☼ Hello. mammaP checking in!

[btdt]

" I love early mornings but only get to enjoy them as I am going off to bed in summer    "

this cracked me up... it is not even that funny is it ...only to me or am I losing it... I am the same way

what kind of a wild ride is this what we can make up our own lines and other people think it is really funny where any 

normal sort person would not get it at all.  

 

Maybe we need a town or province or state for all of us where we can live with some normalcy where people got to bed shortly after dawn... are up to shop or talk late at night or work even when they feel well enough to. 

I wonder maybe we would need our own country..... 

who would we elect to run it or should we have a co op... 

Sorry Mamma I did not finish reading your post but I have decided I have had enough of this site for tonight... I hope your doing ok... I wish you peace as always.  thanks for the laugh

[EternalOptimist]

MP. Hi again. I so appreciate your comment about friends not calling and taking it personally. I reminded myself about the four agreements one of them being don't take anything personally. I wasn't highly convinced til I read your post and feel far more supported in that stance. Last couple of days, especially mornings, been feeling depressed again and Physically symptomatic, all goes hand-in-hand, but I'm catching myself having a lot of negative thoughts , stinking thinking. For instance, looking for all the negative experiences in my life and making it all about me. Good to have this form here, so appreciate it, thank you.

It's amazing what you're capable of accomplishing in spite of how you're feeling.

Thanks for referring to the CBT info on another forum.

Signing off with "my brain it's healing no matter how I'm feeling!"

Best

[Nikki]

EO...

 

The Four Agreements...one of my favorite books

[EternalOptimist]

Hey Nikki. Yeah, it's a great book. :-)

Sorry for the double post, I tried to delete one. I don't know what happened, its morning, what can I say ha ha

[EternalOptimist]

Hi MP.

I've searched twice in the forum you mentioned above re: CBT and can't find anything tho I know it's somewhere, I once saw it.

Can/would you be willing to direct me?  thanks.
Best

[mammaP]

Hi MP.

I've searched twice in the forum you mentioned above re: CBT and can't find anything tho I know it's somewhere, I once saw it.

Can/would you be willing to direct me?  thanks.

Best

Here's a link to the site EO.  http://llttf.com/index.php   

 

I am certainly paying for Sunday's loo cleaning! Don't regret it though. One day I will be able to do things without 

being wiped out for days after, but for now it is what it is and I will get on with it. Still ok though, exhausted but ok with it.

Spent yesterday in and out of bed all day and today I am just resting up because I have my hospital appointment tomorrow.

[EternalOptimist]

Thanks MP.

Good u r not regretting your recent cleaning tho u r paying for it. I know that feeling. When in the severe wave, I remember what I got done which makes me hopeful. I'm not at "ok" with it yet. Still awfully raw,esp in the morning, like now, must be easier for you to rest these days? Did you feel, at one time, that you'd never get better like others do? Wonder if this is odd or common.

Good luck at hospital today.

Best,

EO

[mattinsmom]

Prayers travel with you today

[mammaP]

My appointment didn't happen today. I booked it online but when I turned up there was

No record of the booking! We went through mistakes I could have made but I had not made any

Of them. It was obviously a software problem and it 'forgot' to tell the hospital !

Now have a new appointment in 2 weeks but after psyching myself up and being so nervous

I was not happy but have calmed down now.

[EternalOptimist]

Oh, to put so much energy to prepare for the appt only for it not to happen due to computer glitch sounds stressful and hugely disappointing. I'm sorry you went thru that. Good that you've calmed down now. Might the next attempt be a tad easier given you went thru this dry run? Wishing you good sleep.

[mammaP]

I'm back from my convention and completely exhausted.  I have picked up a virus and feel 

dreadful. It was amazing though, hard work but amazing! 

 

My head feels like it is going to explode and I am freezing cold/ burning up simultaneously,

along with pain in places I didn't know existed so not up to much but will be back here very soon. 

 

I have a new appointment at the hospital for next week so hopefully that will go better than the 

last. 

 

Away to bed for some much needed sleep, night night everyone. 

 

[mattinsmom]

I. AM. SO. PROUD. OF. YOU!

[mammaP]

Thank you Amy, proud of you too, we've come a long way the last few months! 

 

After a few really bad days and feeling like it would never end (again) , I've felt much better today.

