posted
Hi everyone. I wanted to start a post that documents tips/tricks that you guys have discovered during your Lyme (borreliosis) journey just to get through the day.
I have no diagnosis as of yet but really feel I have the borreliosis bacteria (of some form or other) invading many systems of my body.
This has made daily functioning difficult at best.
I will not be able to get the Igenex test done for a little while (not to mention pay for a LLMD/medications out of pocket since I cannot work due to this.)
I thought you guys must have some pretty good daily functioning tips since most of you have been suffering with this for an unimaginable amount of years.
I have even come up with a few tricks of my own.
When reading for school I use a bookmark to sort of highlight the line I am working on (as the lines and words all bleed together and my eyes seem to jump around)
I also read for short periods of time and then take a break as it gives me pretty bad headaches (which I have never had in my life).
I then return to my reading after my eyes have rested.
I write everything, EVERYTING, down. I keep one little book that I carry everywhere with things to do, follow up on, ideas I have, and any other thing that pops up because I will SURELY forget it.
Last but not least exercising. I used to be in impeccable shape. Worked out EVERYDAY. I am talking TOUGH workouts. I can't do that now as I find after I did once or twice I really paid for it for a couple of weeks.
But working out is too important to my health so I have decided to do very short intervals (like 5 min MAX) for the next couple of weeks and listen to my body to see how I can proceed.
I will focus mainly on yoga...and see how I can proceed from there. I WILL get back to my former level of fitness. I WILL.
I have accepted there is not a lot of stuff I can do RIGHT NOW but deal with this.
But I still want to live my life, which I have not been doing for months now.
So i am determined to find a way to get my life back as much as possible for now until i can pursue testing/treatment.
I would LOVE to hear your tips because I know you guys are beyond the experts here (forget the charlatan doctors).
You are not only educated beyond compare BUT you LIVED this. And you are all survivors. Warriors really.
-------------------- Lisa Posts: 16 | From new jersey | Registered: Mar 2009
| IP: Logged |
bettyg
Unregistered
posted
hi lisa; good list you started.
be around SUPPORTIVE PEOPLE ONLY; ignore family/friends who put you down or the IT'S ALL IN YOUR HEAD MENTALITY.
belly laugh daily; in support is lymetoo's LAUGHTER post and i've added daily since she started there so if you need some laughs read there, and bookmark it so you can find it again.
listen to your body and do only what it feels like doing; we are NO longer the people we once were. we can't turn back the clock; so learn to adapt.
if you are a personality A person; lower your standards to B ... what can you learn to LIVE WITH and be satisfied it's not perfect or has some minor errors.
talk about what's bothering you, etc. to your supportive loved ones: spouse, children, best friend, significant other, etc.
make decisions together and go to support groups OR COME HERE FOR 23.7 support.
that's all i can think of off top of my head, and i've had lyme for 39 years!!
IP: Logged |
These are some of the things that help me keep my sanity!!
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Avoid sugar, white flour (gluten if you can) and processed foods.
Read inspiring stories.
Pray alot.
Come here often for support.
Try to do things you really enjoy daily....even just small things.
Try to read as much as your eyes will allow about lyme and coinfections, so you will prepared.
If you can afford any supplements, maybe try sublingual (melts under the tongue) melatonin as you crawl into bed if you have insomnia (but make sure it doesn't interact with any of your meds.
Stretch daily.
Focus on the fact that you have a PLAN to get well, even if you can't see a LLMD yet.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
This is my list I go by, your mileage may vary. I've been housebound and bedbound for the last several years, so I have different priorities/abilities, and can't work, so am better able to avoid stressful situations that one can't avoid when they work.
Avoid/remove:
Avoid/remove- sugar, caffeine, alcohol, dairy, gluten, simple carbs, processed foods, artificial/synthetic food additives (MSG, aspartame, splenda, food dyes, etc.), nightshade vegetables (potatoes, tomatoes, peppers, eggplants, etc. Apparently up to 60% of the population is sensitive to this family of plant foods - they cause a lot of bad GI, Neuro, and inflammation problems for me)
Products/Environmental toxins- laureth and laurel sulfates (and the other names they go by), parabens, chemical cleaners, dyes, really any and all synthetic chemicals, and even be careful around essential oils, they can also harm when not used properly, plastics that off-gas, paints that off-gas....
Social Environment- stressful people (judgemental, skeptical, questioning, needy, using)
stressful environments (you will know what is too much, from too loud/noisy, to too much sensory input or too much demanded of you mentally or physically). TV, for the most part - I can't handle it for very long at all.
