#I have cfs so I ALWAYS feel like that & any time I've been ill I'll always have a flare up

[cruelsister-moved2]

I clearly had covid at some point recently because yesterday I tried to eat a packet of salt and vinegar crisps and they tasted like there had been some kind of toxic chemical spill at the factory, today I ordered more to make up for it and they were the same, at which point I made lewis try one and confirm they taste normal so it's something with my taste and then I sniffed a bottle of rice vinegar and it smelled the same way. literally like burnt rubber and nail polish remover to me.

at least it's just vinegar and not anything I'd eat more often but it's literally making me question reality when my brain is just making up this smell/taste out of nowhere?? did anyone have anything similar and did it get better. because idt I can live without salt and vinegar crisps or balsamic vinegar or sushi!!

[samtheflamingomain]

new diagnosis, who dis?

Well boys, she was a good temporary label, CFS was, but the science has finally caught up to my galaxy brain.

And that galaxy is uncharted territory.

I've got "idiopathic hypersomnia" (IH). I love when they say what they mean. Translated literally from Latin, it means "too tired (hyper+somnia) without explanation (idio+pathic)". Because it's shorter to say, will require less explanation, and the two are almost the exact same disease, I'll be referring to it at narcolepsy type 2.

There's no cure, no treatments, and few studies. The few that have been done show absolutely no improvements, and all end with "inconclusive". Long story short, nobody gets better once they get sick, usually around age 21, just like me, and it's all downhill from there.

Let's just quickly describe it for clarity. Narcolepsy 1 causes tiredness and sudden muscle paralysis or "sleep attacks" and traces back to a gene mutation that's treatable. N2 is characterized by having extreme tiredness but no paralysis, and no association with that N1 gene. You have to be sleeping an average of 10h/night (check) and have a normal-looking sleep study (check). The reason my doctor changed me from CFS to N2 is because a) he only just learned of it and b) I don't have a lot of symptoms of CFS, pretty much just the tiredness.

Practically, nothing has changed. I'm still fucking tired. But now I know there's a near-0 chance that I will ever feel awake again.

CFS patients are about 50/50 when it comes to successfully managing fatigue with medication and making life mostly "normal". A lot like depression, it can become a matter of throwing a dart at a board of drugs to try and hoping one's a bullseye eventually. Now there's no board.

So... not the best news. In fact, this is probably the worst news I've ever received. In one 45-minute phone call, any hope I had of getting better was completely obliterated.

My psychiatrist has been working with me for about 6 years. I've tried every drug under the sun for every goddamn mental illness, but there's one (1) symptom that has never, ever changed: my level of exhaustion.

While tiredness is a common feature of mental illness, every single time my psychiatrist asks what my biggest concern is, it's that I'm still tired. 10/10. I'm currently on the highest dose of Adderall and I don't have ADHD. I should be tripping on meth, but instead I'm nodding away as I type. It's a good thing I've never given into the obvious temptation of doing cocaine, because even cocaine would not make me wake up.

I've never had jet lag, but other people who have N2 find it helpful to explain that it feels like you're always living with jet lag. For me, it's like living with an anchor around my brain weighing it down. The kind of tired that just absolutely knocks you on your ass.

And it never. Ever. Ever. Goes. Away.

In many ways, I'm grateful to have found my forever diagnosis (hopefully). I scored a perfect 50/50 on the diagnostic test, and alongside what appears to be a completely normal sleep study, I'm pretty sure they've finally gotten it right. It's common enough that it's being studied, but rare enough that there's not much money in making drugs for it. So I'm extremely, extremely depressed and hopeless.

I thought one day I'd be better. I really did. I'm a pretty jaded person, but today I realized just how much holding onto that sliver of hope that I'd one day "wake up again" was keeping me together. I've always wanted to travel the world. That's out. Same with holding down a full-time job. CFS, like depression, can be hard to treat - but it's almost never impossible. Now the opposite is true. Chances are 99/100 that I won't live long enough to ever wake up rested ever again in my entire life.

If I'm not living to hopefully one day get better, what am I living for at all? I always say I can't imagine living another week/month/year of this, but I always do, because there was always that chance that the right medication was just around the corner, and my life would "begin" again.

But now, the "right drug" isn't "just around the corner" - it's stuck in traffic on the DVP West at rush hour. From the day a disease gets recognized to the day it's cured is not going to be any less than 15-20 years.

I'm seeing my family doctor (GP) in a week. At that appointment, I will be requesting a MAID evaluation. One cannot obtain legal euthenasia in Canada when you only have a mental illness, or an illness where recovery is possible. Now, I have an incurable neurological disorder with 0 quality of life.

I'm not waiting another 7 years. I'm not waiting another month. I did my time. If I'd known it was never going to change from day one, I wouldn't have bothered slogging through it. So why keep going now?

Maybe I'll stick it out a bit longer, try and experience a few things on my bucket list, but 90% of that list involved me one day being awake.

This is it. The last straw. The final card in the shitty hand I was dealt in life. Deal me out.

[weabbynormalblog]

You got this!

Failure is a good thing...What???

In my experience it breeds strength, courage, conviction and belief in oneself!

That's right every step count; even if it leads to failure. Just another learning moment.

