Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Not even a mediocre day πŸ˜”

Jul 07, 2016 10:16 PM

Today was one of those days that I don't like to think about. I've felt tired, like a flare was coming for over a week. Even when the granddaughters came overnight I was dragging.

I called my pharmacy for auto refill last week but never heard back. So I called yesterday and the automation said it would be ready for pickup today. I show up to get it and the cashier said it was picked up Sunday. I disagreed saying I didn't have it. The girl has known me for a long time and knows about my dx dementia & memory loss. She came close to me and quietly said she personally checked me out Sunday, and suggested I go home and search for it. Omg, no way! I'd remember Sundays activities, right? Shouldn't I remember? I knew she knew I was struggling because i could see it in here face. I called my hubby and he said he didn't remember what day we went but we had gone to the pharmacy over the weekend. So I drive home, check the car, check my drawer of meds. All the while I'm thinking I'm really losing it and apparently misplaced it. Then I look at the bottles "date filled" that I'm holding in my hand, and it's the med I did not remember picking up! I called the pharmacy and apologized, telling her i found it. I apologized that this was my 4th time I've either paid for & walked out leaving the med, or I picked it up but forgot. I hung up the phone and just cried. 😭

For several days I've really struggled to recall names, or say the right word. It's been so frustrating to say the least. I was so bad today, even at the doctor appt, that I forgot what I was suppose to ask, and struggled to tell him things. He asked where my hubby was, and I told him working. I could see this different look on his face, and I knew he was thinking about my inability to communicate with him. It was the same way yesterday at a different doc appt. But she's seen me several times and knows me better. She always nods here head and waits for me to get the word I'm struggling to find. She was very patient but I could still see this look on her face that said she knew I was "off."

Sure, yes, I have Fibro fog. And yes, they've diagnosed me with dementia & memory loss issues. It seems to be recent, short term things I struggle with most. And it's slowly worsening over the past year, but this past 7-14 days have been horrible. Instead of just struggling to find the right word, I have stupid sounding, wrong words coming out of my mouth. And in my mind I know they are wrong, but my tongue won't cooperate & neither will my brain. So it has to be something more!

All I could think of while crying was my father and his mom having Alzheimer's. I'm already displaying some of the same exact actions he has been having for 5-6 years; I'm 54 & he's 86. I want to curse right now because it's a really bitter pill to swallow, thinking I may actually have more than just dementia & memory loss going on. But cursing would do me no good, not to mention I'd feel awful inside using bad words. That comes from my grandmother washing my mouth out with soap πŸ™Š, & being a Christian. But I am angry & scared & hurt.

My sister happened to call me while i was upset and I was sort of snappy. When she asked what was wrong I told her. She replied that maybe when I have this neck surgery it will clear up my confused memory. Really? Omg!! What do cervical discs have to do with how the brain & tongue forms words? Beats the heck out of me!

Then my daughter called to ask just what this surgery is going to be, and why was it so risky. I tried to explain what the doc said as best as I could, given the issues I'm having. She said, "well mom it sounds like you have no choice but to have the surgery. You're screwed if you do or don't." Yep I already know that. It has taken me one hour to type this, to express myself, checking and proof reading to make sure I didn't say a stupid word or sentence.

Maybe tomorrow will be a better day. Even if it isn't though, I won't have to go anywhere or talk to anyone, so if i day the wrong word only me and my dog will know. Now I think I'll lay down and cry some more.

