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12-24 months and up support group


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Hey Leann how wonderful to hear you posting the positive things you’re doing! I’m so proud of you sweetie! The diary will be an awesome game changer for you. I’m having morning dread and wave right not but your post made me smile! I just finished Maid. Yes it’s very good. That little girl is too cute especially when she sings the Salt n Peppa song “ shoop”. Too cute! Don’t worry about it being too much. It’s not very stimulating at all. You’ll love the ending.  :thumbsup: After I watched it I was inspired. Maybe when I’m healed I’ll go volunteer at a women’s shelter, teach art there or start up a shelter boutique for women and kids.

I have not read Baylissa’s book. Thanks for the suggestion. I’ll check it out.  :thumbsup:

I’ve started watching Bonfire of Destiny on Netflix. It’s pretty good! Maybe you’d like to watch it after you finish Maid. Happy Sunday my dear.

Btw, Call the midwives and Downton Abby are very good too!  :thumbsup:

 

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I finished watching Maid last night lovely ending.. I'll try the other one you mentioned. Call the midwife bit surupy for me. We went to Highclere where Downton was filmed when I was "normal it's very impressive.

Feeling ghastly again today, this rapid cycling symptoms so hard. Have booked telephone appt with GP in a months time see if there is anything I can take on really crap days. Written out a script of what happened, not ideal as I've  never seen her & you can't see them in person. But figure if by some miracle improve in meantime can always cancel.

Keeping diary is helpful, seem have couple of OK days, then awful day when I'm mess again, so seems be a pattern.

Baylissa has a free website with lot of info on it. I know she got criticised on here, but I find her ver reassuring. How is the dizzyness. Was something in our paper about thing called PoTs, That causes dizzy spells might be worth looking up?

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I’ve looked up everything Leann. I don’t really fit any of those. It’s kind of like having bits of them combined.

Hopefully your doctor can help you.

I’m more boaty than anything and can’t tolerate standing up, I do have dizziness but it’s off and on.

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Hi Everyone!!  I love hearing about everyone's challenges and how they cope.  Thank you all for sharing!

 

And thanks LadyDen for asking how I'm doing.  I just read Leann's post about starting a diet and then feeling off again.  That's interesting because I have been doing better and frustrated about the 15 pounds I've gained, so I decided to try intermittent fasting again.  I did quite well a few years back and only did something like 12-14 hours fasting and 10-12 hours eating.  Well I started about 5 days ago just trying to not start my eating window until about 8-8:30am, whereas I had been eating as soon as I got up no matter what time that was.  Well I have to say that I've had an uptick in symptoms these last few days, not terrible, but my nerve pain has definitely increased again! I do recall that IF does signal a stress in the body which is why it works metabolically.  Leann I would think any kind of dieting induces stress.  I guess purposely creating any kind of stress is not a good idea in our condition  :(

 

Also, I have had a good little stress in my life. On Wed nite I picked up my first tiny kitten foster.  His name is Atlas and he is just 3 weeks old and a single orphan kitty.  He's the most adorable fuzzy little life I've ever had  :smitten:  He does need more attention than I've been giving anything or anyone so he has disrupted my routine a bit, and perhaps that is adding to my uptick in Sx.  But he's a great loving distraction.

 

I'm thinking of getting the flu shot - I skipped it last year, so I guess we'll see how that goes.  I'm expecting a bit of misery then hopefully back to baseline before long.

 

I hope everyone is hanging in there and that we all soon see enough healing to make a positive difference going forward!!!

 

 

 

 

 

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I’ve looked up everything Leann. I don’t really fit any of those. It’s kind of like having bits of them combined.

Hopefully your doctor can help you.

I’m more boaty than anything and can’t tolerate standing up, I do have dizziness but it’s off and on.

 

 

Says this is very often missed. It's if you feel swimmy headed when getting up from lying down , they measure difference in you heart rate, blood pressure, if it varies lot could be PoTs. But guess you've already had that done. Say can cause brain fog, people can't walk very far. Was just a thought.

