30 things

I did this last year, too, and it was the catalyst that started me blogging more about my chronic illness. I figured it would be interesting to do it again and see what has changed. It’s also a great precursor to Invisible Illness Week, which starts tomorrow.

1. The illness I live with is: psoriasis, psoriatic arthritis, migraines
2. I was diagnosed with it in the year: 2000 for psoriasis and 2005 and again in 2009 for psoriatic arthritis.
3. But I had symptoms since: 1999 and 2004.
4. The biggest adjustment I’ve had to make is: being OK with the fact that I can’t do everything I used to.
5. Most people assume: that I’m not sick at all.
6. The hardest part about mornings are: how stiff, exhausted and sore I feel.
7. My favorite medical TV show is: Scrubs.
8. A gadget I couldn’t live without is: my iPod to pass away long hours in waiting and infusion rooms.
9. The hardest part about nights are: how hard it is to fall asleep and stay asleep.
10. Each day I take __ pills & vitamins. (No comments, please) 23 plus a weekly injection
11. Regarding alternative treatments I: am willing to add them to my regimen, but they’re part of an approach that also includes conventional medicine.
12. If I had to choose between an invisible illness or visible I would choose: I’m not sure. There are benefits and drawbacks to each.
13. Regarding working and career: I work. It makes me feel normal. I hope I can continue working for as long as possible.
14. People would be surprised to know: how much pain I’m in every day. My tolerance for such things have gone up.
15. The hardest thing to accept about my new reality has been: that there are consequences for everything. Every activity — even small ones, like blow drying my hair — take something out of me. I have to decide what’s worth it, what’s essential and what can be left for another day.
16. Something I never thought I could do with my illness that I did was: teach Sunday school. Well, I’m trying that this year, so I guess we’ll see how it goes.
17. The commercials about my illness: are non-existant. And the ones I see for immuno-arthritis always show older people.
18. Something I really miss doing since I was diagnosed is: being able to pack my days full and not worry about how I’ll be feeling tomorrow.
19. It was really hard to have to give up: the freedom to do whatever, to not think of my energy as a finite resource.
20. A new hobby I have taken up since my diagnosis is: jewelry making.
21. If I could have one day of feeling normal again, I would: dance, go horseback riding, take my dog on a long walk, read all night, spend time doing things my husband wanted to do.
22. My illness has taught me: the value of patience.
23. Want to know a secret? One thing people say that gets under my skin is: “Arthritis? Oh, my grandma has that, and she’s fine.”
24. But I love it when people: don’t treat me like an invalid when they find out I’m sick.
25. My favorite motto, scripture, quote that gets me through tough times is: God knows our situation; He will not judge us as if we had no difficulties to overcome. What matters is the sincerity and perseverance of our will to overcome them. — C.S. Lewis
26. When someone is diagnosed I’d like to tell them: grieve. It is essential. Grieve for who you used to be, who you thought you would become, your lost dreams, your health. Then, get on with it.
27. Something that has surprised me about living with an illness is: how strong I am.
28. The nicest thing someone did for me when I wasn’t feeling well was: marry me anyway.
29. I’m involved with Invisible Illness Week because: invisible illness is only invisible for as long as we don’t put a face to it.
30. The fact that you read this list makes me feel: content.

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7 thoughts on “30 things

  1. Hiya,

    I really enjoyed reading that, as a fellow P, PsA, and migraine sufferer. It’s a comfort to know i’m not the only one living with an invisible illness. I am 24, and many people around me expect my lifestyle to be lots different to how it is…. “If I was your age again I’d go travelling…..!” “why do you go to bed so early, you’re only a young thing!” and so on.

    The weather here in Ireland is coming into a colder autumn… I can feel my joints go mental in the mornings already.. Just thinking about the long long winter ahead is very depressing.

    I’ve gone from treatment to treatment… I’ve managed to get my (very severe) psoriasis in a state of somewhat remission thanks to Enbrel.. yet my joint pains still exist.

    On the migraine side of things, they are getting debilitating. I get migraines and cluster headache episodes constantly. So much so I have to go for a brain scan. Its hard to push on when your body resists so hard.

    I wish you well for your future and to a successful treatment.

    Hannah. 🙂

    • Hi Hannah:
      Ugh, tell me about it. I’m 26, and people always tell me the same thing! But it’s important to take care of myself — as I’m sure you know! — so I can enjoy the things I am able to do.

      I live in the southern United States, and it’s the humidity that really gets me here. (Plus, as a Canadian, I am just not cut out for 50*C plus days with 90-100 percent humidity, but that’s another story entirely.) It makes my joints go crazy and I get more migraines when the humidity is up.

      Enbrel worked for me, too, for awhile. Hopefully, it eventually puts your joints into remission, too. I’m sure you’ll find something that helps both your P and your PSA! 😀

    • Hannah, I can totally relate! I have P and PsA, and I’m also 24. I’m also currently recovering from a very severe bout of Glandular Fever, which has made my life hell this year. I live in Adelaide (South Australia) and after my second, much colder, winter here and promises of another 40+ degreeC Summer, I’m ready to move to a more temperate state! I can only imagine what your winter is going to be like!

      • Thanks for replies, Abi and Nessie!

        Wow, I’ve never come across ANYONE my age with PsA. Everyone around me in the skin clinic is mega olds. I’m only the second in my clinic to have access to Enbrel because of the high criteria you have to reach to gain access through our Health service.

        I find that I do also get migraines with the humidity here (the cold humidity lol!) its rarely below 70% humidity in Ireland with that big ol’ ocean to the west, heh. The cold + humidity is horrrendous on my joints! It often gets very cold here (we were into the minus celcius here for a good part of the winter) and the ice is scary when you have to try and walk on it. One fall and that could be you done for! (thats such an “old” thing to say heh)

        My sister had glandular fever herself (she’s completely normal – no P or PsA) and she was really really sick. We nearly had to have her admitted to hospital after not eating or drinking anything in a whole week. Somehow, I didn’t catch it.. Someone must have been looking out for me on that count… I was so scared for her and I can only imagine the pain you went through Abi 😦 I hope you get better real soon.

        I’ve had P since I was 4, and I can sympathise with the whole school bullying thing (i was tormented sadly!) then diagnosed with PsA at the age of 19. (we’re awfully similar Abi haha!!) then ive got a few other medical complications – reoccurance of a squint (which I need operated on), migraines, bowel disease (in the process of diagnosis) and I’m seeing a Neurologist for a problem that may be muscle/brain related, as i’ve gotten very clumsy and out of the ordinary fatigue. It’s never ending! The only thing people see (or saw now i’m in remission) is a skin condition which they thought wasn’t painful, or annoying, just ugly. I’m expected to be a vibrant 20something with my life in front of me but I don’t always feel like it!

        The icky creams comment made me remember something. Once I tried a cream for my scalp which was made from banana extract. Exorex! and one of the plonker bullies in school said that it looked like I had been in a fight with a banana and lost. I did actually laugh at that one because it was true!!

        If any of you guys would like to get in touch with me personally you are all more than welcome to. I’m lucky that I have a lot of support on the Psoriasis side of things (its quite common in Ireland – we’re all inbred bastards =P) so I’d like to be a support to others.

        My email address is hannata@hotmail.co.uk 🙂

        Love to all H x

  2. Thank you so much for sharing this, I don’t know many people who have P, let alone PsA, so it’s good to know I’m not alone. I went through hell in high school because of my Psoriasis, only to get into Uni and be diagnosed with PsA at 19yrs old (after the excruciating pain I went through with 2, 3 hours writing exams within a day of each other – Everyone just laughed about how they had hand cramps and couldn’t understand the pain I suffered). I guess I’m lucky that I haven’t had too many flare ups since I was first diagnosed, usually it’s just a general joint stiffness. Though recently I had a bad turn whilst Swing Dancing and had to bandage my wrist for a couple months.

    I’ve gotten to the point where I don’t bother with Drs and Specialists anymore. I once waited for 2hrs in a waiting room so I could see my skin specialist for 10mins. She was a beautiful young woman who had the balls to sit there and tell me (I was about 16 at the time) that she totally understood what I was going through, as a young girl who didn’t want to cover myself in icky, smelly creams and ointments because I would get teased by other kids. I never went back after that. When my Arthritis was diagnosed, I had the specialist tell me what he thought was obviously an inspirational story about some famous artist who got arthritis when he was old and started painting with his feet instead. Except I was 19 and likely to see that point a good 30 years before said famous artist. I’m a costumer/seamstress so my hands are my life!

    Anyway, I just wanted to say thank you!

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