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Post by casa11 on Nov 8, 2017 16:44:07 GMT
Sorry this is gonna be xtra long...
So for the past week I've been super lucky & had the reduction in anxiety that happens on occasion... I know it's really on some kind of cycle, but I keep screwing up as far as being consistent with my Lyme journal...
I know I've got to do better there- every time I go through these symptom changes/ intensity changes etc, I wish I had a journal to refer back to...
Anyway, so I had my week of tolerable anxiety paired with some increased physical stuff, the usual... because I was waiting for eaither my anxiety to reduce a little or to get some help ( finally broke down & went to a phychiatrist for anxiety meds) before restarting the dreaded doxy, i began it again 4 days ago. ( only 1 100 mg pill/ day. Was intending to work up to the prescribed 2X a day today. )
I did have an ok appointment with the phychiatrist yesterday & she prescribed Ativan, which I've only tried 2x before - once for a major grief experience & another time when I had a horrible systematic allergic reaction requiring steroids & Ativan so I could tolerate the steroids. So no clue if it'll help this anxiety, but I hope so!
I wasn't able to get a ride to the pharmacy though/ I'll be able to go today after I see the llmd. I'm really wishing I had been able to go yesterday ! Cause the anxiety is really increasing quickly!
I don't know ( arrrgh! Because I don't keep a proper journal) if this is just the timing typical to my 'cycle', or if it's due to the addition of the doxy. I've also been slowly ramping up my Cumunda ( 4 drops) over the past 3 weeks, so it could well be a combination... Pretty sure it's the normal cycle, but every time it reduces & I get that weeks break, it feels so much more intense when it returns! I'm grateful for the 'week off' but it just overwhelms me all over again when it comes back, and that week off was such a tease...
Anyway, I have started to notice a pattern of how the anxiety increase part of the cycle begins again- I'll be going along on my 'week off' dealing with my mild anxiety, and around the end of the week, I start noticing more general anxiety, ( physical & mental) but also a lot of grief.
I have ( like many of us) had a LOT ( not yelling!) of grief & loss in the past 7-8 years. For awhile it was just losing one person or animal friend or everything I cared about & worked for after another over & over & over... ( repeat many times...)
I do believe this stress ( and some related family stress ) is why my Lyme & co got the upper hand so quickly after many years of insidious creeping...but that's another story...
So dealing with the grief & loss has been an ongoing process & is something I think about / work on each day etc. With being so sick, sometimes I have to allot myself some grieving time & then try to shut it down because it can just make me so much sicker.
But the weird thing I'm noticing about the increase of my anxiety symptoms is that I start having a lot of feelings of grief mixed with the anxiety as it's ramping up to full throttle. It doesn't stay that way the whole way through the cycle though- (& this time I'm going to write it down so I know just how long the extra/ different kind of grieving goes on.)
I try to just let myself accept & feel the emotions, cry if I need to, honor the memories of those I lost etc. But ( I'm probably not explaining this well) it feels like the Lyme ( or co's etc) is somehow causing this as well. It doesn't feel like normal grief.
Now I'm probably going to sound really nuts ; but I kinda feel like Lyme& co's are so smart they've invaded my brain & know just exactly what buttons to push to hurt me the most... silly thought, I know... but still...
I wonder if it's because I had so much hit me at once ( and I'd lost my support system too) that I wasn't able to properly go through the many different grieving processes I needed to at the time, so things are just popping up now- as I can process them? Or if it's actually part of the disease?
Anybody else experience this increased / different kind of grief - anxiety as part of these diseases?
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Post by casa11 on Nov 8, 2017 17:17:22 GMT
Haha... by the way...I can't believe I let my llmd force me into an appointment the day after the phychiatrist appointment. I've repeatedly had to explain why I physically cannot do this,( you'd think she'd understand!) yet she continues to schedule me this way. Last time I was so tired of fighting her about rescheduling that I just gave in... hahahaha- the joke is totally on me! Can't believe I actually thought I'd be able to pull it off! I must've been fantasizing that I was someone else . I am gonna try though , cause her cancellation fee = her office fee, so...