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Hugs Deanna awwww a cute kitty so sweet. I really like the name Atlas. Adorable! I’m sure he’ll bring you many smiles and comfort on your tough days. Wonderful to hear from you. I’m still recovering from my hard slam a little over a week ago. I’m improving slowly.

Hugs to all and hope your weekend was good. My New Orleans Saints won on Sunday!!!! Woooohooo

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Hi All

 

Hope you all are doing good.  Well 26 months off.  Sleep is okay with occasional off day.  Handful of physical sx that come and go.  My mental stuff does too.  A lot of stress doing my best.  Anyone have any advice on this obsessive behavior?  Seems to cause a lot of it .  Lots of positive vibes and prayers!

 

U

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Hey Upper! 26 months by itself is an awesome display of the warrior you are. Congrats!

As far as obsessive behavior how about you try a scheduled day each day until that symptom goes away. What I mean is write out a schedule for your day in detail then stick to it strictly. For example…

7- 8am brush teeth, comb hair, get dressed, make the bed

8am -9am make breakfast and eat breakfast wash my dishes

9-10am tidy up the living room ( straighten pillows, dust, sweep, mop etc)

10-12 do laundry with in between cycles working on a crossword puzzle

12-1 prepare lunch eat lunch wash dishes then wipe down your cabinets

1-2 go outside for a nice walk taking your time to look at trees, look for birds, etc

2-3 lay down to meditate and write in a journal about things that bring you joy or things you want to learn

And so on and so on allowing certain things at certain times until bedtime. This will disrupt the obsessive or fixated behavior. So in other words it gives your mind a sense of direction to complete tasks. The idea is to keep it occupied so it doesn’t have the space to become OCD. I know it works with kids. Maybe it will help you.  :thumbsup:

When you see it becoming obsessed then confront the thoughts immediately by saying “ Nope! We’re washing dishes right now.” Or whatever you’re scheduled to be doing. This helped me a lot to get through each day!

Best wishes and hugs

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Hi All

 

Hope you all are doing good.  Well 26 months off.  Sleep is okay with occasional off day.  Handful of physical sx that come and go.  My mental stuff does too.  A lot of stress doing my best.  Anyone have any advice on this obsessive behavior?  Seems to cause a lot of it .  Lots of positive vibes and prayers!

 

U

 

 

 

 

 

 

 

I have really bad intrusive thoughts rather than behaviour. Only thing I find helps is anything that requires a lot of concentration, you have really think about. Doing a complicated tapestry at moment, done lot knitting crafty stuff. Not sure what gender you are, if you are male , DIY stuff maybe. If you have patience jigsaws anything requires you to really think about what you are doing. Going through really bad wave at moment I'm 31 months off , see you are on Gabapeptin has it helped at all? Stress also makes it worse, but difficult to avoid at times I know.

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Winter one with holly, snowdrops, berries. Not doing very well. Written to my GP am considering doing a temporary reinstatement then do a proper taper off, as I never had any problems on zopiclone. See how it goes. How is the dizzyness?
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Hi Leann, I'm sorry you are still going through so much this far off.  I am just wondering if you have given any attention to your nutrition and gut health.  I found it is a major piece of the recovery puzzle.  If I veer off my diet very far I feel it.  I personally think what we eat determines our microbiome and the microbiota diversity have a lot to do with our neurotransmitters and inflammation and so much more.  I wish I could help you so much  :smitten:
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leann, what is your tapestry done as?  Cross stitch-counted, or is the fabric already imprinted with the design, crewel, etc.  I used to do all of those before I got so sick.
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Hope you are all doing well, I'll drop out fir a while, in a very dark place, feeling worse than I did year ago. Even thinking trying anti psychotic, this just feels like brain damage, seriously thinking this is going be permanent, mental symptoms are hardest thing to deal with.
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Hugs Leann I hope that if you take a short break that you spend it working on the tapestry. I bet it will turn out pretty. If I could hold my head down for any good amount of time, I’d certainly start back using my sewing machine. I loved making clothes for little girls. I have two little cutie pie granddaughters that I’d love to make clothes for. Hopefully soon I’ll be healed or receive a big chunk of healing so I can do things like that.