I paid the price for a hectic week and felt really ill. Today felt a bit better when I got up but still

washed out. Was planning on going out but felt weak and when I saw myself in the mirror I was

very pale and drawn so I decided to just do whatever I felt like doing, and if it was nothing then I

would do nothing!  It was a lovely sunny day so I took a huge trunk out into the garden and painted it.

It took forever because my arm was aching but got it done eventually and I'm really pleased with it.

Also pleased that I felt motivated to do it  . 

 

I need to learn to pace myself and not go bananas when I'm feeling better, then crashing because I've

done too much.  This old dog needs to learn new tricks.

[mammaP]

Feeling very low today. Had my appointment yesterday with the orthopaedic

surgeon. He was baffled by the damage that was caused when I had my hip

replaced and offered yet another theory. Every doctor has a different

explanation and they are all convinced they are right. He was very

Interested though which made a refreshing change! He didn't have access

to my records so didn't know anything about the changes in the bone.

So we are starting again with new scans and x rays. Ct and bone scans.

He's never seen a case like mine. :-\

 

It is so frustrating because I want to do so much, and physically can do

ver little. My arthritis has flared up and is really painful, I am tired

and fed up with it all. I am crying, but that is not bad thing really. It

means I am feeling! Right now I'm not sure which is worse, feeling nothing

and floating through each day doing nothing, without caring about anything,

or feeling emotions, wanting to do things and not able. The motivation is

there sometimes but my body won't respond. Or my brain shuts down and I can't

think or concentrate I am so tired. I often say that I will cope with any amount

of pain if my head is clear. Today I am sick of the pain and just want to

be rid of it. It would be nice if there was something I could take but all

those psych drugs have really messed me up so I can't take anything at all

without side effects.

 

I am one grumpy old lady today!

[andy]

heres a *hug* hope you feel better soon

[mammaP]

heres a *hug* hope you feel better soon

Thanks for the hug Andy, it is much appreciated  .  Feeling a bit better today, not as grumpy. Sometimes

I am a bit embarrassed when I read my whinging posts after a day or two  ! 

I really do need to learn not to do too much when I have a window, physically it takes it's toll afterwards and 

I might say it was worth it at the time, a few days later I am saying something completely different  .

 

I was at my daughters for a couple of days while I was feeling rough.  My littlest grandson sat on my lap and

said "I like you Grandma"  A real honour to get that from him, then today the older one said "I miss you when

you aren't here"     Little ones are amazing! 

[Petunia]

I'm glad you are feeling better MammaP.  I miss you when you're not here

 

Whinging posts are good, helps us all feel not so bad about our bad days and needing to vent, complain and reach out for support.  It inspires me the way you go through a bad patch and then bounce right back.  Of course I wish you didn't have to go through the low days, but the fact that when you do, you admit it and write about it is helpful.

 

Here is a ((hug)) from me too

[areyouthere]

 

 

I was at my daughters for a couple of days while I was feeling rough.  My littlest grandson sat on my lap and

said "I like you Grandma"  A real honour to get that from him, then today the older one said "I miss you when

you aren't here"     Little ones are amazing! 

 

I can just feel your heart swell!!!  I'm thinking of you, sending good thoughts ( especially to your Dr. so he can figure out what's going on with your hip))  and wishing you some more pain free days. RU

[Fireball2014]

Admire you MammaP! You really battle with that negative thinking and not let it get the best of you!

I like the idea of switching channels which is something I must learn to do.

 

I just get sooo stuck and hopefully "this too will pass".

 

Many positive hugs to you!

[mattinsmom]

Sorry to hear that you had a really crappy day. It isn't fair. You put so much thought and effort into your recovery that painful days are simply wrong. I do appreciate that you share them tho. We all have those moments and you do bounce back. It gives hope to me that when my crappy days visit.

 

And visits - yay for little ones who make us smile and remind us that we matter.

 

Just a thought about the thought of going back to medicinally induced floating thru life not caring...even when I was floating and "not caring" somewhere deep inside I did care. Somewhere inside I recognized that I was missing something, that something was wrong. Floating wasn't as much who cares experience as it was a defeated one.  

 

I am glad that you have a new doc, fresh eyes, and little ones that appreciate you.

[mammaP]

Sorry I am not about much. I am away looking after my grandson. Not that he

Needs looking after really, he is capable but under age to be left alone

while parents are away. Also my daughter is poorly and I am looking out

for her too. The good thing is that they live close to each other!

