phantoms_siren: (Decaf?)
I'm still having physiotherapy. We've only recently started work on my actual spine, the loss of core muscle structure was so severe there wasn't really anything to work with. Th process is still horrendously painful but the after effects are gradually improving. I can finally touch the floor from standing again.

However I still have bad days, so I asked my doctor about my pain meds. I' currently taking two co-codamol at a strength of 30/500 ever 6 hours. It isn't really making a dent on the pain, mostly it just leaves me feeling spacy and wierd. I'm wierd enough as it is, I don't need help on that front.

I pointed out that most over the counter painpills have very little effect on me as I take so many to deal with my usual day today pain.The only tablet that has a lasting effect is Aspirin and that just makes me bruise horribly.

So he doctor suggested I swap the co-codamol for paracetamol 500. Yes, because the same quantity of paracetamol without the codeine is going to be soooo much more effective than taking it with the codeine. I must have looked at him as if he were stoned as he then suggested I take Ibuprofen 400. Not with anything else, just on its own. He might as w3ell have suggested homeopathy or taking 2 Skittles every 4 hours for the good that would do me.

I'm stuck taking the co-codamol as he wouldn't offer anything else.

Fail.
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)
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: (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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