I haven't posted anything since October since neither Josey nor I knew what to say. It's been a hard road and we just returned from an appointment with Josey's LLMD in Washington, D.C., where she had a PICC line put in and began IV antibiotics. These will be given at home and will likely be part of our life for at least six months. She'll still take about 40 pills a day and have IV fluids on the days she doesn't get IV antibiotics.
The "Top 10" list is in no particular order and after writing it, it sounds negative to me. I decided to post it anyway since it's reality and things I've heard Josey say. She wrote a long letter last spring, to no one in particular, that included many of these statements.
Other Lyme patients have told me they feel much the same.
10. Quit telling me I look good. I feel terrible so looking good doesn't matter much to me.
9. I know you're tired of me not being better yet. This is a long process and I'm tired of it, too.
8. I'm afraid you're going to forget about my very existence. If you think of me, tell me. Call, text, or send a card or show up.
7. Prayer helps so don't just say you'll do it. Really do it.
6. The world is moving on but I feel like I'm not and worry I'll never be a part of it again. You're getting college acceptance letters and senior pictures and going to prom. I'm feeling cheated and although I really am happy for you, I grieve the loss of those things and wonder if I'll be in this bed forever.
5. You don't want to know how I feel. You want me to say I'm fine when I'm not, so you'll be reassured. If you see me out, don't assume I feel good. I needed out of the house so badly that I risked my health to do it. I'll pay for the excursion for the next three days with pain, extreme fatigue, and other symptoms.
4. I forgot that conversation we had yesterday. I wonder if you're messing with me and we really never talked. Don't be offended; be honest and patient with me.
3. Some days are better than others but I can't predict which days or even how I'll feel from one hour to the next. I'm not trying to avoid you when I have to cancel plans.
2. When you complain about things in your life, I'll just smile and agree with you . You won't know that later I'll cry because I remember when those were my biggest worries, and hope someday they will be again. Still tell me, though, because I need to feel connected to you.
1. Laugh with me. I need that as much as anything else.
5 Comments
Shay Kavuncu
12/19/2014 10:30:30 am
Yes some may see these as negatives. But this is the true feelings of someone young with chronic illness. It is hard when you feel left behind. I can truly relate in many ways. I know it is hard but try to look for the positives. It does help.
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Dawn Wilburn
12/19/2014 11:19:00 pm
These are also 10 things someone with MS want to say but try not to say due to already running so many off. Also if I do say it I WANT IT TO TRULY BE HEARD even if you don't understand....please try and respond with a positive comment even if you have to act like you understand and make something up! I just want to be heard for reassurance and I'm not ......they just leave because they don't want to hear and don't understand or dont know what to say. Took me many many years to realize and still struggle with this. God weeds out who he wants to be in your life and who needs to be in your life and if they leave and don't listen they probably weren't a true friend anyway.
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Regina
1/4/2015 08:06:57 am
Thanks! Very well said.
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Whitney
3/2/2015 04:34:15 am
So true! If only there were some way to get these things across to our friends and family without the negative associations. It can be such a lonely illness when our loved ones don't get it, but it's so uplifting when someone truly gets it!
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Julie Parker
3/23/2015 10:24:51 am
Amen, Whitney. Thank you for commenting! I meant to respond to you long before now. We in the Lyme world do need to stick together and build each other up, so when those we think should don't do it, we have each other!
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