The long recovery…living in the moment

Mornings are rough. Really rough. Mostly because my left side hurts…the pins and needles, the ‘waking up’ sensation and generally clumsiness and weakness. Every morning.
It is improving. But its hard to move, and my movements are jerky, and it hurts. When I open my eyes, its because pain has woken me. Sometimes its my right shoulder (rotator cuff), mostly its my left side, partially paralysed and needing to move.
It’s very different to RA pain, or injury pain, its entirely new for me. But I’m getting used to it, and I can live with it. Mostly its just my foot and my hand, with general weakness in between. Sometimes it burns icy hot and its the worst thing ever…other times its mild. But Its early days, and it should get better. Even if it never gets better than this, I can live with it. I’ve done pain for years and I can do a little more.
And it should go away. It gets better over the course of the day which has to be a good sign, it gets worse as I tire. A sign that i need to rest. It could be far worse. I’d rather have a limb that’s painful, but I can use, than no pain and no movement. It’s not as intense as the RA pain can get, but its more frustrating, in the lack of control, and motor function. Physio and time.
Yesterday I could feel the difference in strength, my power assist is dying and only kicks in sometimes. I needed the Chicklet to push me, which was very odd for us both. I couldn’t have gotten out of the house without help.
BUT…I got out for an hour. In the real world, out of this house. Big chunk of happy!
And my bloodwork was in the mailbox. It showed what I suspected, my haemoglobin is just below the ‘normal’ range now. Double what it was. So I have energy, and the dizziness is gone. Without that energy I couldn’t do anything. I was too sick. But yay for bone marrow doing its thing, and that bodes well for my kidneys as well.
Now I can walk up and down the hallway unassisted, albeit carefully. I do that a few times a day, mostly I’m still using crutches, a walking stick when I’m good, and the wheelchair when I need to. 95% of my time is spend lying down still, but I’m doing more exercise in the chair, and lying down. Have to get my muscles stronger, and it will come. Years of fitness means I am still strong. I will recover. And I will be back at gym one day. In the meantime I have everything I need here to increase my strength.
The most important thing is that I’m feeling like me again. There is a lot of stuff I can’t think about yet. I have panic attacks that come out of nowhere. Nightmares. Cold sweats. I let the feelings come…and i let them go. I’m not holding onto any of it. I’m starting to write again, and that helps. I went through major trauma, physical and emotional, and I have a lot to work through. It’s not easy, it would be easier to ignore. But I will be seeing Dr Mike the week after next. He will help.
And I will never have surgery again. Which is a big problem, because my whole plan has changed. I had intended to recover from this and do my shoulder later in the year. But not now. The pain from my shoulder is bad, and it needs surgery. It wakes me every night, and refers up into my neck. It’s impossible to get comfortable and I wrap my heated blanket around my shoulder and neck in bed. But I have to accept it, and get used to it. Keep doing physio.
It’s also a reminder that I need to lower my prednisone dose, but not yet. I’m stable right now. I’m doing pretty darn well, considering. 25mg of pred keeps my RA nice and mild to moderate. If only I could find another medication that does that. It’s a cruel irony. But all that is for later. Live in the now, just this moment. Rest, physio, repeat. And while things are still very rough, they are getting better. And I will be OK. In time. #hurtingbuthappy


  1. Baby steps. Its going to take awhile, but you will get there. I take 10mg of prednisone every 10 hours, no choice in the matter. It has distorted my face, my body (huge pred. belly. from a 28 inch waist to somewhere around 45 inches, almost over night), and even to a large degree, my self image. Personally, I think I look like the elephant man. But we take it, because (evil side effects and all) it does what its supposed to do. It works. It keeps us functioning. In my case, it keeps me breathing. For now. Hang in there. So glad you are back at home! Thought about you a lot while you were gone, hoping all was well.

    • Prednisone is evil…and prednisone is life saving. I’m sorry for all the side effects…I know what its like to look in the mirror and not recognise who you see. And then just tell yourself ‘I have no choice, there’s nothing I can do about that’ and try to put it aside. But its hard! But breathing is kinda essential, and I’m glad that prednisone exists cos its keeping you alive. To fall back on a cliche, the people who love us aren’t bothered by the outside, they see what’s within. And you’re a great person, Melissa. Always here with a kind word. Thank you and take care of you xxx


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