tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I am still in waiting mode from Igenex and yes I have a LLMD. But I've gone five years undiagnosed with every specialist referred to me and some, many times over.
Obviously your family knows you are ill and my sister knows I'm waiting on lyme tests, but something happened that I don't even understand.
She was trying to tell me how to get a credit card off to a local company so a friend could pick up an order for me. She said, call this number....
then ask for this department, then ask for this guy and ask him to connect you to some extension and then you will have choices...when I said Whoa!
I said I can't comprehend all this. Her comment. You use to be so good at this. I know people with lyme and they don't have their brains malfunction....
Then she went on to tell me I needed an ER and my husband shouldn't leave me alone if I have trouble with simple instructions.
I tried so hard to explain that I've been to the ER more times than I can count, I'm in waiting mode for my lab results and she just plain doesn't understand.
How can you help family and friends understand that lyme is a wee bit more than just a bug bite. I've tried sending web pages, but I doubt they even click on the links with what I've had come back at me.
Suggestions in SIMPLE terms that others can understand just incase I test positive? If not, I think I've exhausted every doctor posibility and it's to the funny farm I must go.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
(does that make sense only to me, because it just popped out of knowhere!)
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
| IP: Logged |
I didn't want to leave you thinking that "they" will never understand... in time, some will come around.
for me, i have just found it exhausting and depressing trying to make others relate, when i could be concentrating on healing.
...I feel much better in a day when i focus on how i WANT to feel,
rather than WHAT i am actually feeling...
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
| IP: Logged |
bettyg
Unregistered
posted
Cathy, I feel for you; my 3 brothers will still not admit anything NOR give me any moral support after 36 years; 2 of which I/they found out I have chronic lyme and in treatment.
Go to treepatrol's newbie links/medical; you canfind it on the newbie's links/advise I sent you too.
Look for THE SPOON THEORY, and BUT YOU LOOK OK articles. There are other threads there discussing this in detail ok. best wishes.
Otherwise, avoid the NON-supportive family members in order for you to get better and NOT have them dragging you down. Bettyg
IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Cathy-
I've come to conclude only someone else who has experienced/is experiencing the neurological symptoms of lyme (well, LLMD's too!) can genuinely understand what you're feeling and going through.
I think that's just the way it is. What counts with family and friends is that they CARE about what you're going through, even if they can't understand it, and that they are supportive of you and listen.
I avoid anyone who can't be supportive. It just feels too sh@@##y. to be around them. And if I can't avoid them, I make sure that lyme doesn't come up, and if they are clueless and persist in asking me how I am I say FINE.
The suggestions Betty gave you I think are great to give to those who really want to TRY to understand. I hope that describes your sister and husband too.
You don't need a funny farm, you just need appropriate treatment for a serious medical condition.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
posted
My family was frustrated with me for years before my diagnosis because I was just "sick" all the time and no one knew why.
When I found out why (Lyme), my wife avoided hearing the diagnosis for months.
People have defenses against people being sick, and really sick.
If people really want to know about Lyme now, I have them watch the trailer to Under Our Skin.
Some of my family have watched it and then never said a word. It think they "got" it. They are a lot more tolerant.
Many people are so surprised to hear how serious and chronic Lyme can be. When they express surprise, I express mild surprise at them and will kindly say something like, "Oh yes, people die from this disease. It can cause long lasting, severe pain and neuro issues."
Sometimes people ask me how it feels. I say: 1. Like you haven't slept for a day or two. 2. You have a bad case of the flu and it never stops. 3. Like you have run a marathon and all your muscles ache and it is hard to walk you feel so sore.
I look for examples they can relate to experientially.
In the end, we are sick, they aren't, so I have given up trying to get them to understand. It is good enough to be on this board, which has helped me understand and accept this illness myself.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Cathy-
Sorry that you have to join us here. Loss of IQ points is common, but it does get better with treatment.
It became easier to just not talk to family. You will probably get more sympathy here. You seem to have a good handle on your limitations and will develope coping methods. Having the ones living with you on your side is the best. They will be scared that you won't get well. I reassured everyone that I would, even when i wasn't sure myself. It was helpful for my children to know i would be well.
Now several years later, I am well. It is a long, frustating road, because to care you need if often hard to get.
posted
I had a co-worker ( who I thought believed me) one day ask how I was. I replied, my brain is real numb and she snapped back, "what doctor will understand that". I said a Lyme literate Dr. The rest of the day I stewed over this and came up with these descriptions that I thought people might understand. 1) Stay up 48 hours straight 2) get shot of novacaine into brain, hand and foot 3) tape pennies to your eyelids 4) Wear coke bottle thick glasses belonging to someone else. 5) Stab knife into back of neck at base of skull 6) throw leaded x-ray blanket over you 7) take hit of LSD 8) walk up 100 flght of stairs 9) put in earplugs 10) hang upside down so you feel like your head will explode 11) Get shot of adrenalin to heart, add in a few electrodes to shock you once in a while. 12) have someone stand behind you, kick you in the calves as hard as they can 13) place vice grips on temples, tighten 14) walk outside in 90 degree weather, add another lead blanket. 15) Walk onto swaying boat and spin around twenty times. And the most important step of all Have a close friend say "you look good, you must be feeling better ".
Thanks for letting me get that off my chest. Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Dear Pure, You were able to take my bad situation and make me laugh my head off. They have always said that laughter is a great medicine.
Yes, the part that made it so funny is that I could relate to all those things you said so I'm sure I felt it funny where as if I really told my sister this, she would probably just get madder at me.
But with this said....seriously, that was a great contribution and something I probably needed.
When you aren't feeling well, I think we find our skin isn't very tough at all and we can get distressed over things that may not have bothered us before.
For you to take this and capture it in this manner gave me a laugh I desperately needed. I know lyme isn't funny but your analogy was. Thanks so much for posting.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
I guess it is kinda funny looking back on it. Of course it was created in an angry state of mind but now I'm laughing about it too. So thanks for making me laugh! Sara
Posts: 81 | From Nashville Tennessee | Registered: Oct 2006
| IP: Logged |
I just might save your post to show someone who doesn't understand Lyme!! It was very funny!
I would add that after one does all of those things to their body to try to perform my daily tasks such as...
brush teeth shower get dressed (while still wearing the lead blanket!) then, if you get that far, try something a little harder but you'll probably be ready to go back to bed!
I'm doing much better now, but I never thought that squeezing the toothpaste would bring tears to my eyes. The morning routine used to wipe me out before treatment!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| 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!
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic