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can anyone relate to 'the switch'?

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Posted 10/7/2017 8:55 PM (GMT 0)
So this has been happening to me right from the beginning when I had my first symptoms in 2015 (not diagnosed until a year and a half later). I could be feeling totally normal, totally fine and then it's like a switch goes off and I feel so unwell, with a variety of symptoms that seem to come and go, although the headaches are almost always a part of the equation. I get so unbelievably discouraged because I'll start to think maybe I'm finally better and then bam I get hit by a truck, sometimes a small truck and sometimes it's more like a semi!!! Just feel so angry with the disease, it really messes with ones mind in such a big way! My husband has always been amazed because I can feel totally fine and then 5 minutes later I'm lying on the bed saying I don't feel well at all! I'M SO SICK OF BEING UNWELL!!! Sorry I just really need to scream that out!! Thanks for letting me complain! I know I should be so thankful for the times when I feel well and normal...believe me I do, but the old me was always well and normal I miss that me so very much!!!
Posted 10/7/2017 9:17 PM (GMT 0)
Yes, I can relate. This is why I can't go back to work yet.
I never know when I will have a bad day...or bad part of a day.
I can't predict.

Sometimes my day will start out good...and stay good...other times it will change and my symptoms will flare.
Posted 10/7/2017 9:32 PM (GMT 0)
Oh YEAH-you just described me to a 't'!
Posted 10/8/2017 12:24 AM (GMT 0)
Thanks for sharing! It's soooo frustrating!
Posted 10/8/2017 3:05 AM (GMT 0)
Yep! This happens so often. Ill wake in the morning, feel ishy but start feeling better after I get going. I'll promise my daughter we will do something fun in the afternoon because I am feeling good, and then a sudden brick wall of fatigue will hit me just before she gets up from nap and I am done for for the rest of the night.
Posted 10/8/2017 5:53 PM (GMT 0)
I used to feel that sudden "switch". And then I really slowed life down and disengaged with most everything and everyone, which most people can't do. It was forced upon me but in a way, it was a gigantic learning opportunity because it helped force my life into a lower gear, and that's when it became obvious that "the switch" was really my adrenals and other body systems just shutting down, saying "that's enough!"

I wasn't running marathons but I was overdoing it all the time. At first I was overdoing it with exercise and activity--that's what is recommended for Lyme sufferers, to help your body. And I think for some this is very true and for others, it's very problematic (there are also specific activities to avoid, like aerobic). But I've always always been very physical and active my entire life either with sports or dancing or running or working out at the gym, etc. I was also surprised by how much I relied on exercise to help manage stress and maintain good adrenal and sleep cycles.

So then I stopped riding my bike so much and felt fewer crashes. Then I stopped working entirely and the crashes stopped almost entirely. That's when my adrenals FINALLY healed and replenished ---took about 2 years.

And now, when I crash, it's primarily due to changes in my treatment so they're considered herxing. As long as I keep my physical activity and psychological stress to a minimum and if something does occur one day I don't repeat it the next day, I just don't have those huge swings anymore.

My neuro-psych issues, while still lingering, have improved significantly and most of the time I'm less "disassociated" from my body. VERY SLOWLY, I'm regaining strength, endurance, tolerance, and most important is that I'm finally able to recognize when I'm on the verge of overdoing it and I stop--before it's too late and I crash and have to spend days or weeks recovering.

Finally.

-p
Posted 10/9/2017 5:57 AM (GMT 0)
I remember being that way a few years ago. I think that might be why people don't think Lyme is a real thing sometimes because we go from being well and happy to sick so suddenly, like we're faking to get out of something. It's changed for me now because I'm sick so much of the time, but every now and then I have the switch to "on" which is fun. That's always very shocking to my husband and kids! I think they'd all drop dead in shock if they saw me actually cook a meal now! I just wish I didn't start to get all of these plans in my head in the hours my switch is "on." I can never follow through, and then I say, "What was I thinking?"
Posted 10/9/2017 2:34 PM (GMT 0)
Yes i can so relate to the plan making when I'm feeling ok. It's such a crazy disease, in the beginning I was really scared I was going crazy! I'd be thinking I was feeling just fine not that long ago so how could I suddenly feel so sick?! Pirouette, I'm so glad you figured out what works for you, it really is a big investigation to figure out what treatment works, what diet, exercise or not, there is so much to it and no quick fix! I've always been the type of person that struggles with patience, I like to get things done quickly and move on..,so this has been a big eye opener! The one thing this disease has taught me is that I have more empathy for others, I did before as well but now I find I'm so unbelievably aware of how much pain is in this world! We are all so fragile and to never ever take ones health for granted! I'm sending you all healing thoughts!
Posted 10/9/2017 4:27 PM (GMT 0)

