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Hope - or insanity???

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Posted 8/26/2021 5:59 PM (GMT -5)
Yesterday, I had the best day I’ve had in a long time (months). I felt good in my body and almost like my old self. By bedtime, I was thinking and planning what I was going to do next (yard work and such).

Today, I had OCD all morning, on the internet obsessing over COVID. This afternoon, I was irritable, angry, chemically sensitive, with lower body pain and foot pain when walking.

Even after years of constant symptoms like numbness, burning, the bizarre miseries of mold and chemical sensitivities, joint stiffness, pain, etc, even just a partial day of feeling good and like myself will have me automatically thinking (and planning) how it’s only going to get better from there.

Is this how hope manifests itself, or is this some special form of insanity rooted in cognitive dysfunction?

I have done this many times over. It’s laughable!!

Does anybody else do this?
Posted 8/26/2021 6:25 PM (GMT -5)
It's resiliency! It makes complete sense that we embrace feeling okay when it happens. Don't overdo it, but definitely soak up the good days.
Posted 8/26/2021 7:35 PM (GMT -5)
I understand exactly where you are coming from. I have days like that where I feel really good and I start planning for the rest of my glorious life. Of course it soon all comes crashing down. Rinse and repeat for eternity. I think this is a significant contributor to the psychological suffering of this disease. You get a little hope and then it’s ripped away….over and over again.

I’m literally going through that now. Previous week wasn’t great, but it was better than recent history. The last two days have been awful and I get down in the dumps again.
Posted 8/26/2021 8:17 PM (GMT -5)
Well it's been a real roller-coaster for me, up and down--I've had a few days of productivity, even started exercising again, there is still stress though; and I get psych. symptoms depersonalization, irritable, rage at slightest frustrations, and though I feel my body physically getting stronger and more aligned from yoga/stretches/movement light housework and lifting, my mental health seems to still suffer, still not getting refreshing enough sleep, and my weakened muscles seem like they are barely recuperating.. the mental side for me is weak...the pangs of herx/die-off or untreated Bart/Babs and mold, the aching muscles and joints, headaches, it's been a rough month, but I had a few moments of energy and hope to continue with some light stress work and more exercise.
Posted 8/28/2021 10:12 AM (GMT -5)
yep - i am with those who view it as a positive thing - a sense of hope and connection with a better possible future.

i think without this connection it might be possible for us to stay so low and depressed and have no imagination of what a better future might look like that our mind cannot help our bodies out with the recovery

that said i know some people kind of cycle high and low - getting their hopes up and then feeling they are dashed on the rocks as things don't always go as well as hoped - and feeling beaten up by the process - so thats not ideal

i think there is a balance in celebrating the good days - and imagining even better ones - yet being realistic that the road to recovery for most of us is less of a straight line - just better every day - and more of a kind of jagged zigzagging line so some good days and some bad ones but generally overall moving in the right direction.

i think of it like an athlete - you have to really want to win - to do all the training and eventually to win. but if you are crushed by every defeat you will never get anywhere.

lyme is similar - there will be many challenging events - you will not come out in the top spot or where you hope to be in all of them - but if you keep putting the work in you will improve over time.
Posted 8/28/2021 12:01 PM (GMT -5)
It's like someone is toying with your life when that happens. The hope is that one day becomes tow, then three.... But it seems what happened to you is what takes place instead.

After having this for so many years, I've learned not to count on tomorrow - just wait until tomorrow comes. For that matter, I've learned what I feel at 10:00 am may and usually does change by 3:00 pm. There are times, often lately, where hope fades. But then I remind myself I did have 20 months of remission before, and others on this site are experiencing lesser symptoms now. It's just hell getting to that point.

And I like your line, WBF - "or is this some special form of insanity rooted in cognitive dysfunction?" Great line.
Posted 8/28/2021 12:38 PM (GMT -5)
So because I’m always worried what new treatments will do to me, in order to try a new treatment I have to talk myself into thinking it will solve all my problems, even if another part of me knows this is highly unlikely. So often I’m like planning my triumphal return to life while also wondering if I’m about to die. Granted I wasn’t truly scared I might die until a month or so ago.