Hugs & prayers everyone else has a better day & night! And thanks for listening!! πŸ˜”πŸ’•πŸ™πŸŒΌ

Jul 08, 2016 2:04 AM

Flappsy, my heart aches for your situation. I have to ask, have you been put on any new medications lately? It sounds like since this has happened suddenly and quickly, you may be having some sort of drug interactions. I'm just wondering and perhaps grasping at straws.
Sometimes stress will also cause confusion and have you become confused in your thinking and you did say that you've been extremely tired. There have been studied to show that if you lose sleep, your brain shoes deficits as if you're impaired. (Some tests were done in a secure setting with people being deprived of certain amounts of sleep and some actually had what they called "micro sleeps" which are not noticed by the participant and also were impaired as if they were considered to be legally intoxicated.) Pretty scary, isn't it?? I pray for you that you get the answers you so desperately need and also let you know that you have my hand hold and my shoulders to lean on; I am sending you positive vibes and reassuring {{{hugs}}} your way.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jul 08, 2016 6:45 AM

Oh sweet Flappy, my heart broke for you reading this. I had a very similar thought process as Alwayz in regards to how quickly it sounds like it all escalated. There may be some genetic parts that are being pushed along by meds or other things going on right now. It may be something to look into or ask about. Add in having memory issues is one thing but then communication difficulty on top of that? It all kind of skyrockets and sends stress into the stratosphere. It does sound like you have ALL sorts of supportive people in your life though which is awesome, even the tiniest bit helps. You've got another shoulder to lean on here too.

Jul 08, 2016 10:21 AM

I've not started any new meds, and actually was taken off the gabapentin before my stomach surgery in May. I haven't restarted it because I really can't tell it helps. At first there was some lessening of the neuropathies in my hands and feet. But being off it there's been no change in symptoms, no better or worse, so why take it? And even though I've been under a lot of stress it hasn't affected my sleep except for 2 nights in the two week period. I try to get 8-9 hours a night, albeit broken sleep from frequent waking.

The other symptom I'm having that I didn't think about when I posted last night, is I'm off balance bad. I can't even count the # of times I've suddenly veered sideways and had to throw out my hands to keep from falling. When it happened again this morning it dawned on me that this too has been going on for nearly a week or more. I don't have sinus congestion or drainage going into my ears, which is unusual given the seasonal allergies I usually have. So I know the off balance isn't coming from any sinus issues.

It reminds me of what was going on nearly 2 years ago, when several docs suspected MS. It took months of being doc-hopped, with each one's tests before they did a spinal tap then sent me to Mayo. The spinal test was ok, but the neurologist warned me & my hubby that it can take years for MS to manifest signs in the spinal fluid & brain. The brain scan showed damage in my right frontal lobe, and never having been injured there they did other tests. That's how they concluded that I have dementia with memory loss, and the issue with the 8th cranial nerve they say is affecting my dizziness. But I'm not dizzy at all, just having balance issues. It's frustrating, but I'll pull through, especially with t the community support pushing & pulling me through! πŸ˜‰ Than you for all your support! Hugs & prayers for little pain and a good weekend! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 08, 2016 12:29 PM

I know you are scared to death. I know I can not change any of these issues for you. I can encourage you as a child of God, to remain steadfast with your communication with Jesus. I am not there so I can not accurately assess your signs and symptoms. But, what I do know about you my friend is your faith. You have a great faith. Bring all this and all your thought to him. Surrender. I don't think it is as you see it. I know you have balance issues, I do too, not affected by dementia, my cervical spine! The memory stuff, I don't know but something is exacerbating your symptoms. Don't give up ..God is in the middle of this...and when you get overwhelmed, pray, cry out to him. This post was for Flappylady, a Christian. If this post has offended someone of another faith. It was intended for Flappylady
Hang tough Flappy! I am praying for you and will let others in my circle know to pray too. You are not alone, and you are loved. Love,Terri

Jul 08, 2016 12:57 PM

Omg u poor thing. I thought i was having a shit day. My hand is so swollen its hurting so much i cant see straight. Typing on a smartphone with my left hand. Im right handed and have quite big fingers. So keep having to go back. Its bloody exhausting. Have you tried post it notes? Just a thought. I have them all over my diary with my daily tasks. I tend to cross off when done. Hugs. Xx

Jul 08, 2016 1:03 PM

Omg that is s great idea! I use those all the time... excellent idea. Sorry you are hurting and hope you have some relief.love, Terri

Jul 08, 2016 1:10 PM

I forget everything otherwise. X

Jul 08, 2016 1:37 PM

I know u r really frightened angel πŸ˜‡
It will be ok in the end... i promise ❀
I was so moved reading ur post. I dont say much about this cause... well...no one has ever understood before...

