My steroids have now entirely worn off. All I have right now is Codiene to try and dull the pain, and it's really not working. I do have tramadol but the side effects are too much to use it consistently. My biggest issue is my back pain. I've had constant pain around the sacroilliac joints aswell as an increasing stiffness in my neck and upper back, severely limiting my flexibility and general movement. Emotionally, I'm at a very low point...
Right now, my back pain is almost too much too handle. Had I not had stuff to pick up yesterday at work, I'd have phoned in sick. I am physically struggling to get out of bed in the mornings. I never thought I would be this disabled. I can barely get out of bed without assistance in the morning. I'm almost ashamed to say that my boyfriend had to physically lift me up so I could get out of bed. On Sunday this came too pretty much an all time low. I was barely able to get myself out of bed again, I can't sit up or roll either direction without significant pain. I was also on my period, so I'll admit I was already rather emotional. My boyfriend who was staying at the time decided to go home for breakfast. It was something so simple that I shouldn't have normally been bothered about, but on Sunday it just set me off. I thought I was mad at him for wanting to leave and not stay and have lunch with me, but I was really mad with myself.
After much screaming at him and blaming him for not wanting to stay with me, we got to the real
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| My wonderful boyfriend Andrew and I :) |
It pains me to admit how emotionally low and physically sore I am. I don't enjoy it. I'll probably tell people I'm okay if they ask, even though it's not true. I don't want to advertise these feelings because I don't want people to feel that have to help me or look after me, that I'm not capable of doing things anymore. I don't want my boyfriend to have to spend the rest of his life taking care of his ill girlfriend. I want him to spend time with me because he wants to, not because he feels obligated too and I know he doesn't and he tells me over and over again that he does it because he loves me. And I love that, but I still feel that I want to be strong so he doesn't have to do it. And some days, increasingly more so, it's taking its toll and I'm struggling to do so.
That is the reason this is feeling like the longest week of my life. I don't know if I will respond to the treatment, I don't know if it will work. But it's this limbo of physical and emotional pain for a week before I even start that's really making me struggle. Having a chronic illness is a struggle. Some days I have good days, where it doesn't look like there is anything wrong with me. I can walk reasonable well, go out to the pub, have a laugh. But following them will always be days where I can't get out of bed, I can't put my coat on without pain, I can't look over my shoulder. Days where I feel like I'm a constant burden because my boyfriend has to help me up or walk the dog for me because I just can't and the emotional pain of that can get you down just as much as the physical pain.
It's not all doom and gloom though. I had a little fight with my boyfriend but we're fine. I cried, we cuddled, he still loves me just as much as ever. It's only another week to go until I start my treatment, the longest week of my life.
Robyn xx
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