If you decide to take a break, I understand and you’ll be missed.

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Hey Becks dear! I didn’t know you used to cross stitch. I did a bit of that a long time ago. I used patterns already there as well as blank fabric to make my own. I still have some of those things left. Maybe I start doing them again when I can sit up again. What do you think about starting to do yours again too?
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Hope you are all doing well, I'll drop out fir a while, in a very dark place, feeling worse than I did year ago. Even thinking trying anti psychotic, this just feels like brain damage, seriously thinking this is going be permanent, mental symptoms are hardest thing to deal with.

 

Love to you Leann and praying for you as well  :'(

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I have the most difficult counted cross stitch kit.  It's a Thomas Kinkade called "Clearing Storms."  It has about 50 different colors including irridescent floss.  The stitches are so small that you need magnifier glasses to do it.  I started it and put it away in a container in the back room.  No way will I be able to finish it now with my cognitive problems.  I'm too sick and can barely see anymore.  It'll never get done.  When I die, I willed it to my sister to complete. 
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Hugs Deanna how are you doing? Any new changes?

Becks I love Thomas Kincaid art scenes. They’re beautiful. What a pity they made those stitches too small. Even if you don’t have problems that is nerve wrecking to do all those stitches. But I bet when finished it’s gorgeous. Maybe you can get blank fabric and make your own pattern with the stitches as big as you want. I’ve seen some of those and they’re nice. Maybe do one of a cat. It might help you not feel so bad. Just a thought. If not maybe you can make jewelry. It doesn’t require much thinking.

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The squares on the Thomas Kinkade counted cross stitch canvas are supposed to be that small.  I think it's 14-pt., but not sure. I used to make jewelry years ago for a company.  My cognitive functioning is so bad now that I cannot even do the simplest of things; I even burn my dinner many nights and I cook the same foods all the time.  I was diagnosed with Memory Impairment and Amnesia a few years ago and have dementia now.  No one knows how mentally impaired I am now.  It's very bad.  My depression is very severe too.  I have no interest in doing any hobbies anymore. 
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Am sorry Becks that you’re still suffering the effects of your illness and benzo damage. I was just trying to think of something that was easy for you to enjoy again. Big hugs to you my dear
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Hey Lady, I was over on the Z thread opining about my gluten issues lol.

 

I was thinking .....and thinking...and I was sort of in that half-sleep state in the middle of the night, when I had a thought about all our sensitivities.  Some of us (like me) are sensitive to 99% of things we try to help ourselves.  Maybe we aren't really sensitive to the things we consume, but rather just sensitive to the change in the body that these things cause.  So I guess I am postulating that what we are feeling is the effects of the change in homeostasis.  Normal people just absorb the changes with no physical manifestations or perception of the subtle changes.  But we are so so sensitive neurologically, that we feel it.

 

So I've come up with a plan for when I want to try something:  try  only a tiny amount and no more frequently than every 2-3 days.  Maybe trying something new again each day is just too much.

 

Any thoughts???

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What you said makes sense. Homeostasis is off so little things are felt easily.

Yes I think you can try very small things again to see how it affects you. I’d suggest doing one thing at a time. So if it still revs you up then you’ll know the culprit. But at some point we have to test things out to see where we are.

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Hello all.  I am also going to hop on the sensitivity trial and error train, as I also seem to react negatively to many different foods and medicines.  I definitely know that sugar impacts me.....had a small sundae a few days ago and within a day or so, my GI symptoms flared up, followed now by an allergy/sinus infection.  As of today no antibiotics needed as GP said all blood work showed no bacterial infection, just pressure in my left ear.  So, this lovely Northern Virginia Sunday has me looking longingly out my window at the beautiful fall colors, while I am stuck inside with ear pressure, headache, and awful GI issues.

 

I am now at nineteen months and looking forward to symptoms boogieing on outta here!  I am sure you all feel the same!

 

Hugs,

 

GG

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