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How can I be a good friend while suffering with Chronic Lyme?

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Posted 2/1/2014 3:22 AM (GMT 0)
I am 29 and was diagnosed with Lyme the end of 2011. I have been sick since 9 years old. I had lot's of friends from school and work but none of them could understand why I was sick all the time. I was starting to cancel everything and my depression kept getting worse. I am not reliable because the bad days still out-number the not so bad days. I take about 30 different meds and supplements, in addition to 4 days a week infusions of 400mg Doxycycline and 500mg Flagyl through a port in my chest. I am seeing a new therapist now but I still have no clue how to bring people into my life who can deal with the fact that I am in pain all the time, unreliable, side effects from meds, and likes to stay home. I live in Los Angeles and would love to chat about what we are going through!
Posted 2/1/2014 4:07 AM (GMT 0)
Being chronically ill is a real life change! I was sick with Systemic Lupus for 15 years and missed out on so many family events and never could say that I would be somewhere definitely. My illness is in remission now but I have something else now and I am seeing a Neurologist & LLMD for a diagnosis. So I am back to being sick but with something new.

I got very depressed at times and started seeing a Psychiatrist and take an Anti-depressant and also an Anxiety med-which helps a lot. Also I go to church when I can and get on their prayer list--God does answer, not always my way though! And I write notes to friends & relatives or send emails just to see how they are doing! And I used to go to a Monthly Support Group for Lupus.

So it is hard, but reach out when you are really down. And those times when you feel better, do things that feel good. A good book from the Library, a talk with your neighbor, or just sit outside in the sunshine for a half hour--with your heavy coat on of course!
Posted 2/1/2014 4:15 AM (GMT 0)
Thanks for the suggestions.
Posted 2/1/2014 6:43 AM (GMT 0)
Hi GotMoxie. Welcome to the forum!! I'm sorry you've been through so much of your life. It's not easy. My daughter is 26 and has been ill since she was young and just got diagnosed about 3 years ago. She spends a lot of time online to take her mind off things, playing games, reading stories and is always seeking things that make her laugh, etc. She has learned a lot and always has something interesting to talk about. On the rare occasion she doesn't have a headache, she likes to do something active. I don't recommend anyone should be on the computer a lot, but it does help her. She's our private computer tech. too and helps out when needed.

Just know that you're not alone with this and that there are some great people here, ready to give you support or answer questions. Have you checked to see if there's a support group in your area? That could be helpful for you and you might gain some new friends who know exactly what you're going through and would be willing to visit you.

I wish you the best with healing. It takes time since you've been ill so long, so patience it needed. Are you detoxing at all? That will help you feel better. If you read through the "New to Lyme..." thread at the top of the page, you will find ways to detox.

Keep coming here so we know how you're doing. We care.
Posted 2/1/2014 7:08 AM (GMT 0)
I am glad I stumbled upon this group. We need more places like this to find others with chronic illness. I need more people in my life who already understands the daily fight to get rid of the pain. Thank you for the feedback!
Posted 2/2/2014 6:19 AM (GMT 0)
Its very difficult to have a normal social life when your sick with lyme. Being as young as you are makes it all the more sad. Are there any lyme support groups in LA That would be a good thing to try and find Joining online lyme groups is also good and there are quite a few of them now.
Posted 2/2/2014 5:28 PM (GMT 0)
Hey GotMoxie! I can totally relate to how you feel about not being reliable and struggling with keeping friends. Prior to Feb 2013 I was an extremely active person always doing things, running 3 miles on my 1 hour lunch break, going out dancing with friends on the weekends out until 2 am just living life and now I'm a homebody at the age of 29. I will make plans and have every intention of doing something but then how I feel will end up ruining it. My friends don't understand at all. I've tried to explain to them but they seem to live in another world of invincibility (is that a word) me, me, me & how in one moment I can feel decent then the next it's like doom and dizzy in a second. In a way it's sad that we have to go through these things alone but the real TRUE friends (and family) will stick with ya even if just through a text message a few times a week. For me, I'm initiating a lot of the conversation which is hurtful but just because I'm not feeling well doesn't mean I don't care about them and how they are doing. I just keep in contact and let them know I miss them and hope to be well in time.

That's great that you are going to see a therapist, I hope they are able to help you talk through some things and know that you are worthy of friendship even though you have some physical set backs. Maybe you will be able to find others nearby in support groups. I know it can be hard but this board has been a great place of refuge when you need someone who understands. We're here for you!
Posted 2/2/2014 5:38 PM (GMT 0)
I understand. I am so sorry, it's so so hard and I'm in a so solar spot. I just received a text a few minutes ago from a friend asking me to have coffee. Well I can't drink coffee because my cardiac issues are so out of control. My mom had to call 911 for me the other day, I almost passed out turned white etc.... My heart is going haywire. I also feel ill at age 9 and I'm
In my thirties. I was only diagnosed last winter though and I was newly post partum so my treatment options were limited bc I was breast feeding. I feel so alone and hopeless. I'm sorry you are having it so rough. I can relate though. I pray it gets better. For me I know I need to get to back to church.
Posted 2/3/2014 4:55 AM (GMT 0)
Maine76, you are an incredible woman to be able to take care of 6 children and battle illness. You should do something special for yourself. It sounds like you deserve it. If you can get through today, you will get through tomorrow. Your in my prayers.
Posted 2/3/2014 5:10 AM (GMT 0)
gingeranne8, thanks for understanding what I am going through when it comes to making friends while having a chronic illness like Lyme. My old friends didn't get it either. I am still trying to find a support group in Los Angeles for a 29 year old female with Lyme. Fingers crossed and thanks for the support.
Posted 2/3/2014 8:54 AM (GMT 0)
Hi GotMoxie,

Please don't say that you are not reliable. You are pulling yourself down like that. This situation is beyond your will. I tend to say that my so called friends are unreliable devil :-)

It is very frustrating to loose friends because of being ill. I went through it when I was sick with cancer at 16, and am again going through it with these Lyme and Bartonella infections.

Just this weekend, something dawned to me. There is this couple a few houses away from ours. We get along rather well. The woman is pregnant now and she's avoiding me, like almost running away from me when she sees me. It might be the instinctive reaction of a pregnant woman wanting to protect her unborn child, but it hurts.

Most of the time, I focuss on me now. On treatment and on resting. Getting angry with friends that ignore you is so energy consuming. Real friends will stand by you. I've read that your family is really there for you to.

Sometimes I still get really angry, but most of the time I focuss on me. I pamper myself instead of thinking about the unreliable people around me.

I personally think it is very sweet of you to want to be a good friend, but I think that at some times it is just impossible to please others when you don't have the energy to do so.

For friends that show interest: I send them a message every now and then and I try to pick up the phone when I'm up to it. They understand it when a conversation is not possible.

As for the others, it'll be their loss.

I'm in Europe, a support group is almost an oddity over here... I hope you will find one not too far from where you live!

And there is also the forum, a great group of people whenever you feel the need to vent. You'll get lots of support over here, it's been a life saver for me :-)

MarieLS

 

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