I was dx with MS 13yrs ago... i had one event (of many) that stole my longterm memory... its frightenning flappers... i am in tears. I am 44... adopted so no family history... ive lost my childhood, my youth, my wedding, my 4 children being born, aand its horrible... no memories of my kids growing up... or my job! Its crazy 😒😒😒 i was in an 8yr abusive relationship and i cant remember any of it! I have so much cervical spinal stuff... and discs blowing in lumbar and sscro areas now... my meds are high... they rob my short term memories too... i have to write everything down in a book i take everywhere... i have forgotten to pick up my kids from school when they were young'uns... bbut i am loosing facial recognition now... it scares me to bits! Oh flappers i have done exactly what u described... several times now... but they all know me by name so i have learned to trust certain people... but i cant open my own front door... cos i dont recognise people i have known for years!

Now... i know all that seems quite terrible to have to deal with... i am forced to live in the moment! I cant make memories... but i choose to be happy... for as much as i can muster! Live with passion ...accept and adapt and to just show love and compassion to each soul that i meet! I dont say this with a heavy heart... i just want u to know that i have walked in ur shoes Flappers... and i stole ur shoes and ran off with them... several times over πŸ€—πŸ€—πŸ€—

Jul 08, 2016 1:38 PM

Sorry i posted prematurely then

Jul 08, 2016 1:39 PM

Just know u can get thru this... its not the same but the fear and desperation are the same... u will be ok hunni... u will always have ur family here too xxx πŸ˜‡πŸ˜‡πŸ˜‡

Jul 08, 2016 1:45 PM

Terri, thank you! I think God's holding me up & keeping me from coming unglued. I thought my nervous breakdown was bad on me. Not anymore. The devil is really trying to shake me up...ain't gonna win! Curiously I was just reading info on Emory University Spine Hospital website, about cervical issues. I was very shocked to see imbalance issues mentioned! Wouldn't it be awesome if this surgery fixed my neck pain, bladder, bowel, & balance issues? Oh please yes Lord!

Jul 08, 2016 1:52 PM

Fibrofitty, I'm sorry about your hand. I'm right handed and I had to do everything with my left after CTS surgery. It was a task for me & laughs for my family, especially watching me eat! I'll have to try and remember the post it notes & give it a try. I hope your hand gets better soon!

Jul 08, 2016 2:01 PM

Thanks. I know its easier said then done but try to stay positive. We only have one life. I do feel at my worst sometimes because the pain can be unbearable but I look at my kids and grit my teeth. Much like im doing now, one of my twins is eating her tea. And keeps saying are you sure your ok mum? Im in a little pain but I'll be fine darling. So dozing on the couch it is. Hugs all and stay safe 😘 xx

Jul 08, 2016 2:07 PM

Lulabel, wow! I'm so sorry to hear of all the memories you've lost. I'm sure it's been a big struggle for you & your family. My memory losses seem to be recent things, not historical. I've always been terrible remembering names and faces, but dates and phone numbers I was awesome at. I started forgetting birthdays and anniversaries about 4-5 years ago. Then it was doctors office locations to their names, even driving to the wrong doctor. Now I'm using wrong names and words, or I'm saying a word that's not really a word but some stupid thing that comes out my mouth. I do try to stay positive even when faced with sudden issues, like the neck surgery. For some reason this surgery on top of these symptoms just feels overwhelming. I really wish the surgeon has kept it simple instead of telling us all the risks of having/not having surgery. Ignorance sometimes really can be bliss! Lol

Just an FYI request to all ... If I say something stupid sounding on here, please forgive me and help me laugh! Love you all, with hugs & prayers!! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 08, 2016 2:09 PM

Dozing sounds like a good idea right now😴

Jul 08, 2016 2:21 PM

Go enjoy a nap , Flappylady. You would be very very surprised about the issues caused by cervical spine problems. Much love and blessings,Terri

