Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Nonightshades really hit home with this that he wrote. And it kind of plays in with my topic.
"First thing to start working on and controlling is the most important real estate in the world, the six inches between your ears. People that don't have RA will not and do not understand......quit expecting them to understand but at the same time don't close them out. You can get through this, you will get through this. You will do more than endure, you will live life. "
I think I was blessed with the diagnoses of ADHD right before the diagnoses of RA. Before that I was a basket case. I am on amphetamines (Vyvanse) for it. All that brain fog and fatigue I hear about I luckily don't experience it mid-morning to about 3:00 PM give or take. But come about 5 and after I become a zombie. I am self employed along with husband and I work in our home office all day. I have to be on the ball, alert, fast and handle a lot. I am bookkeeper, tax person, payroll person, bill payer, take calls all day from customers, do laundry, do the dishes, straighten up the house( I have a house cleaner on Fridays') and so much more. I'm in pain most of the time. The annoying background pain. I have a flare here and there. Had one for 2 days so far. Last Thursday and Friday we took off and went to the beach for 4 days of camping with horses. Lot's of stress for the RA person but worth it. My butt in the saddle makes up for everything wrong. Really.
Back on topic. So all this brain fog and fatigue I am really starting to take notice of. Sure, I would get the "after work tired thing" but that's all. RA Fatigue and normal Fatigue are 100% different., Try explaining that to someone who doesn't have it. Try explaining the RA brain and how fatigue affects it. Any critical, serious thinking is out the door, let alone trying to concentrate on a serious subject matter.
Right now my husband is ready to hire an employee. Not our first, but our first since 2008. During the housing crisis of 2008 we had to lay him off. I don't have a business degree, a management degree and just starting using Quick books for the first time ever. They actually have college courses on how to use the program. A lot I don't get. I am not the most business savvy. Yes, occasionally I still give that deer in headlights look when lost in my paperwork. I have put together numbers, figures etc for hiring some time ago.
Today he tells me over the phone he wants to maybe sit down after work on Friday and go over it. REALLY? I went into FULL OUT PANIC. Of course he doesn't know that. I've got to be straight with him but how do you be straight with someone who doesn't get it? Who doesn't get the fatigue and fog, especially suffering a flare during the week. And on a Friday when I am useless after work. We haven't done date night in a long time because I've been too tired to move on Friday nights and all I can do is look forward to sleeping in on the weekends if able. I wake up 4:45 AM Monday through Friday. So I suggest we do it on Sunday mid morning when I am at the top of my game. I thought that's when he wanted to do it. Saturday we have a ride....yes, up at 5 AM.
I could tell he was irritated. And when I get, as I call it, DUH. It only pisses him off.
I did not ask to be sick. I didn't wake up one morning and say, "Oh, I wish I had RA" In fact, I want ME back. But that ain't happening.
The worse part of them not understanding is the sadness that comes with it. Like I'm just a nuisance so just euthanize me and be done with it. Not caring means not loving. I don't want pity....I need compromise. Now I am starting to see why depression comes with it sometimes.
A little understanding goes a long way. It shows love. Flowers even would make me happy. The more they try to understand the more I get back to feeling like me. I try to educate family but no one wants to listen.
So...back to the brain.....do you all get the same thing? Does the fatigue hit you so hard it messes with your mental faculties? My memory is shot to heck! Literally. I could be told something and 5 minutes later don't remember it. Not all the time but on those off days. But during my work hours I am very serious about my job. I don't even take longer than 5 minutes for lunch or breaks....unless you count doing laundry as a break.
ADHD brain fog is not the same as RA brain fog. RA is much worse. The fatigue and cognitive issues are most of the time worse than the pain. Do you get it?
I just need support. I need to know I am not alone. There are days I wonder if it's all worth it? Then there are days I am walking on sunshine.
Am I wrong for wanting him to plan around me about this very important issue. Trying to talk to me on a Friday after work will be WW3 in our house all because I will have no clarity of thought.
Tell me others get it. Please.
Thanks
Melissa
"First thing to start working on and controlling is the most important real estate in the world, the six inches between your ears. People that don't have RA will not and do not understand......quit expecting them to understand but at the same time don't close them out. You can get through this, you will get through this. You will do more than endure, you will live life. "
I think I was blessed with the diagnoses of ADHD right before the diagnoses of RA. Before that I was a basket case. I am on amphetamines (Vyvanse) for it. All that brain fog and fatigue I hear about I luckily don't experience it mid-morning to about 3:00 PM give or take. But come about 5 and after I become a zombie. I am self employed along with husband and I work in our home office all day. I have to be on the ball, alert, fast and handle a lot. I am bookkeeper, tax person, payroll person, bill payer, take calls all day from customers, do laundry, do the dishes, straighten up the house( I have a house cleaner on Fridays') and so much more. I'm in pain most of the time. The annoying background pain. I have a flare here and there. Had one for 2 days so far. Last Thursday and Friday we took off and went to the beach for 4 days of camping with horses. Lot's of stress for the RA person but worth it. My butt in the saddle makes up for everything wrong. Really.
