This has been a wild journey with FTD for the last 8 years, but I think I'm finally finding some peace. The last few weeks or month have been going really well. I've found less is more. I've accepted I need to do less and am functioning better for it. I used to think that I needed to somehow find a way to stay active and try to live a normal life with FTD, but that's not possible. What I found is FTD has a life of it's own and there needs to be a union of the two of us, instead of a constant battle over control. Over the last couple of years I've tried to get my FTD ass out into an overstimulated NYC world. I've desperately been seeking ways to fit in and each futile effort had me adjusting and readjusting to find a path to happiness.
A few weeks ago I turned around on the subway while heading to a store. I realized I kept going to the same store for over a year and was overstimulated by the time I would get there. I would always come home from the two hour trip anxious, tired and empty handed. I would give myself about 10-25 minutes before I would abandon ship. Crowds, lighting, noise etc. would prove to much for me. Everything was amplified and I was aware of everything happening at once and overloaded. (Right now I'm at Cafe Bunni and there's this plump woman standing 2 inches from me laughing and giggling about some nonsense. She's been at this for about 10 minutes and I'm using my Mantra, (NAFW) Not a Fu__ing Word). On the verge of me leaving, she sat down to eat her giant croissant and coffee her husband brought her). Thank f God. Someone bumping into me would result in a cocky, if not inappropriate response. Someone trying to hand me a flyer would get interrogated to why they were destroying the planets trees, smoke in my face would have me tell the person if they wanted to die they should just commit suicide and not take others with them.
I got home and realized that I'm at the point my routine needs to stay in tact in the morning with nothing planned in advance. If something needed to be done, it was first thing in the morning when I was more in tact. Of course I need and want to go out with friends, but if I plan these things well in advance and have an escape route everything usually turns out okay.
I also realized that I wasn't happy at Starbucks anymore. To noisy and not comfortable. Many of the regulars never returned since the renovation. It just wasn't the same. For a long time I tried to put a square plug into a round hole, but it wasn't working. I slowly transitioned to Cafe Bunni having my $1.50 cup of tea each day. I've noise reduction headphones so when it gets noisy I stay in my own world with my music. They don't blast the music like McBucks does. At McBucks, they were manic with the volume of the music and asking them to lower it a bit, became a crime against humanity. At cafe Buunni it's at least background music. Noise suppression is extremely important to someone with FTD. Every morning my Routine takes me out of the apartment for a few hours to have my $1.50 cup of tea and hang out in the outside world. Then it's back home till the next day, unless I have a specific plans or I feel like going out. Everything is finding a balance to live in this world with FTD. You need to work hard to find that balance. It just doesn't magically happen. It's amazing how a good few hours set up the rest of the day.
The following quote is from a fellow FTD patient:
"As out brains develop we learn to filter out sounds. Our home has a wall clock that chimes on the quarter, half and hours, but most of the time we never "hear" it. Same for people who live next to railroad tracks or emergency rooms. Those filters are degenerating with the disease. If my wife drops something that generates a loud crashing sound, I involuntarily jump out of my skin even if I am seeing the objects fall. Learned behaviors like inhibitions rely on filters as well. When disease destroys those particular cells, we act "uncivilized" with bad manners, cutting remarks, or just say the obvious (you must have had a miserable childhood to become such an a**hole), no matter how uncomfortable to others. Sometimes that can be so refreshing."
Things are always more comfortable at home and we get to stay away from the overstimulation of the outside world. It's hard being around people and keeping up with the world, especially since we're in a different place. I have behavioral issues which affect me and others so there's a need to be home in a serene, safe environment where I stay out of trouble. Even though it doesn't bother me and I'm unaware when I affect others and couldn't care less when I say things, later on I realize how much I'm a pariah.
I used to force myself to go out and socialize. This caused a lot of confusion and anxiety. Now I'm finding a balance being perfectly happy hanging at home, as long as I'm productive in the mornings. I need to be productive with purpose. Otherwise for me, there's no reason to be........