Seek:
On my good foods list- organic always (unless something really important I need and cant get any other way), grass-fed, true free-range, local, whenever possible.
leafy greens and cruciferous vegetables (great for anti-inflammation), eggs, apples, colorful fruits and vegetables, eat as many fruits and veggies whole as possible (juicing removes vital fiber, and can easily be very highly caloric and high in sugars),
wild-caught salmon, cod liver oil, some grass-fed lean organic meats, in moderation, small amounts of honey in place of sugar in baking cornbread - made with corn meal and oat flour,
wild rice, oatmeal, brown rice rice cakes, real hominy (made from sun-dried corn we buy in bulk, then boil with wood ash for several hours - it makes corn much much more nutritious, by making more of its proteins available - this is what indigenous people were doing with their corn well before colonization), squash, beans, nuts, berries, organic chicken, almond milk, organic and wild-crafted medicinal herbs to be made into detox and other teas..
Environment:
Social- people who are calm and content, situations that engender that mindframe, contemplative writing and places, words to remind of the worthiness of life no matter your health, people to care about and do for, even if it's a simple note or email or a gentle hug, or a call to wish a happy birthday. Quiet places and people.
Other- Meditation or other form of being quiet and still and thinking beyond your worries, desires, etc., time with nature, even if only able to open the blinds and look at the sky or watch the birds, clouds, and trees.
Hobbies that you can do w/a computer or are able to do with little pain/effort. I started up a genealogy hobby that has given me pleasure and a sense of accomplishment, and has been a source of happiness for my family and friends.
Little puzzles to keep your mind working, like crosswords or sudoku - they have really helped me gauge my cognitive skills when they started to return, and helped me keep it in shape somewhat instead of completely atrophying.
Funny sites and things online, and learning jokes to tell others, even though I have ALWAYS been terrible at remembering them and telling them.
Many more, but I should stop here. I seem to be in ramble mode today. Ok, that's more like every day! hehe
and write important dates on it, and look at it many times a day. Cross off the days so it's easier to know what day today is! This way I am less likely to miss big events.
Get clutter free:
throw extra things away on days you can think clearly.
Buy a massage machine: Hand held quality model!
best thing for myalgias in my back, neck, buttocks and thighs...it is immediate stress relief!
Get an exercise buddy...someone to make you do it!
posted
WOW!!!!!!!!!! these were better than my WILDEST dreams!! i knew you guys were the true experts!!!!!!!!!
this is almost too much to wrap my head around! but what a feeling of hope i have now!
I can control this for now (to a degree) even w/out treatment right now! oh i can't tell you how you all just made me feel---powerful, in control, hopeful...the OPPOSITE that i was feeling a few days ago.
i can i repay you all....you may have saved my life.
i don't know any of you personally, and this may sound silly, but i feel i love you ALL and admire you so!
i am printing this out and it will become my bible for taking care of myself for now. i finally feel in control and this is priceless!!!!!!!!
-------------------- Lisa Posts: 16 | From new jersey | Registered: Mar 2009
| IP: Logged |
betty-it doesn't look like she did the 2nd on by DELETING???
lisa-you have figured out a bunch of things i use regulary
exercise is important but where you are in tx depends what kind of ex you should and shouldn't do
can you skim dr B's guidelines and read the exercise part?
he is continuing to do research on exercise and i think one new thing is it is important to do it only every other day-but i can't trust my memory-so try to find his guidelines and read
listening to your body is real important and as you start tx you will become an expert at that
-------------------- please excuse my typos . my hands are really, really bad now. toooooo much pain to proof. sorry. Posts: 1676 | From new england | Registered: Feb 2004 |
canyon Junior Member Member # 19044 posted 14-03-2009 12:11 AM
Lisamarie,
you mentioned some good points.
I have learned to rest, eat a variety of foods when i feel good. There are certain foods I crave,olives, beets, and nuts so I eat them....
Rely on my llmd for support.
Limit the number of people that I discuss my condition with now.
Excercise is really tough for me. I am back to work and make my self walk up and down 6 flights of stairs, etc.
I make it a point to research, research, and research and pray.
Hope you keep getting better. Posts: 6 | From Oregon | Registered: Feb 2009
**************
lisa, go to your accidental duplicate and delete it please; i copied the replies here already! betty ... thanks.
IP: Logged |
quote:Originally posted by lisamarie: When reading for school I use a bookmark to sort of highlight the line I am working on (as the lines and words all bleed together and my eyes seem to jump around)
I also read for short periods of time and then take a break as it gives me pretty bad headaches (which I have never had in my life).
I then return to my reading after my eyes have rested.
Lisa, My son his the same problem reading text books. His eye doctor suggested using Avery 11901 insertable plastic dividers over the text on the pages. There are 8 different colors to choose from. There are 2 colors that work for my son.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic