…then suddenly, the sun came out.

July 5, 2010

I want to tell you about a good day, a very good day. However it doesn’t begin well at all. I have a friend from highschool, Kym. She’s a good friend and we try to meet up every few months. She hadn’t seen me since I’d started showing symptoms and we made plans to meet for lunch.

For anyone who knows me they know that I hate cancelling plans and am rarely, rarely late. As time has gone on with my illness I have had to accept that sometimes I have to cancel on people if I’m in too much pain or just too tired, I hate it, but I do it if I have to.

Anyway, this was in January, actually the day after I was diagnosed. I had been given my new list of medication and had taken my first prednisolone 5mg tablet that morning with breakfast.

I was, exhausted. I was emotional. I was in severe pain.

I remember getting the bus into the city and walking to Town Hall steps where we’d said we’d meet. It felt like the longest walk of my life. I sat on the steps and closed my eyes. It was one of those days where I couldn’t stop the tears from sliding down my cheeks, escaping from underneath my closed eyelids.

When Kym arrived I held out my arms to get her to help me to my feet. We walked baby steps to the closest cafe and I continued to cry and tell her what I was going through.

I told her I was exhausted, that I could barely sleep because of the pain in my shoulders. I told her I could barely walk because of the ache in my hip and knees. I told her I wanted to move home to Mum and Dads because I was sick of being a burden on my flatmates. I told her how I wasn’t coping at work. I told her that I just couldn’t see how I could go on.

It wasn’t that I was suicidal. I don’t think I’ve ever reached that point, but I just honestly couldn’t see how I could face another day and all I wanted to do was go to my family home and sleep forever.

And she listened. She gave advice where she could and made the appropriate noises and let me pour my heart out. I ignored the fact that we were seated closely with other patrons and the waitress could see my blotchy, tear stained face. I had a friend.

It was quite a scorching day and after lunch I managed to drag Kym to a bar for a cider. After a few sips I remember thinking, I feel better already, must be the numbing effect of alcohol.

I headed home and sat on the lounge watching a bit of tellie. An hour must have passed and I stood up to get a drink from the kitchen. It took me a second but then I went,

“Hey! I just stood up without thinking about it.” It was a strange moment. I lifted my arms up above my head and there was barely any pain.

It had been about six hours since I took my first steroid tablet and I was blown away by how quickly and effectively it was working.

I rang my mum, I texted Kym, I sat in my lounge room in awe of the pain that had disappeared. In awe of the feeling of being ok, of feeling mobile, of almost feeling good.

Yes, the sun came out that day.


14 Responses to “…then suddenly, the sun came out.”

  1. Jenita said

    I always get shivers reading this blog, girl. I can almost physically feel the relief myself, having read this. It’s still crazy to think someone as vibrant and healthy as I remember had to go through this amount of pain. I’m so, so glad you’re better now.

    • Thanks Jenita,
      It’s weird thinking back to how awful it was. When I have a bad or painful day I have to remind myself of what it was like BD (before drugs)
      Hope you’re well

      • Jamie Sue Fisher said

        Thanks so much for sharing you life with us. This is such a weird confusing disease. Since I’m on predisone I seem to have fewer bad days. Yesterday I felt so normal & embraced it. Today was a bad day but not one of my worse. Just wonder if you have breathing problems. Ihave RA & 2 yrs ago my plattlets were dangerouly low & that’s when I was dianozed with MCTD. I didn’t believe them at first. Thought they just couldn’t think of anything else to call it but now I believe them.
        So happy for your good day & hope you have lot’s more.

      • Hi Jamie,

        Thanks for your message. Have I seen you on the Facebook group MCTD or Living Chronically Fabulous? I haven’t really had breathing problems…I get a racing heart which is pretty likely to be from the prednisone which sometimes makes me feel a little short of breath but generally my breathing is ok.
        You might be interested in my next blog entry I am about to write. I don’t know if anyone will agree with me but it’s about the guilt I sometimes feel if I have a good day. Crazy I know…I’ll explain more in the blog. I know what you mean thinking MCTD is a made up disease when they have no ideas but really…it is clear I don’t have one disease more than the other so mixed is the perfect term.
        Here’s to more good days than bad.

  2. You’re too full of life to let something like this beat you. Glad that sun is shining.

  3. Sharon Joyce said

    My Darling girl,I wish the sun would absolutely shine for you every day. You are an amazing, beautiful daughter, so much stronger than me! I am pleased that your blog is reaching others- it must help to know that there are others who know exactly what you experience. Stay strong my precious. The sun will come out again. Love you

  4. Diane said

    steroids are bad for you. i would look into antibiotic therapy for autoimmune disorders. it saved my life. no more steroids, metho or humira and i feel great.

    • Thanks Diane. Will discuss other options with my rheumatologist. Thanks for the advice. I am on a very low dose 5mg and have a plan in place to ease off it in the next few months as hopefully the plaquenil kicks in. Hope your health is going well.

  5. Carmel said

    Perhaps reading this in one go was not the smartest thing to do. I hate it that you have suffered so much more than even i realised. I am so proud of you. So much love.xoxox

    • Thanks Carms. I’m surprised you of all people didn’t know how bad I was….you were with me over Christmas and at the hospital and when I couldn’t stand up without help. Still, even if you didn’t understand, you were there for me unconditionally. Very lucky to have a sister like you. Love you. Nomes

  6. alisonmartin1 said

    Nomes, I only just read this and it made me cry. Your writing is so moving and your strength is inspirational. I hope you know how talented and impressive you are xx

  7. […] worry, things start to get better. Have you read Then Suddenly…the sun came out? Posted by naomijoyce83 Filed in Uncategorized ·Tags: chronic illness, lupus, MCTD, […]

  8. […] You may remember the miracle of a day when the drug first kicked in – you can read about it here. Now steroids can do all sorts of awful things to you long term, osteoporosis, hump back…make […]

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