So last night when I couldn't sleep I spent an hour and a half tapping away at a blog post and then when I published it ... poof gone! So I'm going to try and recreate it now with tonight added in.
Last night the post was called Sjogrens sucks and it does! My fatigue and pain are bad at the moment and no amount of pills or creams help. So I'm in flare I guess. I hobble around during the day like a bloody 90 year old and I haven't even botheted trying to go to bed yet tonight. Hmm, so then I wrote about all the people affected by this disease. There are so many of us around the world feeling how I feel. In many cases it is worse and this is something I dread. And then all the people around us that are affected. The guilt about the things I can't or won't do any more, for me, can sometimes be unbearable. Then I turned to prayer. Praying, as I do sometimes, not sure who or what to but praying for strength and courage. For myself and for the others with Sjogrens. For those that care about me and them. And for anyone who needs a prayer. On to things that make me happy. My family, friends and my work. My little shack that I call home. My Zoe girl. Our beautiful new bedroom. And my thoughts then turn to memories and I smile and sometimes chuckle at the things I remember. My Nanna Berry who I miss and think about every day. The first time she met Anthony when we made a surprise visit. Lucky we didn't give her a heart attack on the spot! My wedding day, child-birth, our trip to America last year, caravanning as a child. So so many great memories. Last night I listened to the bugs and the birds in the darkness of late night. Tonight it's a bit eatlier so I listen to the tumble of the dryer and a possum in the tree ... Anth brushing his teeth, the washing machine and Zoe barking at nothing! So despite sucky Sjogrens I feel like I have been blessed with so many things. I feel so supported by so many people, thank you. Thank you so much to my family, friends and team-mates at work. You know who you all are because you will be the ones reading this. And now everyone has gone to bed I will sit in the darkness, nearly silent except for the bugs and the birds ... and the possum. Wait, make that possums. Soon I will try to sleep. Keep smiling Sjogrens Jo :)
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Been terribly itchy now for about a week. Everywhere. My back is starting to rash up again for the first time since diagnosed. That could be the Lupus rather than the Sjogrens.
Aching big time at the moment. Pain killers not doing anything at all. Hot flushes very regular now. Probably menapause! And dry, very dry. I can feel the inflamation. Stiff joints. Weakness. Rant over. Goodnight, Sjogrens Jo. I started this post a week ago but was too tired to do it. It's called dance because I was feeling really good at work and had a little jig at the Harmony Day lunch. whoe bad move, really really sore and fatigued for days. Anyways, all good now. Not aching tonight which I can only presume is due to an increase in supplements and strong meds. Brain just wont settle down. Bedroom renovation is AWESOME! Here are some pics. Well that is all from me.
Keep smiling Sjogrens Jo :) Thanks for your kind words and thoughts Eddie. We are not alone!
Lately I have been very busy with work and home restumping. A few other stresses as well. I look like I've been dragged through the bushea backwards and feel like I've been hit by a truck! I had a shocking migraine 2 nights ago and now really weak. Catching up with some fellow stoggies for lunch tomorrow and really looking forward to it. Keep smiling Sjogrens Jo :) Dark night
Sleep tight Not me Up I be My legs My arms My ankles My knees My shoulders My back My head My mustles My joints Aching, Sore Please, No more Dry mouth Dry eyes Dry nose Dry ears Dry skin Dry everything Itchy scalp Sore lips Crawly feeling Sanity leaving Rest and rock Swaying tick tock Ouch my legs are aching like crazy. So is everything else for that matter. Ankles are stinging and knees stiff. Just starting to rain and I'm sitting gently rocking trying to ease the pain.
Had a very busy weekend with the re-stumping of the house completed now working on tidying up, making some internal improvements and putting things back together again. Went to the Victorian 4WD Show today, lots of walking. A side note from me, lately I'm getting sick of all the haters and moaners. Carrying on about stupid things, wasting time bitching and complaining. Do something positive instead. Now I'm moaning about moaners! Here are some positive things:
Too tired, gotta go. Keep smiling, Sjogrens Jo :) Damn these aching legs keeping me up again. The past week they have been pretty good, dull and bearable but tonight grrrr.
Staying at my parents while the house is re-stumped. We are having a good laugh with me learning the "rules." Can't thank my family enough ror their support. Feel so lucky. Having some fun snap chatting with John :) Working hard and watching MKR. Up to date with all episodes of Grace and Frankie. Zoe is loving her freedom here with lots of grass to roll in but deaf as a door knob! lol good night god bless sleep tight peaceful rest I'll wait outside my turn will arrive soon I hope in bed I'll be when I can cope just Zoe and me Missing you my honeybun xxx Night all, Sjogrens Jo :) Heavy rain
comforts me through the pain nothing to see Too tired to work too sore to sleep thoughts they lurk tried counting sheep A busy day more to come cannot lay aching won My mind wont rest the pain doesn't stop I do my best until I flop Give me strength in body and mind to go the length stamina must find So here I go again, another night of sitting and waiting till the time is right for bed. My legs and head ache. There is so much I could be doing right now. My joints hurt, especialky my ankles. But I just have to sit and try not to grit my teeth. Just want to sleep. Good night to all reading this, sweet dreams to you and to me when I get there! Keep smiling, Sjogrens Jo :) My apologies for no blogs lately. I have been crazy busy! Alas, as per usual, here I am feeling totally exhausted and achey when I just want to be asleep. It's 10.30 pm.
I really don't even know what to write any more as it's more of the same day after day. My nephew has been staying with us the last couple of days. He is 9. Loving it but boy is he a chatterbox! We have been preparing the house for restumping. I've been working a lot. Too tired, gotta go. Keep smiling Sjogrens Jo. Sometimes I just get soooo frusterated! That's why I say don't get me wrong. I am very happy, had a wonderful xmas and new years. My family are terrific, especially hubby, John, he does so much for me and I really appreciate it.
Sometimes though I just get sick to death of having to make decisions that normal people don't think twice about. Like deciding whether or not to have a shower. Jeezus it takes so much friggen energy. Two days ago around 9 pm I got a sudden migraine with vomoting. I was in bloody agony so went to the hospital. Thank you sooo much Gidg and Anth for taking me and John for staying with me. So grateful that I was admitted atraight away. Fluids and pain relief and released at 4 am. spent all next day in bed. Booked in to a gong bath in Feb. Looking forward to it. Just had a nice hot spa which really helps with the body ache. Bye for now Sjogrens Jo PS Keep smiling :) |
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