Scared of My Meds!

I was dizzy while lying down. It felt as if I was rolling off the bed! It was CREEPY! I turned on the light, wanted to get up to get my pain meds and oh my word, the room was spinning. And I have a heavy feeling in my head. Middle of my skull. I was so scared I even shouted out for my husband who was in the closet area eating before going to work. I was really scared guys. It lasted for too long and was so severe! I thought I’d need to go to hospital. He had that kind of dizziness when his kidneys were failing.

I read that Salazopyrin causes dizziness but the advice is, “Don’t drive, don’t operate heavy machinery and sit till it passes.” What I have experienced was worse than what seems to be something so trivially written of. My head still feels wrong. I’m still shaky. And I don’t know that it IS the salazopyrin. Add the kidney effects it has to my already not good kidney function and you have one very worried patient.

I don’t think I’ll take any today. Which means even more pain than ever. Things have steadily progressed while I wait for the next biologic. Went to church and someone who just greeted me only, wrote to say I looked tired, and asked if I’ve begun the Cosentyx. Needless to say, that made me happy and sad. For someone to understand that it’s linked is cool! Better than any concern and care, deeper and … Nobody in my family ever cared even when I told them I was about to switch off for surgery. They never asked thereafter how the surgery went. They don’t know anything about my current trials and tribulations because they wouldn’t help any. So it means a lot that someone gets this stupid diseases!🥹Also, the pain was horrendous. My knee, back, shoulders, neck… It was all over, but the knee and back were the worst. And when I got up to leave, having taken a short break and stood up before sitting down again, I couldn’t help but limp. My body didn’t like sitting for those few minutes! I limped down the stairs where I came across someone coming into church who asked why I’m limping. I can’t explain AS… He was a funny Malawian man. Funny because he speaks his mind and sometimes his mind is crazy. But he always shows concern. But nobody gets AS. None of the other Malawi people I’ve mentioned it to, so I just told him I was in pain.

Ammy, poor nine year old Amarissa was so scared I’d fall down the stairs that she even told me to hold onto the rail.

My sweet boy said, “I’m so glad you joined us, Mommy,” as we drove home. I wasn’t. I regretted having tried! But I am happy he felt happy.🥰

I’ve never suffered this much after such a short period spent seated. (Ok, the drive to that church is longer than the distance to my other appointments but still…)

And the breathing. The toilets are down some stairs. Stepping was painful. Walking up left me struggling to breathe. Singing hymns, I struggled for the first time ever. I kept telling myself, “They must be singing very slowly. That’s why I can’t hold the notes. It’s not me, it’s them. Because if it’s me, I’m in big trouble!”

All this led me to email the rheumatologist again. I need to try Cosentyx. I need to slow down what’s going on in this body of mine. I’m now really scared. Yesterday was our usual grocery day. I wanted to cry from pain. I wanted to weep in frustration. My legs didn’t want to move. It’s like my pelvis was freezing up on me and my husband kept having to slow down. This is me! The one who he used to say was “racing ahead.” Now he has to slow down for me.

I feel nauseous. I feel sick. I feel sad. And I’m waiting for plumbers as we have leaking pipes in two different areas IN OUR WALLS!! I just want to try lie down. I want to be comfortable – which is not really presentable for strange men. We can’t do bras. We can’t do clothing, really. I’m not teaching school today unless a miracle happens in the next two hours.

I’m in pain but scared to take any pain med in case it’s the cause of this attack. But not taking it will be bad. Look at Sabbath. I had taken one and the Salazopyrin but was visibly struggling.

What a mess. I hate AS. And my fingers are becoming more painful as the hours pass. Sorting laundry – ouch. I just want to lie down with a hot water bottle in my hands. The number of times I’ve had to erase cos they don’t want to type properly. Ahhh!