I was talking to a friend about how it’s really upsetting not knowing whether I should keep trying or make peace with death and she remarked yes it’s a well known upsetting thing, that happens to be the psychology they strive to exploit when they torture people (never sure if they should try to live or give up).

So yes, the roller coaster of hope vs acceptance of bad outcomes is very upsetting.

Post Edited (Bailey) : 8/28/2021 11:41:25 AM (GMT-6)

Posted 9/1/2021 2:51 PM (GMT -5)
Yes, that exact feeling so many times. There’s been so many ups and downs. I would have a day of feeling good and want to clean the whole house and make all these plans and start thinking about what I’ll do tomorrow. That never ends well lol.
I think the hardest is when you experience feeling like your true self for a period of time and you feel hopeful it will all just be over. No more lyme treatments or worrying about my diet and detoxing.
Sometimes when I would be feeling well I would completely forget about my memories of being so sick. And when feeling well forget that I ever felt well before. Almost like amnesia. I think bc I felt like a different person and I felt like the sick me is a different person if that makes sense. 2 different people vying for control.
Posted 9/1/2021 10:13 PM (GMT -5)

Sarahjane09 said...
Yes, that exact feeling so many times. There’s been so many ups and downs. I would have a day of feeling good and want to clean the whole house and make all these plans and start thinking about what I’ll do tomorrow. That never ends well lol.
I think the hardest is when you experience feeling like your true self for a period of time and you feel hopeful it will all just be over. No more lyme treatments or worrying about my diet and detoxing.
Sometimes when I would be feeling well I would completely forget about my memories of being so sick. And when feeling well forget that I ever felt well before. Almost like amnesia. I think bc I felt like a different person and I felt like the sick me is a different person if that makes sense. 2 different people vying for control.

I hear you about cleaning the whole house and making plans, and then the crash, the technical term I learned is"post-exertional-malaise"

Like to forget one is sick, maybe feel better, then the flare-up, an alarming reminder... the way you describe is so uncanny, I can relate! This disease messes people up! I don't know how else to say it!! It can't be believed unless you've experienced it!! like a different person
Posted 9/2/2021 12:35 PM (GMT -5)

Cignet said...
I get this. I also get it when trying something new or when there's a new approach to try. The worst part is when the new approach doesn't yield much in the way of results.

It's horrible. I just want to heal but I dunno. It's brutal going from failure to failure. I'm honestly losing the will to live and I feel like I'm going insane with depersonalisation etc.

You'll hear plenty of platitudes in response to this type of statement, and I do think there is wisdom in keeping a positive frame of mind when it comes to dealing with chronic illness. I find it almost impossible to heal if you have given up hope. However, I understand where you are coming from. I have found the idea of non-existence or a long dirt nap more and more attractive as my illness has traveled from days to weeks to months to years.

Here are some truths that have helped me. There are about 8 billion humans who are alive today. The best estimate for how many humans have ever existed is over 100 billion. This brings me to a story my dad told me as I was about to ship to basic training. My dad had been through both basic training and officer candidate training. One of the ways he helped get through it was to look around at all the over the people going through it with him. He thought "if that fool can do it, then surely fools before him did it, therefore I know I can do it. Just imagine, billions and billions of people before you went through the cycle of birth, growth, peak, decline, death. Of course, not everyone made it to all those points, but everybody that has ever lived made it to at least birth. If they could do it, so can I, and so can you.

Become more aware of your thoughts. Try not to let your thoughts about the disease cloud your mind. I know this incredibly difficult. In fact, for myself, it is impossible when the disease symptoms are raging and it's seemingly impossible not to notice the sense of disease arising in consciousness. However, when possible, try to focus on the present. Try to focus on the now. Try to focus on things other than the disease. When I'm able I like to play basketball, exercise, read, study, listen to music, and visit family and friends.

Remember that this illness is not a quick death sentence for most. Remember that countless have regained quality of life even if they don't exactly go back to "normal". There is hope even when it doesn't feel like it. Good luck and use these support communities when needed.
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