Let's look for one every day.
365: Let's look for one every day. - PMRGCAuk
365
Written by
Kendrew
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13 Replies
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I love this idea but struggling today. Maybe my opportunity is to do nothing for once.
Happy New Year
Really sorry to hear that Coffeebeans. I know we all have days or periods of time when we just don't feel positive, upbeat or like we can conquer the world, and that's ok. Sometimes it's important to just be still....rest and ponder on the things that are maybe troubling or hindering us at the time......whether those 'things' are physical, emotional, spiritual or mental. Maybe you've grabbed today's opportunity by letting us know you're "struggling today"......you know that anyone on here who sees that will be straight in to try and lift you up again and offer you some support to get you through. Sending love and thinking of you.
Oh it's a mix of everything.
Physical - banging headache (not alcohol related) for three days. I get them slot when fiddling with dose. Racing heart, anxiety (always when feeling more pain) very down in the dumps.
I spent new year alone because I was so very tired. So tired I was asleep by 930. That totally exhausted I could only cry kind of tired.
I'm holding out for rheumatology to come through with a diagnosis and way forward. I cannot carry on like this. I can't stay on this level of pred, it affects my mental health too much. I literally don't know what to do to feel better.
Thank you for your kind words. I really appreciate it because it's really only other sufferers who get it.
I really do understand all that frustration that comes from not feeling in control. You don't say what dose of pred you're on, but I battle with the pred constantly too and headaches, palpitations and fatigue seem to be a common issue. It seems from what you said that you haven't had a conclusive diagnosis yet? What have you been prescribed the steroids for? When so many hurdles come your way at the same time, it can feel completely overwhelming, but this will get better and things will get sorted. If you can determine the cause of your pain and alleviate that, your anxiety levels will improve which in turn will aid more restful sleep. I wish I could offer more constructive help but I'm sure others will be able to. In the meantime perhaps just go with your body. If you need to rest....rest. if you need to sleep....sleep. Please don't feel alone in all this because you're not. I don't think there'll be one member of this community who won't understand and be able to sympathise with how you're feeling today. Holding your hand.😘
Just read your profile and understand the confusion now over diagnosis. Definitely helps to know what's actually wrong and have a reliable diagnosis. You'll get there but I know it's frustrating and can leave you feeling very weary.
Yes, being treated as per PMR for the last year but asked for a second opinion in December - gut feeling really.
I'm just so tired and just want my old self back. Not going to happen though. Fingers crossed for a better year.
I know that feeling too. Where have 'I' gone?? Xx
Hi Coffee beans, love that moniker... So sorry to read your posts and what a real rubbish way to start a new year. I think the lovely Kendrew has said pretty much all and, that difficult though it is sometimes we just have to go with the flow of what our body is telling us. Probably the hardest thing for many of us is coming to the acceptance that for the moment we can't have our old life back, it will happen eventually but will take a while. I was lucky not to be alone last night but was still in bed before 10:00 o'clock, pretty much the same as most nights. I'm up around 2:00 in the morning for my Pred as I find that seems to work well for me. We, also have many contributors from afar who are around at that time of day/night, so if/when you feel down and need a chat/rant there will always be someone here to listen and chat (not sure that's the right word but you know what I mean). I've got my fingers crossed at the moment as I'm down to 11mg of Pred and last time there I failed miserably and had to go back to 15mg, so far so good but have to admit to feeling pretty cr.. the last three days. Hopefully your Rheumy will soon be able to come up with a good diagnosis so that you can feel more in control again. I've prattled on enough. Take care, stay safe and all the best for, hopefully, a much improved year.
Thankyou both. Exactly what I needed. It won't last forever this feeling.
I'm going to set an alarm to get the pred in early from today. It's been slipping back to 8am which is too late.
Bcol - best of luck with this latest taper. Its a great feeling when it goes well isn't it.
Love your positive post!!! Upwards and onwards 🥰👍x
So true! Just have to look for them even on the bad days. X💐