It's getting close to 9:30am and I'm ready to publish and head home. I'm still being productive and living life with purpose.
Howard
Howard,
ReplyDeleteGREAT information how your brain processes and how you deal with distractions. I think now you should update your About Me picture and not give StarBucks free advertisement. I love your detail of people, but would you have wrote it like that before the disease? Stay strong - your amazing!
Hi A,
DeleteYour right, I need to dump my Starbucks pic.
Before FTD, I never wrote, except reports and standard stuff for business. My friends are pretty amazed how I all of a sudden became a talented writer. I don't think about it.
Howard
This comment has been removed by the author.
ReplyDeleteHoward,
ReplyDeleteFor me, Over-stimulization, is the thing that has changed my life most of all. I used to be a very social person with loads of friends going out almost every night after work and now I have taken to staying home, in my controlled environment, so that I don't send myself into an panic attack over the very same things you've described.
I can get triggered by someone working at a fast food place, yelling out someone's order in my ear at a crowded restaurant, if the music is too loud in a restaurant while i'm trying to talk with someone, a sudden loud noise out of the blue, or little kids squealing in delight...the list goes on and on. Being home is how I've managed this for a year and a half.
Telling this to a doctor just leads them to brand me as anxious and one Psychiatrist diagnosed me with Agoraphobia - because I can control my home environment. Even though it feels like a panic attack taking Xanex or Attivan doesn't help.
Thank you so much for writing about this because for the past year and a half, I didn't know anyone else felt like this nor have I read it in the multitude of articles and books I've read or even tried to find on the internet. As bad as it is, it does bring me comfort to know that I'm not alone.
Stay strong Howard, you are such an inspiration to me!
Kathie
Howard,
ReplyDeleteI couldn't have arrived home from the hospital to a better blog. I was inpatient with 25 other individuals with eating disorders for almost eight weeks. The worse part was the noise and chaos of being around so many people. They had to make a special exception for me to lay down for two hours in the afternoons or I would have gone insane.
I knew this was a problem before I left as I am usually very withdrawn and isolate myself from others. My normal routine was to go to the gym and workout fours hours each morning. Now they say I am a compulsive over-exerciser and need to change this behavior. That leaves me home alone with no social outlets.
I got out of the hospital prior to finishing treatment as I fractured my foot (13 previous surgeries) and broke two screws. This will mean another foot surgery and being layed up for 6-8 weeks. I also have a degenerative mediscus in my knee (same leg) which will most likely result in knee replacement surgery (already had three knee surgeries). That means that after the surgeries I will need to go back into the hospital as the eating disorder is still alive and well. The up side is at least I am home. I have missed everyone on facebook and am glad to be back and caught up on e-mails. Talk to you again soon. Janet
Janet,
DeleteYou poor thing. You've been through hell. I'm glad your home and will see you on FB.
Keep up the good attitude.
Howard
Howard-
ReplyDeleteyou are the welcomed drink in the dry desert for so many people.You offer confirmation that their peculiar behavior is experienced by others.Please keep at it or people will be at a lost for confirmation that they haven't totally lost their way yet!
One of your true supporters and believers!
Thank you so much for the kind comment Diana.
ReplyDeleteHoward
Howard, just a quick word to thank you for your blog. My sister in law was diagnosed with FTD last winter. Since then her life has completely changed as well as the lives of those close to her. Her FTD manifests itself differently from the way yours appears to -- she seems to utterly lack self awareness of the effects of the disease, such as the lack of inhibitions. Your writing is so helpful to me for many reasons, but one of the main reasons is, I see it as a window into what's going on with my sister in law; you say things that she is incapable of saying but would if she could. Again, thank you, and best of luck on your journey.
ReplyDeleteThank you very much Rob, Best of luck with your sister in law. There's no rhyme or reason to why and how FTD effects different people in different. It's the lucky or unlucky draw of where it progresses in the brain.
DeleteAll the best,
Howard
Howard thank you. This has been a major issue in my life as well.
ReplyDelete