It was weird today. Today I worked as usual and had small things like usual. But the odd thing ive done to do to help get me through was try something new. I have speech problems, walking, dystonia, etc. Today I tried to get around the speech problem.
I SANG a Song! Thats right when I couldn't speak right I tried to sing and I sang the happy birthday song and it was clear! ODD. Also with that I picked up the phone and turned my back away from my wife and I spoke through the phone like she was on the phone (mobile for the aussies). The odd thing was that my speach cleared but when I spoke directly to her it went back stuttering.
So my battle I have with myself is, when I have problems and want to get around the symptoms, I try to use techniques. But the techniques I fear will tell myself that this is the way I need to be. Leaving that to be my norm. My walking clears when I walk backwards, so walking backwards is my norm now? How will I see myself now? I dont have time or resource for physio or speech therapy, money is a factor and I cant afford it. My family is 2300 miles and more in kilometers away. Im not saying I am screwed, but I am saying it is very odd to see how my brain could do things differently after my symptoms start.
So I again look towards my wife, what I do, how I feel is the best thing the Lord has given me.
Let me know how anyone has dealt with their symptoms and seen an outcome.
I have noticed that when I have to go out to work for my 2 to 3 hours, my walking usually gets a bit better than it is at home. Walking my dog distracts me so my walking lasts longer. I think it is because she is off lead and I am concentrating on her being safe in the park.
I have also just remembered that I have experienced slight and occasional stuttering. I put it down to psychological as it was before fnd diagnosis. That IS interesting. It hardly happens at all, and not for ages.
Also, if my legs shudder in bed, they stop if I bend them.
We have many things in common even across the biosphere. Yesterday my walking was close to getting normal but still no big improvement hopefully today will be different. Good thoughts. Today the temp is supposed to be fair if not a bit chilly so I definitely need to layer up. I figure for my symptoms walking will get better.
When you have leg shudders in bed, mine do too, do you have a hard time bending them? I try but its real hard to.
And I do know how it works with your attention on something else and walking.
The leg sudders depend on the strength of the shudder. If it is mild I can move my body so I can bend my legs. If it is stronger I have to wait for a gap in the shudder and quickly bend my knee. I have had some that last 20 minutes or longer. I don't know how long, I just wait them out. Sometimes it has involved my torso too.
I also noticed that if it is very, very severe, my legs will kick out anyway and other parts will shudder instead, like the shoulders.
I can go on for ages, it's weird. So I will stop there, lol
Yes my legs havent lasted more than 20 minutes but last night my legs kicked out real hard. It freaking hurts after and last night my left leg felt like it was different than the other limbs so I couldnt use it.
Yes my things are weird and it sucks. EVERYDAY!
But hey I started a new job today as a diesel tech in a real nice gig. I signed up for short term disability and long term disability just encase lol.
Last night I went a got CBD oil which is supposedly helpful. It worked out great for 10 hours very minimal tics like tourettes. hopefully that's something that'll last cross my fingures. Does your son check on you and try and help?
My wife does but from my perspective I feel so much that I can't be the husband she wants and needs. Some days I can't walk and others not able to speak. Very tough. I may have a disability but im not disabled and I am glad that she loves me still.
That came around quick. I read you were starting a new job. I am really happy for you! It makes a massive difference.
My shudders are not so bad they hurt, but they make my muscles really tired and ache. We can't get anything like cbd derivatives here. But it will be interesting to know how much it helps you.
No, my kids are pretty poor at being supportive. My daughter came over to help when I got out of hospital and she washed the dog! The last thing that needed doing, but something she enjoyed. My son now lives a couple of km's away. But even when he lived here he would say he was going to do all sorts of things, but he never did.
So it is easier to live alone and not want things from people who won't follow through. I can leave things a mess if I need to (though there is less mess on my own).
I have recently become concerned about my concentration while driving. This is a big deal because driving is my job. I am a support worker. But I have had several near misses and yesterday I scraped another car that was parked. I have to talk to my psych about it.
But seriously, have a wonderful time with your trucks!!!! I am really, very happy for you because I have been following your posts and replies. 🙂
yes thank you it helps to have someone on my side even across the globe. If you wanted to know Im not sure about focus but Ive had staring spells and I had a fender bender last october after my therapist encouraged me to drive shame on her. what happened was that i went to a quick nod off in slow traffic. no big damage just paint and plastic brake, but it doesnt matter the severity it happened and I made sure to throw it in her face of me not wanting to. On trucks theres no long driving for me its just mainly straight work.
Its been only 2 days but ive had a different time way less on my tics and attacks.
im sorry that you dont have that cbd in australia but if theres anything to lower the moods like tea on a physical and chemical scale then i think its worth trying. im trying anything but also out of options. Talk therapy doesnt work or any meds. but hey ive got my family and work and you have your job and your projects.
