Before getting lyme symptoms and all this hellishness started I used to be outdoor active. I was looking forward to my kayak friends exploring new creeks etc this year.
Last evening I had a call from one of them who is trying to get us all together Sat. morning.
I hated to sound whiny but I said I really wasn't to be in the hot sun while taking doxy.
Also I said I would see how I felt in the morning because I am now on a stronger antibiotic etc etc. (meaning I am now herxing) and haven't been feeling well.
I didn't bother telling her that I am dizzy, ear aches, swollen glands, thigh muscles weak etc. I might just try to go anyway.
She said "well put it on your calendar and think about it!" 'then let us know"
GEESH!!!! I guess people really do not understand and I doubt they will. It is complicated to say the least.
It makes me wonder just how long I will have those friends. Something else to be depressed about.
Posted by Lexalou (Member # 32663) on :
PSS Put it on my calendar! haha the only thing on my calendar is doctors appts and lab tests!!
Posted by payne (Member # 26248) on :
at least you remembered where your calendar is. Posted by just don (Member # 1129) on :
I got the worst sunburn of my life in middle of the winter being outside an hour or less per day on doxy.
I would have to live in a darkened cave and never leave to use it.
Dont even THINK about going!!!!!
Posted by melindacf (Member # 5412) on :
It's sad when you realize just how little your "well" friends will understand what you go through. It's like many of them don't know what to say or do, so they ignore you. They can't be bothered with your stuff anymore, or something to that effect. You will find out who your true friends are, and they won't be many. At least that was my experience. Cling onto the relationships that you can and don't let those who can't deal get you down. That's about all I can offer.
Posted by wendihk (Member # 20554) on :
If they are truly your friends they will understand and if not you are better off without them.
Don't be afraid to be "whiny" otherwise they will just think you are making excuses. Most people are uneducated and you can start to paint them a picture with small brushstrokes.
It was easy for me because my friends watched me drop down to a size 0 and my face was sunken in when I used to be a healthy athlete.
Unfortunately people have a hard time recognizing a disease that can be invisible to others. I had physical signs which they knew were not normal.
Explain what is going on to them and if they are truly your friends they will try to include you and help with your extra needs. I am somewhat better and still have to remind my boyfriend that I have it because he expects me to keep up with him and do what he does.
Speak up loud and clear!
Posted by Lexalou (Member # 32663) on :
good points, thank you. I guess I was a little wishy washy on not going but now I just explained to them why I will not be kayaking etc and a little of what I am going thru.
I also told them that I must focus all my energies on getting rid of this or at least better. Yes so far they are supportive, empathetic and praying for me.
Today was an exceptional painful day so I am GLAD I have no plans for tomorrow. I don't know if I am herxing or not but my head and eyeballs hurt more than I could ever have imagined. Still does somewhat.
I had a call earlier from another friend just to ask how I am and to let me know she was thinking of me. It meant alot.
I am definitely staying out of the sun while on doxy after hearing this.
Posted by Dogsandcats (Member # 28544) on :
I think I posted this before.....had a friend call. Had not heard from her in a year. She felt so bad hearing what I am going through, she even watched Under Our Skin.....
Called me a couple of weeks later and asked me to watch her son at the beach for 3 days.
Yep, just roll me out on the freeway, I would last longer there.
Posted by HopesAlive (Member # 29774) on :
I am so pleased to hear that your friends are understanding and being supportive. Aren't those phone calls so sweet?
Just so nice to know that someone is thinking of you. I wish friends would realize that, sometimes, that is truly all we need to hear.
How easy it is to drop a note through email or pick up the phone and let someone who is hurting that they care about them and are still their friend.
I had one friend who told me straight out that she could not be friends with me, because I could not attend so many social events. I was not hurt at all, because this was not a close friend...we had just recently reconnected after many years.
I felt more sorry for her than I did for myself. Even when healthy, because I am so involved with my family and have a tendency to be a homebody, I would not have been able to keep up with this woman's social calendar, lol.
Posted by JeniferM (Member # 31996) on :
Dogsandcats... you mentioned that she "Called me a couple of weeks later and asked me to watch her son at the beach for 3 days"
Unfortunately, I've done stuff like that myself. Here's an example: my daughter's school has a strict nut/peanut policy at the school. It's basically no nuts on the premises. Over the years, they always talk about peanuts and peanut butter. So, what did I do one day? I sent a small baggie of almonds to school with my daughter. Oops! Duh! Got my hand slapped pretty good for that one. heh
I figure, if it's something not even I will remember, I can't blame them if they don't. Although, I might have a greater excuse what with my swiss cheese of a memory, but I try to let it go and just keep repeating myself to others. Still frustrating, though, huh?
On a side note, I can't even imagine asking someone to watch my child at the beach for 3 days. Wow.
Posted by Dogsandcats (Member # 28544) on :
With Lyme brain, I have no doubt that I have said, done, repeated, and thought dumb things. I could do this without Lyme.
I know she was desperate and needed help. It was just so surreal to have this long conversation (after a year) AND she watched UOS.....to ask me that. Just getting there, I would have passed out on the beach frying myself in the sun with first degree burns with little Frankie running amok up and down the beach crying for someone to help.
Funny thing is she is a pretty protective mother, I think if she really knew my limitations she would be mortified to think she asked! No harm no foul.....I just thought it was a good lymie story.
Posted by melindacf (Member # 5412) on :
Yeah, I have a good friend who has watched UOS, and has stuck by me through this whole ordeal, still does. She has some health issues of her own, but still works a full time job, actually my old position, but anyway..The day we were leaving to go to PA from TX, I was at the grocery store getting a couple of RX's with my daughter and she texted us wanting me to pick up some things for her, bring them by her house before we left..WTH?? I did it, but was thinking..what is she thinking?? I have to get on the road! I have a 3 hour drive to get to the airport, where we are spending the night for flight the next day (2 planes) I realize she has issues too, and after I stopped to think about it, I dismissed my aggravation and brought her stuff to her happily..
People, us included, get so focused on our own issues that we forget, and others forget, how much someone else has to deal with. Everyone is human and gets self-focused at some point.
I am just very grateful to have a friend who still calls, cares, and wants to be a part of my life. Most, well all, of my other friends are distant and pretty much just wrote me off.
Posted by lou (Member # 81) on :
Well, another way to look at this is that your friends still think about you and want your company. This is a good thing. Maybe when you feel better, you will be able to accept those invitations.
![[spinning smile]](graemlins/spinsmile.gif)