Saturday, 2 January 2010
Friday morning, I awoke. Stared at the ceiling. Contemplated getting out of bed.
I was scared.
I didn't want to get out of bed and feel that pain again. It was terrifying.
I have never been scared of pain before. I've decided that it's best to avoid painful situation, but I have never feared pain.
I did get up, eventually, and it wasn't too painful. Throughout the day it worked back up to full power, but the respite I got when I awoke was enough to hopefully prevent further morning fear. We hope.
Friday, 6 November 2009
I'm at university now. Everything is new and scary and I am struggling a bit. Some things have gone wrong in my personal life as well. I have had to go and talk to my tutor about the problems I am having. This is something I would rather not do.
I have always been the person who sat quietly in the corner, and always did well. It was always a surprise too. I never really spoke or joined in, I just did and learned and got on and became known as Clever. I like that. I know that can't carry on, and work steps up a notch at university. But now I am different. I am the girl who goes and makes excuses for why things aren't good enough.
I hate that I have to be that person.
Saturday, 24 October 2009
We were chatting, and I mentioned something about arthritis (I think we were on fingerless gloves). Michael made a face and said, "That really must not be fun." I smiled, and shrugged. "I'll live." He looked me right in the eye and just said, "I know." I looked puzzled, not sure exactly what he was saying. "I can tell. I know you well enough."
That comment made me super happy. I am so glad that the impression I give someone in the first week of knowing them is that yes, I have an autoimmune disease, but it does NOT define me, I'm more than that.
Very happy about that.
Wednesday, 14 October 2009
Can I say this without sounding like a cheesy movie voiceover? I shall try.
My experiences over the past few days have shown me how much I have grown. There was a time that eating in a restaurant, staying in a hotel or even at someone else's house would have me in a panic. Now, I am living somewhere new, I know no one, I am sharing a kitchen with 11 other people, and I am doing alright. Yes, it is difficult. It is definitely not perfect. But I am doing alright and I do not want to go home.
I've met some good people. I can only count two of them, Michael and Shaun, as proper friends now. There is a chasm of difference between these two boys. Michael is a privately educated scholarship boy, with every d-thing you can name (dyslexic, dyspraxic, d...iabetic) and a neatness compulsion. He also has some of the most horrifying dysfunctional family stories I have ever heard. Shaun is a very Northern emo/goth/alternative guy. He's very into black humour and alternative/metal music. He dyes his hair frequently. He comes from a loving family and has only moved half an hour away because he will miss his dogs. I get on so well with both of them, I really think we will be attached in some way for the rest of our courses. What would happen if I introduced Michael to Shaun I can't imagine!
Now onto the stuff that is relevant to this blog, I'm sorry to keep you waiting so long!
Whilst Michael was being so honest about all his Ds, and another chap mentioned he had dyspraxia too, I decided to jump in with my medical condition. I have Juvenile Arthritis. This prompted a high five from Michael, who has arthritis in his foot following a 50 mile an hour bike crash into a tree. Upon explanation that I have the autoimmune form, therefore all my joints are affected, he was very sympathetic. But not in an irritating way. Let's just say he was understanding, and I felt extremely comfortable talking to him about it.
This was a revelation for me. I don't usually talk about my arthritis in real life, and only my closest friends know it. It was so odd to tell someone so soon, but it felt good.
Expressing the fact I am in pain is a next step - we will see what we can do.
Monday, 5 October 2009
It's October. The weather is changing, the long dry spell is ending, and my body knows it.
On Friday evening I was at Rangers. I was sitting, watching the others do each other's hair, planning for an open night for which I won't be present. About halfway through, after an hour of sitting the pain surges in my hips, and that added to the all-over pain I have thanks to the weather is just too much. Before I clock the pain my mood nosedives, and I become mean, bitter and irritable. I withdraw into myself, remove myself from the conversation and start playing a game on my iPod. When I have something to add, I am not listened to, so I raise my voice, change my manner so I am condescending, and I imply that the girls are all young and stupid. I apologise hastily, but the damage is done.
When I get home I take painkillers. Within half an hour, I can detect no difference in my pain level whatsoever, but there is just enough space in my head to be a decent human being.
I need to learn how to deal with my pain before I turn into a monster. We'll work on that.
Friday, 25 September 2009
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.
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.