I managed to hurt my back stepping over a rock on Tuesday. I put my left foot down, shifted my weight and BANG. Pain shooting from my hip, up to a point slightly above my left buttock, then right through my abdomen. I have since been walking with a very fetching limp. After walking the 3/4 mile to work yesterday, I was in enough pain to feel sick, and I was drained. Work was hard. I managed to avoid crying. Just. I crouched to arrange books on a low shelf - I favoured my right leg to stand up and my knee (in a way it does) collapsed. By the time I got home, ate, and crawled into bed my knee, hips and back were in awful pain.
Things can only get better?
I woke up this morning at 6.51. Fine. I fell asleep again and was awoken at 9.33 by my friend who I was meant to go out with. I get out of bed, dress and let him in. He puts the kettle on and I dash upstairs to clean my teeth. Dash back downstairs, take meds. Then I start to shake, I feel sick, I sweat... I sit down on the stairs, whilst Daniel hovers awkwardly in the kitchen. I feel much better after about a minute. I go back to the kitchen to apologise to Daniel and tell him to go home. My vision starts clouding up, I feel dizzy, I can't see anything at all. I lie down, right there, on the floor. Last thing we want to do is faint. I persuade Daniel to go home, and remain on the kitchen floor for some minutes. Eventually, I crawl into the lounge and collapse on the sofa.
It didn't take long to feel better, and I self-medicated with bacon and crisps (salt is known to raise blood pressure). Now I feel headachey, and a little rough. What caused my blood pressure to fall so low this morning? Going so quickly from asleep to running about? Being in less pain than I've adjusted to lately? Not taking sufficient medication for my pain? Poor diet? Pathological cause?
Whatever it was, Daniel is terribly concerned (he offered to take me to hospital) but I feel a whole lot better now.
Friday, 25 September 2009
30 things...
1. The illness I live with is: Juvenile Arthritis
2. I was diagnosed with it in the year: 2008.
3. But I had symptoms since: ~2004.
4. The biggest adjustment I’ve had to make is: knowing when to stop.
5. Most people assume: I am young therefore I am fit (and a bit of a hypochondriac).
6. The hardest part about mornings is: the time it takes to work out how much pain is going on and what my current limits are.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my laptop. When I'm in too much pain and too tired to do much more than get out of bed, it keeps me connected with the outside world.
9. The hardest part about nights is: not being able to sleep and being so alone.
10. Each day I take: less pain medication than I should.
11. Regarding alternative treatments I: am open to anything that will reduce my pain without the side-effects of opioids.
12. If I had to choose between an invisible illness or visible I would choose: invisible. Whilst I hate that it is so easy for people to deny or disbelieve my pain, I do like that I can choose to disclose as much or little as I like.
13. Regarding working and career: I hope to live as normally as possible by persevering with education until I am qualified enough for my pain not to be too much of an issue.
14. People would be surprised to know: that I am in pain ALL THE TIME.
15. The hardest thing to accept about my new reality has been: not being able to do things with my Rangers - camps, hikes, etc.
16. Something I never thought I could do with my illness that I did was: work full time hours (only temporarily).
17. The commercials about my illness: tend to show only one aspect of middle-aged women with stiff hands.
18. Something I really miss doing since I was diagnosed is: writing for as long and as long as I like.
19. It was really hard to have to give up: my independence.
20. A new hobby I have taken up since my diagnosis is: medical research.
21. If I could have one day of feeling normal again I would: go camping with my rangers.
22. My illness has taught me: not to overdo things and push myself too hard.
23. Want to know a secret? One thing people say that gets under my skin is: people not believing when I say I'm in pain.
24. But I love it when people: listen, ask intelligent questions, and offer hugs.
25. My favorite motto, scripture, quote that gets me through tough times is: "you're the ninja-mistress of pain management".
26. When someone is diagnosed I’d like to tell them: educate yourself, advocate for yourself, and feel free to fight the doctors if they don't listen to you.
27. Something that has surprised me about living with an illness is: that you never, ever get used to it.
28. The nicest thing someone did for me when I wasn’t feeling well was: hug me.
29. I’m involved with Invisible Illness Week because: I think it's really important that people are aware of these things.
30. The fact that you read this list makes me feel: a combination of good and bad.
Thursday, 24 September 2009
Pain
The title of this blog comes from a song by John Mayer. It was featured on House in series 3 when House's pain returns.
Gravity is working against me,
And gravity wants to bring me down.
Oh twice as much aint twice as good
And can't sustain like one half could
It's wanting more that's gonna send me to my knees.
I have pain in most of my joints: hips, knees, ankles, feet, hands, wrists, shoulders, lower back, jaw, ribs, clavicle. The pain started in my left wrist, then my right, then all the small joints of the hands, then my knees, then my whole body flared up into one mass of pain. For some reason my elbows are almost completely spared. Now, my wrists, hands and hips are the worst affected. Often the pain in my hips radiates all around my groin and lower back so I can't sit, stand or walk comfortably. I also have almost unbearable stiffness all over when I wake up in the mornings. It takes me a long time to work out where each of my body parts are and how to use them.
I must warn you now, this blog is primarily for documenting my pain, discussing issues relating to my pain, and sharing my experiences of pain. I have other outlets for intellectual discussion re: politics, literature, media and so on. I am starting this blog because I have found great comfort in other people's pain blogs, and I feel it is time for me to give something back.
I don't want to start off with a post about how much pain I was in today, how I felt sick with it and couldn't see straight - I'll open up slowly.
So, just an introduction for now... Back soon.
Gravity is working against me,
And gravity wants to bring me down.
Oh twice as much aint twice as good
And can't sustain like one half could
It's wanting more that's gonna send me to my knees.
I have pain in most of my joints: hips, knees, ankles, feet, hands, wrists, shoulders, lower back, jaw, ribs, clavicle. The pain started in my left wrist, then my right, then all the small joints of the hands, then my knees, then my whole body flared up into one mass of pain. For some reason my elbows are almost completely spared. Now, my wrists, hands and hips are the worst affected. Often the pain in my hips radiates all around my groin and lower back so I can't sit, stand or walk comfortably. I also have almost unbearable stiffness all over when I wake up in the mornings. It takes me a long time to work out where each of my body parts are and how to use them.
I must warn you now, this blog is primarily for documenting my pain, discussing issues relating to my pain, and sharing my experiences of pain. I have other outlets for intellectual discussion re: politics, literature, media and so on. I am starting this blog because I have found great comfort in other people's pain blogs, and I feel it is time for me to give something back.
I don't want to start off with a post about how much pain I was in today, how I felt sick with it and couldn't see straight - I'll open up slowly.
So, just an introduction for now... Back soon.
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