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Post by Admin/ Traveler on Nov 8, 2017 17:42:33 GMT
Oh Casa, I'm so so very sorry. For me, the mental aspect of this disease can be much harder to deal with than the physical - and I've had more than my fair share of the physical issues to compare to. It could be a cycle controlled by the bacteria in a way - as symptoms DO cycle, even the mental/cognitive symptoms. They could also be more due to the cycle that our female hormones follow as well - higher estrogen during our 'cycle' will definitely lead at least some of us to feel more emotional. And, once we are feeling that way, lots of those 'regrets' and losses seem to 'float' to the top. **By the way, I feel that if we only use all caps for one or two words, we are only super emphasizing those words, not that we are 'yelling'. I hope that allows you to be able to better express yourself. I think trying to keep your journal more up to date is a really good idea. Finding patterns means we have a better chance at breaking them or strengthening them, depending on if it's something we need or not. This holds true for many patterns in our life. So, how about we let you know some of the things we do to deal with these issues, then you can try some to see if they will help you? My biggest help in dealing with the emotional side of these infections has been mindful meditation. This is not like what most people think of when you say meditation, as I don't sit still to do it (although that was how I started out), it's just a part of every step of my day - keeping 'in the moment' more and more- especially on those hard days. Today, my very low back is out and because of that, I have a migraine coming on (oh goodie - NOT), and so I know that I need to stay very much 'in the moment' or I'll be hiding out in the bedroom and not wanting to talk or do a thing - and then I don't feel good because I have too much time on my hands to allow my brain to wander! A catch 22 for me. So, I took one of hubby's migraine meds and I'll see how I do. Some pain will lead me to an emotional state as well. In case you are interested in more: Mindful meditationmindfulness, how to do it I will also raise my anti-inflammatories, because brain inflammation can cause or raise anxiety and anger issues - at least for me. I use turmeric and ginger mainly, but will add in bromelain if it doesn't resolve or get controlled well by just the ginger and turmeric (with black pepper to increase it's bioavailability). Remember this is temporary in the 'big picture' of our lives. You WILL get to a point where your symptoms are at least better controlled. I often would repeat this to myself, even if I didn't fully believe it right then!! Let's face it, one week with high anxiety feels like an eternity!!! And, for me, it helps to bury myself in helping others. It's really quite simple, if I'm deep into helping others (when my symptoms allow it, migraines work against being on the computer!), I'm not really thinking of myself. Some days it was critical for me to bury myself, but it's gotten much better and I just do that once in a while, when my brain is really inflamed due to a new treatment or new/raised doses of something I'm already taking. Bartonella treatments used to do this to me a lot, but now it's happening more when I change something that affects my immune function/levels. Hopefully, others will be posting soon too to share their ways they have found to deal with these things!
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Post by casa11 on Nov 8, 2017 18:15:11 GMT
Hi Traveler!
Thanks so much for responding- especially with a migraine coming on - they're awful! I hope the med you took keeps it from getting too outta control!
My hormones are definitely still out of wack...you're right there! It's quite possible they're causing some "stuff" to surface!
Also thanks for the support & suggestions. I will try the mindfulness meditation. Funny, I used to do it, but lost it somewhere along the way... and totally forgot about it.
I'll also try to up my anti inflammatory stuff. I use MSM, vitC, turmeric ( prob not enough though) and ginger tea... might also be some others I'm forgetting though... and I do need to get some black pepper to go with the turmeric.
And you're so right about helping others being the best medicine! After my boyfriend died, I took on 2 care taking positions one after the other... of course I can't do that anymore- can barely take care of myself now... but I will try online instead.
Anyway, here I go to try and get ready for this crazy llmd appointment! Wish me luck!
Ps. I really really hope your back / head feel the best they possibly can today- you're so kind & helpful ! Thanks again!