Back on topic. So all this brain fog and fatigue I am really starting to take notice of. Sure, I would get the "after work tired thing" but that's all. RA Fatigue and normal Fatigue are 100% different., Try explaining that to someone who doesn't have it. Try explaining the RA brain and how fatigue affects it. Any critical, serious thinking is out the door, let alone trying to concentrate on a serious subject matter.
Right now my husband is ready to hire an employee. Not our first, but our first since 2008. During the housing crisis of 2008 we had to lay him off. I don't have a business degree, a management degree and just starting using Quick books for the first time ever. They actually have college courses on how to use the program. A lot I don't get. I am not the most business savvy. Yes, occasionally I still give that deer in headlights look when lost in my paperwork. I have put together numbers, figures etc for hiring some time ago.
Today he tells me over the phone he wants to maybe sit down after work on Friday and go over it. REALLY? I went into FULL OUT PANIC. Of course he doesn't know that. I've got to be straight with him but how do you be straight with someone who doesn't get it? Who doesn't get the fatigue and fog, especially suffering a flare during the week. And on a Friday when I am useless after work. We haven't done date night in a long time because I've been too tired to move on Friday nights and all I can do is look forward to sleeping in on the weekends if able. I wake up 4:45 AM Monday through Friday. So I suggest we do it on Sunday mid morning when I am at the top of my game. I thought that's when he wanted to do it. Saturday we have a ride....yes, up at 5 AM.
I could tell he was irritated. And when I get, as I call it, DUH. It only pisses him off.
I did not ask to be sick. I didn't wake up one morning and say, "Oh, I wish I had RA" In fact, I want ME back. But that ain't happening.
The worse part of them not understanding is the sadness that comes with it. Like I'm just a nuisance so just euthanize me and be done with it. Not caring means not loving. I don't want pity....I need compromise. Now I am starting to see why depression comes with it sometimes.
A little understanding goes a long way. It shows love. Flowers even would make me happy. The more they try to understand the more I get back to feeling like me. I try to educate family but no one wants to listen.
So...back to the brain.....do you all get the same thing? Does the fatigue hit you so hard it messes with your mental faculties? My memory is shot to heck! Literally. I could be told something and 5 minutes later don't remember it. Not all the time but on those off days. But during my work hours I am very serious about my job. I don't even take longer than 5 minutes for lunch or breaks....unless you count doing laundry as a break.
ADHD brain fog is not the same as RA brain fog. RA is much worse. The fatigue and cognitive issues are most of the time worse than the pain. Do you get it?
I just need support. I need to know I am not alone. There are days I wonder if it's all worth it? Then there are days I am walking on sunshine.
Am I wrong for wanting him to plan around me about this very important issue. Trying to talk to me on a Friday after work will be WW3 in our house all because I will have no clarity of thought.
Tell me others get it. Please.
Thanks
Melissa
I once read an in depth description of Ra on a cellular level and what it really does to us. Maybe this will help hubby.
On a cellular level, Ra inflames the medial tissues of the inside of arteries. Our arteries have 3 levels of tissue...the inside, the outside and the medial. So if the inflammation of the arteries in your brain occurs, it constricts O2 flow to the brain tissues and so you get severe brain fog. If that restriction hits the area of the brain that affects need for sleep, then you get the horrendous fatigue that results from Ra(I think...not sure on this). I only found this out when it hit the arteries of my optic nerves and caused my vision to dim. When I started Orencia, my vision returned to normal so it confirmed what the docs told me and the explanation of Ra on a cellular level.
Synovial tissue inflammation is the hallmark of RA. It covers most of our joints so that is why we get so much joint pain. It also covers tendons and why we get tendinitis. Interesting enough, bursas are actually made of a piece of synovial tissue surrounded by a tough outer covering and why we get so much bursitis. It's actually synovitis. Doing some research, I found out that synovial tissue is one of the most highly vascular tissues in the body meaning it's full of tiny arteries so these tiny arteries get inflamed and the synovial membrane becomes inflamed as a result. Baseline definition if RA.
So when any of us develop that brain fog, in reality, it's Ra constricting the blood flow to our brains trough inflamed and constricted arteries. Yes, we have Ra brain. It is inflamed but without the swelling and redness and heat we feel in our joints. We just can't think or remember.