It is very strange being back in Scotland, but not having a home of my own

here. I feel very unsettled and not sure where I belong! I've been away for

6 months and it feels odd not going home to my old place. I'm a bit weepy

and emotional. Not depressed I don't think, just emotional. And very tired.

My joints are really bad and can't sleep. On the plus side its lovely to

see my family again and spend some time with them. :-)

 

I don't have my laptop so it isn't easy to get in and post here , not used

this contraption and miss my laptop, it takes forever to type and the thing

Wants to change everything!

[WinningThrough]

Hello mamma. Glad you're spending time with your family. I hope you feel better soon.

[btdt]

Hi Mamma just checking in I have been "away" sort of from the site for a bit.  Sorry to here things are emotional on your visit home family can do that to us... missing your old place a bit is normal.  Try to think of all the positive things about the new place is the only suggestion I have.  There is always visiting I read your last couple of posts and thought since your right there in your old town maybe getting some of your medical files may be a good idea... just a thought.  I have moved a few times in my life and keeping files or getting them after a move has been a huge issue for me.  

I wish you peace.

[mattinsmom]

Just stopping by. Felt like sharing a great big mm hug!

[mammaP]

Home from my visit to family. It was lovely but exhausting and a mix of emotions. I hadnt seen them

for 5 months and they had missed me as much as I missed them. I am their mum and grandma, and had

always been there.  We all got together before I left and had dinner, it was brilliant. When I got back I stayed

with my daughter here and then came home yesterday. The silence is deafening and I dont know what

to do with myself!

 

I've felt ill today an slept a lot of the time. Not sure what it is, I don't think it is withdrawal but not sure.

Everything has flared up and my joints are very painful. Sweating and feel very hot but temperature is low.

Very nauseous too.Hopefully it is just payback exhaustion as usual and will feel better after a couple of lazy days. 

 

Btdt... You can't get medical records so easily here, you have to make an appointment to view them and 

if you want copies have to pay for them, can't remember how much but it is per page and my files are big!

 

I received a copy of the letter from my new ortho consultant that was sent to my gp. I've never had this before,

it isnt done in Scotland so I was surprised but glad because now I can keep those in my own file.  I have the 

appointment for my scan next week then will see him again.  

 

Now I am going back to bed, hopefully I will sleep again.  Goodnight everyone, hope those who are going to bed

have a good night's sleep and those just starting their day have a good one. xx

[Fireball2014]

God love you, Mama!

[btdt]

Home from my visit to family. It was lovely but exhausting and a mix of emotions. I hadnt seen them

for 5 months and they had missed me as much as I missed them. I am their mum and grandma, and had

always been there.  We all got together before I left and had dinner, it was brilliant. When I got back I stayed

with my daughter here and then came home yesterday. The silence is deafening and I dont know what

to do with myself!

 

I've felt ill today an slept a lot of the time. Not sure what it is, I don't think it is withdrawal but not sure.

Everything has flared up and my joints are very painful. Sweating and feel very hot but temperature is low.

Very nauseous too.Hopefully it is just payback exhaustion as usual and will feel better after a couple of lazy days. 

 

Btdt... You can't get medical records so easily here, you have to make an appointment to view them and 

if you want copies have to pay for them, can't remember how much but it is per page and my files are big!

 

I received a copy of the letter from my new ortho consultant that was sent to my gp. I've never had this before,

it isnt done in Scotland so I was surprised but glad because now I can keep those in my own file.  I have the 

appointment for my scan next week then will see him again.  

 

Now I am going back to bed, hopefully I will sleep again.  Goodnight everyone, hope those who are going to bed

have a good night's sleep and those just starting their day have a good one. xx

Hi Mamma I always feel let down somewhat and tired after seeing my extended family.  Tired makes sense but mostly I think I miss them and miss not being well enough to keep up with many of them. I truly don't know how you do all you do.  I hope rest is all you need and these new wonderful memories will hold you till the next visit

Records can be had here in Canada even if you have to pull the legislative right of freedom to access they can be had...yes they are expensive sometimes large files add up that is for sure I have spent $$$$ on records most are mundane crap...some have been a gold mine for me personally. I like how things are done where you are now sounds like accountability to me. 