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Post by Admin/ Traveler on Nov 8, 2017 18:29:42 GMT
Thank you, Casa! Yes, the meds are starting to help. Boy, do I hate migraines!!! Oh!! I'm so so very sorry to hear about your boyfriend!! That's really rough!! Well, online is the only way I can help people, and it's helped me - I sure hope it helps you too!! Just remember, not to give 'too much' - we have to put our own health first, but it can be so helpful to help others to get away from our own problems, at least for a bit most days. Always - the best of luck wished!!!!
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Post by casa11 on Nov 8, 2017 19:53:44 GMT
Thanks Traveler!
Glad the meds are starting to work!
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Post by alyeska on Nov 10, 2017 6:52:07 GMT
Casa,
I haven't had a chance to get on here in a few days, so I just saw this, but I'm with you on the grief thing. I've lost both of my parents in the last few years, and that really amped up my symptoms. I didn't know I had Lyme until two years ago, but looking back it definitely made everything so much worse. I have some major problems with my oldest son too, so there's been a lot of grieving there over the years even though he's doing fine at the moment. (He's 17 and has been dealing with addiction since he was 13, in and out of rehabs.)
For me it's very obvious that things get worse with stress and grief. My elbows and wrists hurt so badly that I couldn't brush my hair when my mother died. I had to stop riding horses then also because there was no way I could saddle one, and that was my main form of exercise at the time. I was going to cut my hair because it dreds really easily, but my husband likes it long and said to let it dred. It was not a good look on me, but I kept it that way for a year until it got so heavy that I couldn't sleep. I couldn't carry the heavy bags of animal feed anymore either or take the dogs on a leash anywhere. I had to stop doing a lot of stuff, and my kids and husband had to take over. Now I can't even carry groceries some times, and I rely on dry shampoo a lot!
These last few months our oldest son has been home from his last rehab, I've stop the antibiotics, and the stress is pretty overwhelming. I'm just so glad that I've found all of you to vent to and to bounce ideas off of. I take anti-anxiety meds when necessary, but I haven't found anything that I want to try for feeling down. I think I was at my very worst last week when I vented on here. I was so glad there were people here to tell me it was ok and that I'm not alone. It's difficult when people don't understand and those closest to you don't have Lyme or even really know what it is.
I just want you to know that you are not alone. I can relate to so much of you say. I wish it weren't the case for either of us, but at the moment it's just miserable. I keep praying, and I try to keep hope alive. After last week, I've found that if my chemicals are off, I can have the worst attitude. For years I tried to offer up my suffering for others who were in worse situations than I am, and I still do that, but now I'm actively looking for new treatments all of the time. There are so many of us out here suffering! There has to be something better coming soon! I just wish it were a "one size fits all" kind of cure so we could all get completely healed at the same time. I'm just going to keep trying new things...very slowly, as I learned I need to last week.
Hang in there, and I'm sending positive energy/ prayers (whatever you want to call it) your way! Don't give up!