Jul 08, 2016 3:32 PM

Just blessed to know u all... and to be accepted with such truely positive thoughts and ideas... and above all we are all together ❀
Night all πŸ€—πŸ€—πŸ€—

Jul 08, 2016 4:12 PM

Sweet dreams Lulabel! Terri, I wasn't able to nap. Typical! Lol

Jul 08, 2016 4:39 PM

Yep ,I completely understand!!!!!!πŸ˜˜πŸ’œπŸ’•πŸ˜΄

Jul 08, 2016 8:17 PM

Oh Flappy!!!!! Honey I am so sorry. I feel your pain. I do not have dementia, but I definitely do have what I call "brain fog" that I believe is due to all the medication I'm on (11 or 12 of them). I am always forgetting words, or leaving things behind, or doing things that I don't remember doing. Thing is, I've always had tendency to be this way, but it's a lot worse now than it's ever been. It's very frustrating and I'm sure you feel the same way. I wish I could hug you in real life and reassure you that you are not alone!!!! πŸ’” 😘

Jul 08, 2016 9:03 PM

Thank you Bluegypsea. I caught the virtual hug! Sending one back for you...(hugs)))! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 11, 2016 12:12 AM

πŸ’— hope you feel better soon! Btw, no to retrial of Gabapentin. It made me have side effects of cognitive blunting. It sounds like it wasn't clearly helpful for you anyways! Hang in there! πŸ’™πŸ’•

Jul 11, 2016 2:24 AM

FlappysLady81...for you.

I don't know when I started
But I know you were right here for me.
I'm not sure of my complaint
But you so gracefully helped me to see.

So today if things get fuzzy
And your not sure the road your been down...
Come right her to us, my friend
Where love and hugs can be found.

I know I talk for many
And some may have said it or not...
But we're not the same without you
And we sure do love you a lot!

You mean so much. Hang in there.


Jul 11, 2016 3:36 AM

Hang in there. Sending you prayers and hoping things will improve for you soon. πŸ€

Jul 11, 2016 10:51 PM

@ Invisblepain, thank you. I actually haven't taken my gabapentin since just before my stomach surgery in May, and I haven't missed it.

@ Luvmylabmolly, Just thank you so much for that! It brought treats years to my eyes. I actually took a photo of it to put in my notes.

@ Lostmymarbles, thank you for the prayers. I'm not sure what's going on but it's not fun. Your user name is how I felt today.

I woke this morning and felt really off again. I went to the kitchen and for about five minutes I walke to one cabinet and start to do something then freeze, wondering what I was doing. Then I moved to the coffee pot area and took my cup down, then froze again. Then back to the first cabinet, and then the coffee again, never doing or accomplishing anything. My hubby was sitting at the table watching me and said, "What are you trying to do?" I looked at him and sort of shrugged and said, "I have no idea." Then he said for me to get my coffee and get my yogurt to eat, and I did. Later after he'd gone to work I got my shower and drive to my dental appt. The lady said, "Well sweetheart, you've got a long wait." I asked her why and she said, "Your appt isn't for another hour." Omg! Really? I drove home then went back after setting a timer. At 9:20 pm I realized I had forgotten all my supper & bedtime meds, so I took them late. While brushing my teeth I straightened up twice from leaning over the sink and my head felt like I was spinning while my feet & legs felt like jello about to collapse under me. But the sensations went as quickly as they came. This really sucks and scares me to no end! I'm hoping it's just address from my stomach surgery, followed by my dad's worsening Alzheimer's, my sisters TIA, and other stuff going on, along with the upcoming neck surgery.