One thing that surprised me about my records were the mistakes that were made and I have watched this go down right in front of me ... with a doc who transcribed while I was still sitting there... as he was talking from his notes he made no less then 6 errors ... I corrected a couple and he did not like it so I just let him carry on with his work which seemingly had little to do with me.  

I think having any insurance pay our doctor bill is a mistake as long as we are not paying we are not the customer with any control the insurance companies are. Big mistake. 

 

I hope all goes well with the new doctor and they find some thing to help you pain.  Peace to you. 

[mammaP]

What a week this has been! Last weekend there was a family crisis and I was not well enough 

to go to Scotland, so I sent for my grandson to come here for a few days. I wont bore you with details

but it was quite traumatic for him and very worrying for me for a while. For the last few days we have

both been staying with my daughter so he could go to work with her hubby to give him something to

focus on.  I hate traumatic events, they leave me a wreck!  

 

I moved here to be closer to my daughter and moved into a house that was 30 minutes away because

she was going to be moving to the same area.  She never found the right place and has now been 

offered one that is 45 minutes away. I feel like I am losing them because it will be too far for them to

visit very often and I am really not up to driving for so long. By the time I have done 30 minutes my

concentration is starting to slip and I am exhausted.  They have said I can move in if I want to so

I don't have to be on my own. I'm thinking it over but don't know what to do. Decisions are never easy

for me, even deciding which jeans to put on leaves me in a tizz! 

 

I was at the hospital today for my bone scan. It was an all day event, first an injection then x rays. Then

return in 3 hours for scans that were to take 30 minutes. They ended up taking 1 1/2 hours because they

kept having to take even more.......then had to go to the loo because all the water they had me drink was

filling my bladder and it needed to be empty. Then back again for more. I feel sick now and hope I aren't

going to be ill tomorrow from the radioactive stuff they injected me with, my grandson is going home and

has to be taken to the airport. Thankfully I wont have to drive but will need to go with him 

 

It was strange having the scan, lying perfectly still for 30 minutes was hard.  I kept feeling that I HAD to

move and my legs kind of spasm and jump all by themselves! I meditated and concentrated on the moment.

In Scotland the machinery and building was much newer and had stuff I could concentrate on, like the clicks

and whirrs, and I counted the nuts and bolts, ceiling tiles and anything else that could be counted, but today in 

Oxford the machine was older, the building was old and nothing really to count but could look at the peeling

paint and listen to the noise. It reminded me of when I worked in a wool mill when I was 16, very briefly. The

sound of all those machines rumbling away....

 

  I have to wait now for an appointment to get the results. They have requested my images from Scotland for 

comparison so wont get to see the doctor until he has seen all the scans and x rays from the last 2 years.

I think it will be quite a while waiting for them to be sent, even if it is electronically because I have so many 

 

So that is me updated.  As for the taper, a few days ago I thought I was heading for a nasty wave and felt really

ill. I was scared, I'm always scared when a wave hits because I think this is the one that will last forever. 

Then I read the thread about caffeine and remembered that I had caffeine the day before, and lots of it! I never

drink it now and that day had some because I was out and couldn't get decaff. I should have stuck with water 

and will not make that mistake again!  So it isn't too bad, feeling flat and lifeless, tired all the time and not sleeping

well, insomnia is back but things are not as bad as they could be, or have been. I'm not sure if it is withdrawal or

physical, I lean towards physical because of the pain and think I would feel better if I got some decent sleep.

Right now I am going to attempt to get some of that elusive sleep.  Night night everyone 

[crazykatie]

Hey Mammap:)

I've just read your whole thread. You are so inspiring n give me hope that it will get better. I wish you luck with your bone density results. These psych drugs tend to inhibit our bone growth, increase fragility n cause osteoporosis. Trust me I know. I was dx with it at 36!! Drink a lot of milk n take a supplement with vitamin d n calcium now if you aren't.

I also completely know the feeling of having to sit still n the muscle tremors n like sudden itches n jolts you experience. I've had many mri scans this year. The last two of my head. They lock you in with a similar face mask like Hannibal Cannibal from Silence of the Lambs. They can take as long as 45 min. Like we need to be constrained. That makes my anxiety even worse. I have one more scheduled this month n then hopefully done.

Do you only experience tremors when you have to lay still? That's my usual time too. Any time I try to focus on relaxin my body, sitting still, going to bed and especially when I attemptt to meditate.

