Going Batty

I'm coming down off my prednisone taper, and my knuckles all look bruised again. They're hot and frustrating, as are my wrists, knees, and elbows. I'm having trouble leaving the house. I think the anticipation of pain is making me anxious, if that makes any sense. It's +30 out and has been forever. We're supposed to get some cooler weather starting tomorrow, mid-to-high 20's. I'm just so tired of this I can hardly stand it. I'm not sleeping well, which lowers my seizure threshold, so I had a small one this afternoon. I'm so very tired of all this stuff. Siiigh.


8 Replies

  • Hugs darling,i sure hope that the weather soon cools down for you so you can feel brighter darling.xxx

  • I can just imagine what that heat must be like, but even imagined, it's intolerable. I do hope the slight drop in temperature will bring some relief. I can really empathise with the horror of tapering. I was trying to do that, but had to go up to 10mg again - just to get out of bed, and to swallow, and use the loo. Hugs are rather hot and painful, but cooled by the Atlantic, they should be OK. Jo xxx

  • That kind of heat must be unbearable - especially when there's no let up.

    As usual it's the opposite here and even with sunshine and showers there's been very little warmth out of the sun here this year. 2 days of heavy wind have just flattened some of the taller plants such as foxgloves. I've been feeling fed up about this lack of real warmth but reading your post makes me positively applaud it!

    Re the Pred taper and the small seizure - I'm tapering too and had a stroke like event for second time in a few months last week so I can relate a bit - although nothing as awful as you are going through.

    I'm down to 3.5mg now and was up for most of the night with severe burning pain in my limbs- especially feet, ankles and knees. Going to get my dressing changed in 30 mins and then see man GP for double apt straight afterwards. Dread.

    Can't really recall what I wanted to speak to him about now as I'm too tired to think - lack of sleep accounts for such a lot of negativity I find. But I haven't had a swollen, bruised looking knuckle for a few years now for which I'm very thankful at least - although it would help me to believe my pain is real.

    As it is I just have to rely on my rapidly rising ESR - currently back up at 62 from 18 six weeks ago - for reassurance that I'm not just imagining this huge but invisible increase in pain.

    That's what I want to speak to GP about - to get a Prednisolone plan worked out and sufficient amounts of pills to last me through a relocation. That's before I've mentioned the suggestion people keep making of suing the health board for all its put me through. Think I'll keep quiet scout this until I'm registered somewhere else though or may not get my supply of Pred!

    Meanwhile blowing some cool Scottish mist and heathery sunshine across the Atlantic to you right now as I get myself ready to totter dizzily down the lane to see doctor Kildare (well on a good day!).


  • lack of sleep dumps my mood, too. Good luck with the gp, and if you're not going to sue at least let me come slap some people for you? Grrrr. I'm much fiercer than I look. Honest. Mmmm Scottish mist and heathery sunshine sound delicious. I must come visit :)

  • I can understand just how you feel Bats, it was my life each summer for 11 years & then the humidity, wow! People say my joints must have been much better living in the sun but they didn't or rather couldn't understand it's as bad as cold damp. Living in a house without air con wasn't pleasant but neither would have been living in one with it as the changes in temp coming in or going out is extreme!! Shopping in the summer was a real problem too, out of the heat into air con'd shops sent things haywire!! I didn't have to cope with the worry of seizures though, that must be awful for you & I hope the weather starts cooling for that as well as to ease the pain in your joints. Big hugs. x

  • ye, yes, yes!! I wouldn't survive without the AC but it isn't kind to me, either. It has been a much cooler day today, but the rain is settling in so my hands are turning into little pink balloons. *shaking head* Some days it's laugh or cry, but today I can manage a laugh for the absurdity. My seizure was quite small, and I had another one today. I think it's related to my non-eating pattern, low blood sugars always drop my seizure threshold. I will try to do better. It helps if I have lots of fresh fruit and veggies in the house, because at least then I snack when I think of it instead of not bothering. Big hugs back! xx

  • Take care and breath. You can do it!!!

  • My mood is better for some exercise today, but thank you so much for the reminder and encouragement. :)

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