Happy Monday my fellow Lymies!
Yesterday on the Lyme Chat, we continued our discussion on symptoms! (Click here if you missed last weeks Lyme Chat on 10-20-13)
Also FYI** I wanted to remind you all again that TOMORROW, Tuesday, October 29th, there will be a webinar on Lyme disease & Bartonella, available to both healthcare professionals and patents, family, friends & pet owners! Please SCROLL DOWN TO THE BOTTOM to find more info/to register as a patient (or pet owner, friend of someone who has tick-borne diseases, etc.) CLICK HERE TO LEARN MORE & REGISTER FOR THE WEBINAR
I was extremely pleased at how the Lyme Chat was going last night…until I was put in “Twitter jail!”
Apparently, there is a limit as to how often you can tweet & RT within a short period of time, as well as within a day! I will be figuring out the best solution to this issue in case it happens again!
Thankfully, this happened at the very end of the chat (there was one question I did not get to ask), but I apologize for all of a sudden disappearing!
Here are the questions from this past weeks Lyme Chat (and my responses):
Q1: How has everyone been doing since our last #LymeChat?
A1: Guess what, I’m really tired! But no surprise there! Typical Lyme Life! #LymeChat
Q2: Have you started recording your symptoms on daily basis? Why or why not? #LymeChat
A2: I recorded symptoms on and off, but for about 2 months write them down every day #LymeChat
I find it’s extremely important for me to at least keep track of my “energy levels” day to day; fatigue is my #1 issue #LymeChat
- If you have not been writing down your symptoms each day, please try to at least write down how your energy levels are each day!
- I personally write down all my symptoms in a plain notebook- small enough to carry around, but not too small where it’s difficult to write in; in case I forget it/or I’m too tired to write something down, I will make a note in my phone so I can write it in later
- For a while I also used the ‘health journal’ by Moleskin (which costs about $20 + shipping)
- Lady of Lyme suggested printing out this weekly calendar, which she then hole punches & puts them all into a binder! Another great idea!
- There is no method that is better than the other, what is important that you find what works best for you-organization is very important!
***See what else may be a good idea to record besides your symptoms here: “Resources for Lymies- Part 1”
Q3: Are you able to tell when you are going to have a good day and/or bad day? Or is it unpredictable?
A3: I never know if I will have a good day or bad day. I experience both in a day, so I take it hour by hour! #LymeChat
- I meant to expand more on this issue, but did not find it fit in the Lyme Chat
- It is my energy levels that I usually am referring to in terms of having a good or bad day- occasionally I’ll have headaches or other aches & pains that make it difficult or impossible to continue through the day
- For the past 5+ years, my life has revolved around taking medication (stimulants) that I take to stay awake; with sleep disorders such as Idiopathic Hypersomnia (IH), narcolepsy, Chronic Fatigue Syndrome (CFS); unfortunately, the medication never works the same day to day
- I still struggle with being able to live in the moment and accepting that I do not have complete control over my health; I will always do what I can in terms of improving my energy levels (such as eating healthy, exercising when I can, sticking to a schedule/routine when possible, etc.) and never give up on finding a way to get my life back from these sleep disorders caused by Lyme disease
Q4: What are 3 symptoms you experience on a bad day?
A4: Fatigue, brain fog, fibro/arthritis pains! (I def had trouble picking just 3!) #LymeChat
This was a great response by an individual during the chat in regards to fatigue…
This is how I try and explain to others, that the fatigue I experience, is not your ordinary fatigue:
It’s Monday morning, 6:00am and your alarm clock is going off- time to get up; you think that there must be a mistake; that isn’t the correct time because you just feel asleep- in the blink of an eye, it went from 11:00pm to 6:00am. As you pull yourself out of bed (which sometimes, I physically have to have someone come and pull me out of bed!), your body seems to weigh a thousand pounds and it’s hard to move because of how heavy it feels.
This an ordinary person feels on a Monday morning, maybe an hour or two, until they get moving, have some coffee, or whatever. This is how I feel 24/7. Thankfully, there are times when my body doesn’t feel like thousands of pounds to drag around, but there is never a time I’m not tired.
In fact, I have become so used to this feeling and the need to take medication to stay awake (and somewhat function, so I can do things like get up out of bed, get dressed, go to a doctors appt, etc), & medicine to go to sleep, that I assume this is how everyone lives. I don’t know what it’s like to ever feel rested or wake up refreshed.
Q5: Do you plan for the “bad days”? If you do, how so?
A5: I take certain meds/take them at different times I normally would on bad days. If I have plans, cancel/reschedule them asap #LymeChat
– I know we all have bad days, but good days are possible too; we must remember never to compare ourselves to others
Q6: Do you plan for “good days”? What do you do on the good days?
A6: I never thought about planning for a good day..until I overdid it when I had one! You can’t do everything in one day! #LymeChat
The one question I did not get a chance to ask was:
Q7: Are you afraid to talk about having “good days” or when you are feeling better? Why or why not? #LymeChat
– I hope to get some responses this week so I can add them here along with my answer!
Read the entire Lyme Chat:
- Lyme Chat via Storify (to see all the pages, you must view this on your computer- includes all participants/responses)
- You also can check out the Lyme chat via oneQube which also includes tweets, participants plus statistics! Thank you TBDA for sharing this!
**Due to my severe fatigue, the topic, “How to handle family & friends; when they don’t understand and/or may not believe that you’re sick” will be on November 10th– The Lyme Chat on November 3rd, will feature all of YOUR questions! If you have a question you want asked during the chat, please send it to me ASAP!**