incapacitate me for days. And by "strenuous" I mean 20 minutes of shape boxing or half an hour of gardening. I can't even imagining running a marathon or going on a long hike.

It's hard to build any kind of routine when you can only fight through pain for so long. Usually I'll take up a new exercise or sport, get used to it over a few weeks, try to go to the next level, hit that invisible limit and cripple myself, then try to get back to it a week later and find that I'm bored with the "easy" stuff, but can't cope with any beyond it. It's hard to stay motivated and engaged when you have to stick at beginners level.

So far yoga is the only thing that I've been able to stick with for any real amount of time. It's a lot easier to avoid stress, strain and overwork whilst still doing something of benefit. So far yoga hasn't really helped me lose weight but I'm more flexible that I've ever been, I'm able to progress through a lot of poses at a reasonable rate and I feel much more balanced in myself.

The really important thing is remembering how much yoga helps. Especially right now, when my hip is partially dislocated and I can't move my head as my neck muscles are messed up, when my vision is going misty from pain, its hard to think about doing anything at all, let alone crawling around on the floor doing Adho Mukha Svanasana or Ardha Matsyendrasana.

Therefore my aim with this journal (beyond general diet and exercise) is to record my yoga practice, to try to remind myself daily of its benefits, note my advances, focus on areas that need improvement and ultimately prove to myself that I can achieve something despite the pain.

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Phantoms Siren

January 2012

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