Hi, I haven't been around for a while things are all changing for me and I feel really unsettled. It all started last November when I saw my Rhuematoid nurse and asked if I could stay on steroids for ever as I felt alive. Sadly as I knew was the case the answer was no. But after a discussion we decided that actually the methotrexate and tocilzumab injections weren't working, as I wasn't able to get up, I didn't want to take part in life, I was exhausted, in pain and swollen. So I had to wait to see the consultant to decide what we where going to do next. My nurse arranged x-rays and scans on my hands and feet, I had my knees and hips done earlier in the year.
Last Thursday I finally got to see my consultant and have decided I have tried many of the biologics that we would go a different way. So hence I have started on leflunomide,
I feel sick but not feeling any benefits yet! I know I am impatient , I am waiting for my methotrexate injections this is new as I have been on the tablets for 20+ years.
Then on top of that I have had my DLA to PIP letter and awaiting the form to fill in, so I am feeling like I want to scream. I try my best everyday, but I hate people knowing what I can't manage to do, no I hate showing what I can't do (yes true denial) my daughter and husband have to do so much for me. I feel completely useless. And then there is the fallout if I don't get the benefits, as I lose my car and the small amount of money I call my own! Let's me have the right to buy something new, don't get me wrong my husband does not mind me getting things but I feel bad that I don't work and earn my own money.
My life is upside down now, I don't know what to do for me how to get through all this stress and upset.