I think your kids are probably just living their lives but still it'd be nice to have them show more love. I wonder if you did a prank on them if theyd react in the way you want them to, lol even if it was out of malice.
A couple km's isnt much over here km's is less than a mile and I can walk a mile in 20 minutes shame on him.
Isn't there a program or specialist you could go to that you could get answers? The USA totally suck on the healthcare. If its not money making its not enough for people to want to invest time, money or themselves in. Ive gone to websites and support groups and they show the UK and Australia. Over here theres only 2 places and theyre too far away. Is that the same for you?
Yep pretty much. There is a place in Brisbane that treats fnd, but I live in Adelaide. They also stopped taking new patients when their waiting list reached 2 years. That is it in Australia.
I agree with you about the kids, they are 19 and 24. Just setting out in the world, both with new loves in their lives 😍 so I don't want to nag or push. I also don't want to be a burden to them. I want them to have happy lives, in the greater scheme of things.
I keep reminding myself to go one step at a time. So the first step is to see my psych and ask about driving. Then take it from there. Worrying doesn't help, tho it is hard not to ruminate with so much depending on it!!
There is always the option of working from home in some way. Typing things up or something. It's not over till the fat lady sings!!
Really impressed your symptoms are reduced. You go for it! Keep on inspiring people!!!!
well I don't know if youve figured things out with FND being a part of dissociative disorders but when I went to the therapist she said we all dissociate so I what I understand is that its the brains way of taking a break. I can see how or why my attacks seem to happen more with mental breaks when I watch tv or just sit and talk to someone. It happens when Ive driven in the past and these past few days ive had to sit in and office with my boss watching training videos. A whole lot of mental breaks so what ive done was to write down and focus on something else. Like me and my wife talk and interact while driving. Im fully present and have little to know symptoms, so maybe thats something you can do while driving. Sing songs on the way somewhere or even talk out loud. I sure know that driving and driving without saying much is like a way to have a mental break, especially in the neighborhoods slow and easy.
and last night this morning for you 6am I went to see you to Brisbane gosh dam thats far thats 3 to 4 days easy. Thats like the same for me too. And at least theres a list shoot I know I dont qualify since its 8000 out of pocket and they dont take insurance.
I know thats not like that in Australia right? Americans just want to capitalize any way they can. Yah we know you have a problem thats hard to treat, but theres no one who wants to take you in therapy.
I would have to see a a team of doctors individually to do what that place does in brisbane. And every single one would be totally far out of a number I could possibly afford. Totally talk about a hard place we people are in "I reckon" lol those quotes are cool, makes me smile saying things exotic.
Yah maybe do somethings at home, but I worry about that because me and my wife dont have much to use for help if I was to be at home which Ive been and its definitely harder to handle my body goes hey wire. I just keep moving regardless. No ones taking the weight off my shoulders so I could focus on this, so I just gotta keep getting up regardless of the good days or bad. We say keep trucking!
I hear what you are saying about focus, but I find that my clients talking is also distracting me - I think. I don't know. It's hard to figure out really. The other issue with this job is having to walk distances that I sometimes can't manage. And the randomness of it all. I can't plan short trips with people vs days out.
The health system is fairly good here, if you have something standard. They are very happy to do scans etc. The physio on the other hand is restricted to 6 sessions per year. So it's a bit of a mix. Although a ton better than the US. I don't know how you still have such a large population over there! How anyone survives is beyond me. I would have expected natural selection with only the rich surviving. Lol. Isn't that the goal anyway? Oooo. So cynical.
If I do stop working, I might well start an fnd support group for our area. A physical one where people can feel less isolated. Maybe taking it in turns to be at houses where people are really immobile?
Oh yah definitely about at home or something similar. I mean the amount the amount of time spent at the therapist is what an hour a week? Yah right that wont cover the day to day things that triggers our fnd. Like how a stressful situation isn't healthy or how things happen out of the blue.
Like a live in coach! That would be so sick(cool) if there was some sort of coach that would just observe us like at the treatment center. Drug rehabs have inpatient stays so why cant we? Not ones that are clear across the dam continent like yours and mine. The reason why our prison populations are high and our rehab drug treatments and churches is here in the US they have government grants(free money) for programs like drug centers and things, plus contracts with courts. We also have corporate ran prisons here. Anything people could make money off of they will, hence no treatment centers for us with this. It may be common but its just not sad enough nor money making. Breast Cancer research my butt.
And its just tough for us. We have been told we could figure this out. Im an analyst in nature, a diagnostics person, and someone who figures ways out. So if I knew why I have these problems by now wouldn't you think i'd be on it?
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