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Post by Admin/ Traveler on Nov 10, 2017 20:11:55 GMT
Casa, I haven't had a chance to get on here in a few days, so I just saw this, but I'm with you on the grief thing. I've lost both of my parents in the last few years, and that really amped up my symptoms. I didn't know I had Lyme until two years ago, but looking back it definitely made everything so much worse. I have some major problems with my oldest son too, so there's been a lot of grieving there over the years even though he's doing fine at the moment. (He's 17 and has been dealing with addiction since he was 13, in and out of rehabs.) For me it's very obvious that things get worse with stress and grief. My elbows and wrists hurt so badly that I couldn't brush my hair when my mother died. I had to stop riding horses then also because there was no way I could saddle one, and that was my main form of exercise at the time. I was going to cut my hair because it dreds really easily, but my husband likes it long and said to let it dred. It was not a good look on me, but I kept it that way for a year until it got so heavy that I couldn't sleep. I couldn't carry the heavy bags of animal feed anymore either or take the dogs on a leash anywhere. I had to stop doing a lot of stuff, and my kids and husband had to take over. Now I can't even carry groceries some times, and I rely on dry shampoo a lot! These last few months our oldest son has been home from his last rehab, I've stop the antibiotics, and the stress is pretty overwhelming. I'm just so glad that I've found all of you to vent to and to bounce ideas off of. I take anti-anxiety meds when necessary, but I haven't found anything that I want to try for feeling down. I think I was at my very worst last week when I vented on here. I was so glad there were people here to tell me it was ok and that I'm not alone. It's difficult when people don't understand and those closest to you don't have Lyme or even really know what it is. I just want you to know that you are not alone. I can relate to so much of you say. I wish it weren't the case for either of us, but at the moment it's just miserable. I keep praying, and I try to keep hope alive. After last week, I've found that if my chemicals are off, I can have the worst attitude. For years I tried to offer up my suffering for others who were in worse situations than I am, and I still do that, but now I'm actively looking for new treatments all of the time. There are so many of us out here suffering! There has to be something better coming soon! I just wish it were a "one size fits all" kind of cure so we could all get completely healed at the same time. I'm just going to keep trying new things...very slowly, as I learned I need to last week. Hang in there, and I'm sending positive energy/ prayers (whatever you want to call it) your way! Don't give up! Just wanted to agree with this!! I too have had some extremely dark time and experiences with these infections - and I've seen others go through more than I have - but that doesn't change how hard it can be to get through these times for me. We are all here for each and every one of you!! This is a GOOD community, where we can come to get understanding, support, and hopefully some help.
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Post by livingfree on Nov 10, 2017 23:31:17 GMT
Casa11, I'm sorry to read of your struggles. Anxiety is awful!! I hope you are feeling better today.
As far as journal keeping, I started with a calendar. A journal overwhelmed me, as I felt like I needed every little detail. With a calendar (one with big enough squares to write in) I could just write a word, or emoji face to show how I was feeling. It also was easier for me to see a cycle. I can remember mentioning to Traveler that I was "off" every two weeks, like clock work. She asked me to look at my calendar and check it for moon phases. Yep! That was it. It was easy to spot having it written like that.
Just a suggestion.
Hugs for happiness!!
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Post by alyeska on Nov 12, 2017 5:02:01 GMT
Casa11, I'm sorry to read of your struggles. Anxiety is awful!! I hope you are feeling better today. As far as journal keeping, I started with a calendar. A journal overwhelmed me, as I felt like I needed every little detail. With a calendar (one with big enough squares to write in) I could just write a word, or emoji face to show how I was feeling. It also was easier for me to see a cycle. I can remember mentioning to Traveler that I was "off" every two weeks, like clock work. She asked me to look at my calendar and check it for moon phases. Yep! That was it. It was easy to spot having it written like that. Just a suggestion. Hugs for happiness!! Wow, what a great idea! Thanks for posting it! Leave it to Traveler to come up with something. :)
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Post by Admin/ Traveler on Nov 12, 2017 17:55:24 GMT
Casa11, I'm sorry to read of your struggles. Anxiety is awful!! I hope you are feeling better today. As far as journal keeping, I started with a calendar. A journal overwhelmed me, as I felt like I needed every little detail. With a calendar (one with big enough squares to write in) I could just write a word, or emoji face to show how I was feeling. It also was easier for me to see a cycle. I can remember mentioning to Traveler that I was "off" every two weeks, like clock work. She asked me to look at my calendar and check it for moon phases. Yep! That was it. It was easy to spot having it written like that. Just a suggestion. Hugs for happiness!! Wow, what a great idea! Thanks for posting it! Leave it to Traveler to come up with something. Alyeska - living with these infections for 46 years has to count for something!!!!