So give this explanation to hubby. You(and many of us here) have RA brain and it's not from fatigue but from inflammation of the tiny blood vessels in the brain...at least the medial tissue of the arteries
Interestingly enough, there is another disease process that is auto-immune called Bechet's Syndrome and it inflames the outer most layer of tissue layer of the arteries and it causes aneurysms along with symptoms similar to Ra. And we can get vasculitis that inflames all 3 layers of the arteries all at once...a truly life threatening complication! Another complication we can get is Temporal Arteritis that inflames the 3 layers of the large arteries of the brain at the temporal region. It's all about the arteries.
So now you can tell hubby you have an inflamed brain and that is why you become so out of it and there is nothing you can do about it. Steroids might help but it's really hard to get them to that mid-layer but high dose steroids are what is given for the other blood vessel layer conditions due to aneurysm possibilities.
I've been battling this for 39 years and at first, I'd flare for a few days about every 6 months. Slowly but surely, the length of time I flare has lengthened as the time in between shortened so that now, I am in flare for months and only about 3-4 weeks between flares...despite MTX and a biologic. The drugs make it the flares easier and less painful but I can feel it.
So it might be a wise idea for hubby to find himself a real bookkeeper who knows all the computer stuff that you struggle with. Costs money yes, but sooner or later you may make a mistake while flaring that costs him even more....let alone the stress it puts you under.
You didn't ask for RA...NONE OF US DID! But now you have it and you MUST deal with the realities of the disease.
I hope this helps you and my most gentle of hugs...............Jen
Right now, I am definitely suffering from RA brain fog. I can't remember the simpliest things. Like the names of flowers I have been growing for years. And Biblical Greek. I was doing well on higher doses of prednisone, but I am desperately trying to get off of it. I can't remember many of the words, despite the fact that I had them memorized several months ago.
And thanks 51% for the explanation. It really helps me understand what I knew was happening in my body (brain!).
Vasculitus......I can tell when a flare's going to start by the "swelling" of the veins/vessels in my upper arms and forearms. Mine have always been very pronounced anyway but they look like their going to burst sometimes.
hugs..........Jen
RA is overwhelming....wading through a fog trying to gather enough energy for thought process & if your capable of that then it's trying to find the proper order to communicate or execute that process. Hope that makes sense.
The mind is weighed down as is the body. Usually in pain. You could say it's double jeapordy. One does not make the other disappear. They co exist. Often think having both is a cruel joke.
No matter how exhausted I may get I often feel restless. Like a bundle of energy contained ready to explode.
Simply cannot think or recall the words needed to communicate.
Very frustrating & very hurtful when you just can't get the understanding. I'll admit it's hurt my feelings making me want to scream I damn well know what I want to say but I just can't get the words out or in the proper order. Pressure causes me to shut down.
Sounds like your extremely busy which can complicate things or enhance the exhaustion & fog. To many in your shoes you'd be Wonder Woman......your husband simply does not get that.
It's the "walk a mile in my shoes".
You cannot give what you don't have & forcing it would only magnify all the RA garbage & possibly the ADHD. ADHD may be in part the reason your able to do so much. Ironic....
No your not wrong on wanting accomadations to help you contribute.
After all if one had a broken arm we would not ask that person to help lift something requiring 2 arms would we?
It's not unreasonable to ask for better planning especially if the understanding is not there.
Sally made a good point. We can attempt to obtain understanding but there are those who will & those that won't. Education is the key to understanding.
I think we all hope love would be enough but that's not always the case.
Jen gave a great description. Perhaps sharing it.
People do not see our pain & struggles.
Makes it extremely tough when those closet to us do not comprehend.
We all have different dynamics with family, work, friends, life........
We can understand or empathize to a point. As we have a common bond. Yet we deal with different people, jobs, life styles.
I for one wish I could sit these spouses....families down & ask if they realize how blessed they are to have someone so willing to make sacrifices when they sacrifice by no choice of their own daily.
Just saying...
Really hope you gain some understsnding as it makes the world of difference.
Hugs
Sammy
I also have the brain fog and the fatigue. Sometimes my husband gets it and other times he get angry that I can't remember anything. Please show him what 51 said and hopefully it will help him understand a little better. I will show it to my husband too. Good luck in your business!
Wendy
I think the hardest is the change from 60 to 0 (going backwards) from what I was use to.
Thanks Jen....what a wonderful explanation. I'm like you in the research department. I love the scientific reasons behind it all. No fun to have RA but I was so blown away by what is NOT known about it.
Thanks Marlene....and I totally get the memory thing. It's like having a black out. It frustrates the heck out of my husband but I am not playing dumb. I really have memory loss and it's scary.