Perfection is something we all strive for at one time or another. The error free post, the ultimate cake, meal, artwork, skill, trade or even apparently phone call. We all do our best however our best often isn't always perfect. Success at anything usually requires commitment, a solid plan, consistency, knowledge and a wide variety of skills in order to successfully achieve realistic goals. Usually an optimistic big picture approach and managing daily details are the steps that lead to overall sucess. As humans we fail time and time again, success can seem fleeting and quite elusive at times especially when frustrated.

Failure really is only a complete failure when you give up forever. Like Anthony Bourdane. Suicide ideation is not "normal" behavior or anywhere near healthy thoughts. It's the red flag. It's the failure to thrive while being overwhelmed consistently.

Happiness and joy is available to everyone, regardless of situation or station. It's a choice, another option a better possibility.

It is attainable! Take responsibility for your own happiness!!! Don't let yourself be defeated by one little moment in a bazillion of moments that come in a lifetime! Success and failure are a matter of belief. Stop that degrading story playing in your head, that you'll never be better. Start saying what is easy, what is working; go down that check list if you have to. Never measure your self worth to others. We are all unique while being quite alike too. Weight the positives and agree to improvement on the negatives. It's all good! Change your vocabulary and thinking to a more positive mind set. We do ourselves a great disservice by comparing and analyzing who we are in retrospect to others. Judging our performance, philosophy, our earnings and material wealth. We are way more than the 10% of what people see.

I learnt by failing that I don't need to be successful or perfect at anything to be happy. I can enjoy the moment regardless of handicap or pain. That's a big realization in terms of adaptation and self acceptance! My therapist said pay attention to my thoughts, all of them, not just the good ones. And I am. I went to Giant Tiger to pick up some odds and ends and was stuck in a huge line at the check out. My endurance somewhat fleeting. I employ stretching and moving around while waiting. Extreme pain in my head, just breath slow in out sit in the pain and breath through it. I survived. Learning curve don't go at lunch time silly. Understanding our pain, our limits and abilities is a good start in the healing process. It's a big deal so I'm sharing it with you. It helps and works. Practicing mindfulness, energy management, a shelf life for your emotions, good sleep hygiene, the Yoga and a process free raw food diet. I even imagine it all chipping away at my disease. I'm starting to see results now in shifting my mind set. There may not be a "cure" for CFS mental illness etc or what terrible situation has befallen you, there's still hope for you to change, adapt and to create your own joy. Try out something that will bring some relief, you never know where that will lead you. Little by little, tiny beautiful bunches of happiness and success. So I'm going to keep working my schedule no matter how grim and depressed I am. I'm going to continue to rock my adaptation by not giving in to the fear of failure, lack or the unknown. I put in the time to go out to socialize and play music once a month because it's good for me even if I have to leave early or don't even get there. There was still lots of little steps of success throughout my day. I've been working hard on my stamina and energy consumption by practicing the standing, walking, singing and playing guitar. I was caught off guard by the crippling physical exhaustion. Next time I'll try an afternoon meditation session or even a power nap on music outing night. The smooth ride was over. Overdoing any type of activity can leave me in jeopardy of injury. Like loosing physical balance; I've injured myself enough to know no thank you body, I'm listening. Often I'm in bad shape for days with flu like/sun burn/tin man symptoms.

Ok fine, body you win this one.

Failure aside, I still got out of the house. I interacted with other humans and did something that brings me joy. I find when I'm not attached to the outcome, results or expectations, my moments can be enjoyable in spite of my body. Suddenly any down time becomes worth the little bit of enjoyment. Its about the quality of those moments and those were some good quality moments. Not a complete failure as I first thought. Yes it was depressing that I couldn't physically get through 3 songs this time. What does this inability means for my physical health in the future? Then the fear old me. New me however what I did perform, I did do justice! This is to be expected, the no more energy thing. This is my normal now. It's the nature of the beast. And I was pacing myself. I guess it doesn't matter that my practicing was successful or consistent because it suddenly became nul and void up against illness. I got to be realistic here. Yes CFS is a real fucking thing! It's like the narrow mindedness that comes with "flat worlders" have friends all over the globe. My CFS/TBI clearly cut me to the quick. It let me know who's bitch I really am. No more performing of any kind tonight! The old me: I was so bummed, ready to pack it all in, no cure; minimal enjoyment and relief. Ensuing some kind of abusive self harm behavior, the old me. The new me: Ok, so it was too much for me this time. Maybe not the next. It happens to lots of people. I know exactly how Lady Gaga feels. My body and mind gave out mid performance. Severe dry mouth, balancing and memory issues. It was awkward. I was somewhat dumbfounded. I had to stop singing and playing guitar or I was going to wipe out on the stage damaging lots of nice equipment and instruments. I can't keep putting myself at risk of falling. With chronic fatigue (insert auto immun/mental disorder)etc. Safety is an issue. You literally have no choice. Your tiered body/what's broken wins. Sometimes in extreme ways. I'll rest, dust myself off and give it another go another day.

I'll keep at it. I have too! I will not let illness dictate my life. I'll find a way to live with it, cure it or kill it which ever comes first.

For love the of myself, my offspring and all the others suffering.