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Post by casa11 on Nov 13, 2017 22:36:36 GMT
Casa, I haven't had a chance to get on here in a few days, so I just saw this, but I'm with you on the grief thing. I've lost both of my parents in the last few years, and that really amped up my symptoms. I didn't know I had Lyme until two years ago, but looking back it definitely made everything so much worse. I have some major problems with my oldest son too, so there's been a lot of grieving there over the years even though he's doing fine at the moment. (He's 17 and has been dealing with addiction since he was 13, in and out of rehabs.) For me it's very obvious that things get worse with stress and grief. My elbows and wrists hurt so badly that I couldn't brush my hair when my mother died. I had to stop riding horses then also because there was no way I could saddle one, and that was my main form of exercise at the time. I was going to cut my hair because it dreds really easily, but my husband likes it long and said to let it dred. It was not a good look on me, but I kept it that way for a year until it got so heavy that I couldn't sleep. I couldn't carry the heavy bags of animal feed anymore either or take the dogs on a leash anywhere. I had to stop doing a lot of stuff, and my kids and husband had to take over. Now I can't even carry groceries some times, and I rely on dry shampoo a lot! These last few months our oldest son has been home from his last rehab, I've stop the antibiotics, and the stress is pretty overwhelming. I'm just so glad that I've found all of you to vent to and to bounce ideas off of. I take anti-anxiety meds when necessary, but I haven't found anything that I want to try for feeling down. I think I was at my very worst last week when I vented on here. I was so glad there were people here to tell me it was ok and that I'm not alone. It's difficult when people don't understand and those closest to you don't have Lyme or even really know what it is. I just want you to know that you are not alone. I can relate to so much of you say. I wish it weren't the case for either of us, but at the moment it's just miserable. I keep praying, and I try to keep hope alive. After last week, I've found that if my chemicals are off, I can have the worst attitude. For years I tried to offer up my suffering for others who were in worse situations than I am, and I still do that, but now I'm actively looking for new treatments all of the time. There are so many of us out here suffering! There has to be something better coming soon! I just wish it were a "one size fits all" kind of cure so we could all get completely healed at the same time. I'm just going to keep trying new things...very slowly, as I learned I need to last week. Hang in there, and I'm sending positive energy/ prayers (whatever you want to call it) your way! Don't give up! Just wanted to agree with this!! I too have had some extremely dark time and experiences with these infections - and I've seen others go through more than I have - but that doesn't change how hard it can be to get through these times for me. We are all here for each and every one of you!! This is a GOOD community, where we can come to get understanding, support, and hopefully some help. Ok, alyeska - so I'm trying the quoting thing again, ( I've not had much luck with it so far) because I've wanted to respond to your post for a few days now & my brain fog is SO bad that by the time I get to the screen to post my reply, I've totally forgot what yours said & what I wanted to say in return! So sorry for the late reply! Thank you so much for sharing your experiences with grief & stress & how they affect your symptoms.,. I'm sorry about your losing your parents & how it amped your symptoms up & that you had to stop riding horses because of your increased symptoms. That just sucks. I'm glad your son is doing well! That's wonderful! I cant imagine the stress of having to watch your child struggle with addiction! Thanks so much for all the positive words & energy /prayers you sent my way! I'm so grateful I found this forum ... thanks guys. Sorry my brain is still not working so well... I'm sure this post doesn't say all I'd like it to, but it's just one of those days.
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Post by casa11 on Nov 13, 2017 22:38:19 GMT
Yes , Yes, YES! I finally did the quoting thing sorta kinda right! This makes me ridiculously happy! 😁
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Post by casa11 on Nov 13, 2017 22:42:30 GMT
Hey livingfree, thank you for the kind words! Also , thanks for the suggestion about the calendar, that's a great idea. I used to do that when I had litters of puppies, I'd get a desk calendar and write all their info in the big squares. Never thought to do it for myself... haha .. Next time I'm out I am definitely picking up a desk calendar!
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Post by Admin/ Traveler on Nov 17, 2017 20:38:44 GMT
Casa, We are grateful that you are here with us as we all go through our trials with these infections!
You are doing well with the forum - so just hang in there! And remember to ask questions about the forum as well as about what you are dealing with as needed!! One of us should be able to be of help!
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