Thanks Jon for the reply! Yes, embarrassing it would be. At least you can sleep. I have never been a napper, even with my daughter when she napped as a baby/toddler. The exhaustion is there for me but not the "I need sleep" kind if you know what I mean?
Thanks Sammy! You nailed it.
Thanks Vett! You do walk in my shoes as far as husband's go. I guess we learn to struggle through it.
I think I have just too much going on. Stop the world and let me off.
MADE A BREAK THROUGH. The day after I posted this I broke down to my husband on the phone as he drove to work. I cried and told him how I felt. That night (of the post) I sat on the couch next to him and he grabbed his beloved Chihuahua and was kissing her all over her face. Call me crazy but that bothered me. I had felt such a disconnect from him for a while now...couple weeks or so and to see such a display of love for his dog while I got none hurt so bad and I told him the next day. AND....would you believe all that pain from a flare actually melted away after that call. So yes, our feelings and emotions and stress and I do mean STRESS really have a huge part in the flares we cause or bring on ourselves.
We did have that talk on Friday which was a lot easier than I thought. It was quick and at this point it was out of his hands.
Mother's Day his friend came over and we are hiring him it looks like. More work in the office for me= more stress so I asked about having my house cleaner helping a couple of days a week when I have doctor appointments etc. My husband hates me not to be in the office but I can't not go to my doctor appointments or he ain't gonna have a wife no more. Whoever said whatever don't kill you only makes you stronger didn't have RA!
I'm looking at my calendar right now and I have a wedding at 4 PM on Sunday. Who has a late wedding on Sundays? People work! But that whole wedding is whole other soap box!
Monday I have a doc appt with OBGYN due to the possibility I am now in true menopause and to make sure there is no other reason I have stopped.
Tues is my PCP regular follow up..... to what? I have no idea. lol
Thursday through Sunday we are camping with horses.
Monday...AND GET THIS ONE......I am prepping for a Colonoscopy on Tuesday.
^^^^^ a bit much you think?
The camping trip is booked and paid for. And I can't miss the colonoscopy. Luckily I found my old reports when I had one done when I was 44....they found and removed a polyp. Benign I believe,
And as dark and twisty as this sounds.....when I have been in my deepest dark places due to RA I have actually had it cross my mind if they found cancer it would be the cure all. My Mom attempted suicide when I was 10. I don't have the courage for that....no I would not try either so don't worry. I think all of us go to dark places once in a while.
Thanks for taking the time to read and lend me your ears. Everyone on this board is wonderful and supportive.
When I am really bad, hubby gets it. Lke yesterday my thumbs were 10/10 flares. He unloaded the dishwasher and washed the dishes, plus cleaned the kitchen. He's retired, so why not? And he is more "gifted" in that area than I am. LOL
As for feeling really down, and having "sneaky" suicidal thoughts, send me a pm any time. I am an ordained pastor and I do lots and lots of counseling. I do not have a church, because these days that would be impossible, although I do preach and teach in my church, and help out in various ways. So I am here for you!
As for me, if I don't keep a running list, something always drops out of my brain. :(
God bless you.
I'm sure through all the chaos & pain the ability to reach out in such a capacity must bring you a feeling of contentment. Helping others in any way, shape or form brings a sense of norm. There such a lack of compassion today & rush to judgement. It warms my heart to see the kindness.
Sammy
bcatz.....Oh, wow I know EXACTLY what you mean about the positioning yourself at night. I only had a week of it and because I was so new to RA I had no idea that was it. I would move in my sleep and wake myself up and every part of my body hurt...not ached but violently hurt. It was the worse week of sleep ever. Has not happened again.
I agree with Sammy...Thank you Marlene.
I find I cry a lot now too when I'm alone. I really think for me the fatigue and general feeling of feeling "unwell" is worse than the pain. I think I was in remission for a time then that April 7th...I did it myself.
I really miss ME.
My heart goes out to you I miss ME to every single day.
Acceptance is a daily process for me.
So is grieving with some days better then others.
I can say for me I'm 100% sure stress increases my pain & symptoms.
Of course other factors matter but with ups & downs of life I can now say I have no doubt.
I'm sure of another thing also. When we strive to keep up with life many times its expected. When we cannot keep up those around us wonder why. After all we've managed before. Pushing only resulted in stress & pain. Honest to goodness I had no clue just how much until part of that stress was lifted. Those around us see what they want to see. They can't fix us & I think they have a form of acceptance to work on. Only then it becomes real if or when acceptance occurs.
It amazes me how people who love us see what they want to see.
You do an amazing job. No one including you can ask for what you cannot give. It's not worth it. As much as our loved ones care no one will look out for you more then you.
So put you first.
Sammy