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totally unprepared for life... incredibly sad.

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Old 08-01-2006, 09:59 PM   #1
Join Date: Feb 2006
Location: CO
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lymiesarah HB User
totally unprepared for life... incredibly sad.

Lately I have been feeling well enough to get around with a cane instead of the crutches I have been using for years... I still need a wheelchair for going large distances. Overall this is a good thing... my husband has been going out regularly and playing in a band, basically all the things that he stopped doing because I was sick and he felt guilty doing it... I know that these are all normal things.. but I am just totally unprepared mentally for what a "normal" life entails. I feel lonely and I want so much to be a normal person who is totally OK with the things that other couples are doing... like wanting time apart from each other and all that... I know it should be normal for him to want time apart from me, but i feel so depressed about it all.

I have been sick for so long that i have no idea what it is like to live a normal life, have a normal job, be in a normal relationship... lyme has infected everything around me...relationships, routines.. i am terrified of the future because i don't know how to handle anything tha most people consider to be normal. i feel so scared and so lonely. i wish i could just be normal.

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Old 08-02-2006, 05:57 AM   #2
Join Date: Jun 2006
Location: Bloomfield, MI USA
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srocc20655 HB User
Re: totally unprepared for life... incredibly sad.

My heart goes out to you. It sounds like you are making strides in getting your health back. I know it is hard to be upbeat and get back to normal after being sick so long. Perhaps you could talk to a psychologist for some counseling. I think that would be a great step in helping you get back to living normally again. The sun will shine again for you.

I wish you the best and include you in my daily prayers.


Old 08-02-2006, 06:09 AM   #3
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Re: totally unprepared for life... incredibly sad.

Oh Sara how many of us feel your heart feels for you....I know for myself I am having to learn to be around people again...very, very hard to do when they (humans) are the ones that turned their backs on me...but hmmm....maybe alot of it was me pushing them away... I am trying to catch up on things that I gathered for 20 years...crafts, organizing I still walk around in is all little baby steps ....

Sara I don't really think there is a so called Normal....every human in this world has issues...I am sure EVEN "Dr. Phil" has issues

The good news is your Miracle is your are using a cane now instead of crutches...YIPPIE!!!!!! that is such wonderful news....

And I feel you are lucky for the fact you have someone that LOVES Music and plays it!!!! When I lived by myself for a couple of years...locked up and down in bed .....I dragged myself to a little bar...(I don;t drink) every Sunday listen to MUSIC...To be able to dance...and boy that is what my Soul needed to keep me sane...hahaha......Do you try at all to go to band be able to get out for a little while...(unless they pull all nighters)

You are use to hubby being around you ...and most likely being the only person you feel comfortable with...the time that he goes and has some time for himself....try to make that YOUR special time .....Weather it is bubble bath time or writing to us or getting that extra time for sleep......

For right now try not to worry what other people are doing...they are not in your position....I have to remind myself of this alot also...they haven't been through what I have...but also remember that they also have their own life problems...for now be rejoiceful for just using a cane...for allll of those little every day new experiences...keep posting and letting out your fears...venting is sooo good...

I know none of this helped ...but just know you are not alone in having to learn all over again on how to be a person...You can do it...KEEP FIGHTING...

it will get better...REALLY!!
Find something to Smile and Laugh is so good for us.....

Old 08-02-2006, 06:57 AM   #4
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Re: totally unprepared for life... incredibly sad.

Hi sara. Big hug to you!!

I understand the fears that go with living with a long term illness. Your point of reference has changed and now "normal" centers around Lyme.

It stinks. I know it does. My kids are spending a week up at their dads house. They went to an amusement park and a lake and shopping and a cookout and a play and a brithday party - all normal things that I can't do with them.

I am so happy that they are having fun although it makes me sad that I can't be the one sharing those good times with them.

In August they are going to spend a week with my sister and brothers at her her in Charleston. I am really jealous about that.

I could go if I want, but I went last year and it was so tough for me - I was exhausted most of the time and I slept a lot. I could not go to the beach and sightseeing with them. I stayed in the house (out of the sun because of the Doxy) and shuffled around. I can't walk very well.

So this year I am staying home. I miss my sister and I would love to see her, but its too much of a trip for this Lymie to handle and I don't want to be down there when I am too sick to enjoy myself.

Anyway, thats enough about me. I didn't even realize I went off on a tangent.

There are things I do with my kids to keep our relationships close. Maybe there is some activity or 'thing' that you can do with your husband that no one else can do?

Maybe you can have a weekly dinner date where you get a nice dinner delivered and send the kids to a sitter? If you get seafood you can make it a Luau theme and wear lei's and play calpso music and put umbrellas in your drinks.

Maybe you can spend one hour or two a week working on a puzzle or learning how to play poker. Maybe you can start an indoor garden together or play a board game. Maybe make a date to be together, send him an invitation - maybe lipstick invitaion on the bathroom mirror - for a weekly bubble bath (candles, music) together where you massage his scalp or something romantic?

Silly, I know, but it will keep you two connected.

Try to remember that he loves you and try not to be afraid. You will feel better someday!

Peace and health to you both.

Last edited by 6Blues; 08-02-2006 at 07:01 AM.

Old 08-02-2006, 09:04 AM   #5
Join Date: Aug 2005
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lymegirl HB User
Re: totally unprepared for life... incredibly sad.


My heart goes out to you and I understand because I have been there too. I try not to think about it but my mind goes to "I just want to be normal" all the time. I try to think about something else at those times but it is a constant battle.

Sounds silly but I want to get a pedicure and wear flip flops again (I would trip and hurt myself if I took one step in these now), I want to be able to go to the store without leaning on the cart like my life depended on it, I want to be able to take a walk, I want to go to the beach, and the list goes on.........

This disease is not only physical but takes a toll mentally too.

Sometimes my anxiety is so high when I have to go somewhere, worried about all kinds of things. I have 2 grade school age kids and even though my husband is a big help in doing all the things I used to do myself like teacher conferences, back to school night, chorus concerts, etc, there are still times when I have to shuffle into school to talk to a teacher or get a kid to a party or any one of the many places they have to go. I feel like I dissappoint them all the time even though I do get to the most important things. They were used to having me do everything.

I like to borrow the mantra from another group "One Day at a Time". I have to continually remind myself of this as it makes everything manageable. When I start thinking will I be dancing at my kid's weddings? or where am I going to be healthwise a year from now? I get sad and overwhelmed. I try to pull myself back from those thoughts and change them to today I will eat right, exercise and do my best at my recovery.

We are all a work in progress (I mean everyone), and we just have to work harder. I so wish it was easier but it's not for us.

You can do it Sara and you have found a support group that will stick with you. Focus on the positive. It is encouraging that you are walking with a cane now. Keep up the good progress. We are here for you. You can always post all, ups and downs. Lots of people here can relate.



My kids are going to my mothers next week. I totally know how you feel, as I want them to have fun but I am sad I'm not the one they are having fun with.

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