On Wednesday I have to meet my brother to take him into the city, because he got lost last time & freaked out going the wrong way down a one way street. He lives with our other two siblings, but one has to work, and the other one (had the TIA) was with him when they got lost. Anyway, I'm meeting him at 8 to go to a 9 am test, then taking him to my house where we'll stay and eat lunch. Then I have to take him back to the doctor at 3:30 for the test results, then back to his vehicle, and then drive home. It's going to be a very long & tiring day for me; total of 3 hours just driving time. He wants me to go to help him understand the doctor; he will need neck fusion at some time. I hope & pray I'm not discombobulated on Wednesday!!! Hugs love & prayers to all for a restful night! My meds are kicking in so I hope to sleep some. Good night! πŸ˜˜πŸ’•πŸ™πŸŒΈπŸ˜΄

Jul 13, 2016 10:38 AM

My brother's appt was cancelled. Good thing probably because I'm still off balance & discombobulated feeling. I walked outside with my hubby last evening to show him where to plant some butterfly & burning bushes we bought. By the time I walked across the yard I was tired. I was bent slightly to twist the post in to mark the spot for the last bush. When I straightened up and turned around towards the house I became very dizzy & lightheaded. I had to get my hubby to help me back in the house. I've got to get some iron supplements today. Hugs & prayers everyone's day goes smooth as possible! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jul 13, 2016 4:18 PM

Oh flappies and lulabel, you're in my head. I have MS (dx 2001) and fibro++. I have not been dx with dementia.
I have memory issues like yours and your kitchen scenario is a multi-times daily occurrence for me.
I get off balance without being dizzy, fatigue that hits suddenly and hard, short and long term memory loss and facial recognition problems.
I forget people I've met and who are important. Plus I forget anyone who is not in my immediate view.

I've lost most all of my friends because not only do I not remember to call, that we made plans, etc. but I don't remember them unless they call me or are right in front of me. I even forget my children.

I'm struggling with appts. Missed one today, after missing 2 in that office, so they may not see me any more. I feel as if that punishes me for having the very illness/ symptoms that they're treating.

My legs sometimes just don't want to support me, or its as if floor is moving out from under me, or strangely, not that I'm heavier but that the floor is pushing up.
I forget what I'm talking about, can't find words, say the wrong word or say something that's not a word, and occasionally say or do things not appropriate to the situation.

I get lost easily and use GPS to get to and from the docs, store, etc. Forget birthdays even of 5 people close to me who share my same birthday! Grrr.

@lulabelle I have been in abusive relationships too... people have done really harmful things to me but I'm in lala land. Don't remember. Had a traumatic head injury from one (or 2?) which may account for some Sx but... I don't like to think about it or tell anyone. And I forget. So I'm not wary of people I've got reason not to trust. I too, must live in the moment most of the time.

@flappyslady81 The good news maybe, if you do have MS, there is treatment that (Copaxone, isn't advertised as such) everyone who knows me says helps my Sx) and does slow the progression. Also, very hopeful research on treatment that could eradicate the disease and even repair damage. Hope and pray.

Plus, if you go to the NMSS.org site, you'll find support and useful info, even if you're not sure you have it, it's worth a look. It may support or negate the idea of an MS Dx.

I use post its plus the alarms in my phone on the calendar app and use a docs app to write lists & notes because my phone is always with me. Now, if only I could remember what the notes and lists are for... that I ever made a note... yikes! It's not a life, it's an adventure.


Jul 13, 2016 6:39 PM

Autoimmunes, gosh, what you describe is very similar to these spells of symptoms I'm currently having, and that started well over a year ago; especially the forgetting things, dates, locations, beats, etc. Sometimes my off balance is not accompanied by dizziness; they're 2 separate symptoms. And I've been forgetting to call family & friends for several years too. As for facial recognition, or names for that matter, I've always been bad at that.

How long did it take you to get diagnosed? I'm still hoping and praying it's all from the other issues I already have. But it doesn't explain the episodes that come & go. Thank you for sharing the website. I'll check it out if I can remember to do so. Lol. I'm glad to know the med you take is helping some. Like you I use a lot of different apps to help me. But I forget what my notes are about a lot of times.

Hugs love & prayers everyone has a good night! πŸ™‚πŸ’•πŸ™πŸŒΈ

Ready to start relieving your pain?

Join Community