1000Daisies said...
Oh yes, I can relate. It does make it such a challenge to plan on ANYTHING for the kids, as you don't know whether they'll be able to do it or not. On one hand, completely shutting down and doing NOTHING is very depressive for kids. On the other hand, I'm so tired of epic failures of trying something, only to be so sad when the kids aren't able to do it after all. It's very depressing for the kids who so desperately want to do activities and are excited to do it, but then crash and can't do it after all.
This is absolutely a terrible disease.

And I agree with PP. I have definitely seen a lot of lack of understanding for my kid's issues, as people will see them functioning and judge based on that... not understanding that our bad days/moments are beyond miserable and we are home suffering were people can't see. So, people naturally judge on what they can see (not everybody does this). And since this is truly a roller coaster for us, with so many ups and downs, that others have a really hard time understanding this.

Having said that, I've been dealing with this for several years now with multiple kids. And I can definitely say that I'm getting more understanding nowadays with this disease because when I talk to somebody, they are like "oh, my brother has lymes for years" or "my friend has been sick for years".... and a lot of people are knowing others who are really struggling with lyme/etc. They tend to be more understanding then. Really hit or miss though, but I definitely see it becoming more "known". Several years ago, it was a very different atmosphere, and I've seen how that he greatly changed in the last several years.

Your story is heartbreaking! I can't imagine what you're going through with your kids having it. It's bad enough dealing with it as an adult and not having people understand. My heart goes out to you. See, THEY are why more doctors and pharma companies need to be working harder on a cure for this! I suspect that many more people actually have this than are showing symptoms and that once something compromises their immune systems, they'll be where we are. The diagnosis is going to become more common as it spreads and as more doctors start to become LL, but that seems so far in the future. I wish the CDC would take this more seriously, especially since this should be preventable. (Sigh.)
Posted 10/9/2017 5:57 PM (GMT 0)
I prefer the switch. It comes hard but is short lived compared to an all day slow drip of feeling not great.
Posted 10/9/2017 6:04 PM (GMT 0)
Alyeska -

I agree with you. I marvel at what these parents of Lyme kids are facing every day and how difficult it must be. They never get time off.

Every time I struggle with something or start to complain when my infusion nurse fusses with multiple IV need punctures or can't get a blood draw or I'm having a painful day or I miss an important engagement or you name it... I often stop myself and think about how kids all over the world are managing far more problems than this. And I think about how difficult it would be to not be able to watch your child suffer this.

And I stop complaining. (usually).

-p
Posted 10/10/2017 4:53 AM (GMT 0)
That is one thing I've always been thankful for is that this is hapoening to me and not my children, so I too feel for you 1000daisies! It's so hard to see your children suffer and not be able to fix it with a kiss and a bandage! I agree that something needs to change in the near future with the CDC, it's really unfair! I know a fellow who was bit here in California in the 90s, he had the bullseye rash for many months but his Lyme test was negative, the doctors kept trying to figure out if it was a spider bite or something else since 'there's no Lyme in California' (yeah right!) he had the same test by done 3 times and the 3rd was finally positive and supposedly through the roof!!!
Posted 10/10/2017 2:34 PM (GMT 0)
Babesia and Bartonella, I'm told, are big causes of mood swings. Mine is a combination of both, and I found, by keeping track of The Switch and my food every day, that it happened a few hours after having dairy or corn. I cut them both, and continued treating for Babs and Bart, and my mood has very much stabilized since. I still get it, but I'm totally exercising a positive attitude toward it. "Here it comes, I'm sorry, it should be gone in a few minutes/hours. Let's think of some happy thoughts."
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