You have come far. You are a great inspiration for me. It's such a harrowing n prolonged withdrawal process n just when you think it's over then it starts over again. Ugh!!

Thank you so much for your updates throughout the whole process. It really provides insight!!

[mattinsmom]

Awww - no. Just no! You are so generous and I can't stand it when you hurt  I am stomping my feet and telling the pain to go away. Sending sleepy wishes your way (if it is still bedtime there). 

[Addax]

Caffein is a friend and foe for sure! As you know, I'm just now figuring out the foe part. I'm Glad you made the connection between feeling an impending wave and having had caffeine. As unpredictable as withdrawal and the road to recovery can be, I think it's comforting to be able to find a cause and effect relationship among so much ambiguity.

 

I hope sleep comes easier to you soon, mammaP.

[btdt]

I hope your in bed snoring zzzzzzzzzzzzzzzzzzzzzzzzzz

[mammaP]

Hey Mammap:)

 

Do you only experience tremors when you have to lay still? That's my usual time too. Any time I try to focus on relaxin my body, sitting still, going to bed and especially when I attemptt to meditate.

 

That's about it CK, when I'm laid down or sat quiet my leg might jump or my arm will suddenly jerk. When I am in bed

I can be totally relaxed and ready to doze off but have to turn over, no reason just have to and ignoring the urge doesn't work

as you will know!  .

My scan was a full bone scan of my whole body and was not the bone density scan. I don't have osteoporosis but have what

could be osteomyelitis. I have arthritis and ankylosing spondylitis which means my bones are fusing, the opposite of 

osteoporosis, the soft tissue around joints is calcifying  and turning to bone. The scan will give a picture of what stages 

everything is at and if there is infection that needs treating. 

 

I am now back home again after a few days at my daughter's. I felt ill yesterday and was expecting to be completely wiped

out today but I don't feel too bad!  . I was very depressed and kept telling myself it wasn't real. I had to get away from

people and yearned for the sea, I miss the sea so much I was crying because I wanted to sit by the beach .

 

I collapsed in front of the tv and did nothing for the rest of the day and actually slept for about 3 hours which is fantastic

for me and feel much better for it. Physically I feel weak and in pain but my head feels better so I am happy with that. I

actually feel like making something and being creative, it's a long time since I felt motivated to do anything and will look

through my stash and see what grabs me. 

 

I've just remembered I bought a bottle of pure cranberry juice yesterday and have been drinking that, maybe that has helped?

Think I will buy more but cant afford to drink it all the time! 

[crazykatie]

Hi Mammap,

I'm glad you're feeling better if only for one day. You gotta take what you can get right? Lol.

 

I am sorry about confusing the bone density scan n body scan. I just assumed they were the same n you know what they say about assuming. I do hope it comes back with some positive news. When are you supposed to get the results?

 

As you prolly have read I have osteoporosis n spondylothesis, however you spell it, I also have a mild case of spina bifida. I don't know what n where your pain is but I just want to suggest from my experience. If it is in your back, have you tried an epidural aka nerve block. I did trigger point shots for two years n wasted much money. I found a new pain doc n flat out told him I wanted off pain meds n wanted an epidural. I had a set of three in June of last year and I still don't have pain. They sometimes only last for three months for some but others can last 18 months. Just an idea, but you may have already tried this. I apologize if you have.

Do you experience pain constantly?

Thanks so much for your advice too. I really appreciate it. Hope your good mood continues into tomorrow.

[btdt]

I get that jerking too still all these years out and I get one arm and leg that tremor... when I am starting to do something... reaching extending my leg odd thing is they do this at the same time so reaching will start my leg going or stretching my leg will cause my arm to vibrate. 

 

Whatever it is that is making you feel better Mamma I am glad your feeling better.  I hope these doctors find something to help you feel more comfortable and mobile.  

 

I hope too that if it is the juice helping that you can find a way to keep an ongoing supply... and most of all I wish you peace inside your body mind and soul. B

[Wildflower0214]

What is with the twitching??! It happens to me too. Just started!! Does it eventually go away? I mean even if it waxes and wanes eventually, I would be happy. I can be completely relaxed in my mind, but my body is just not stopping. Magnesium helps me a bit. I find this most concerning when trying to sleep.