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» LymeNet Flash » Questions and Discussion » General Support » how to end isolation when you can't do anything ever

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Author Topic: how to end isolation when you can't do anything ever
BartHeart
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Okay this is a serious question. I'm so so isolated, but really, my level of disability at this point demands it. I can barely ever be around people, can't talk on the phone, am chemically sensitive, can't really go anywhere.

On some level, I have just given in to it. But isolation has really overtaken my life, and for others who are homebound but *wish* they could be social (mostly), how do you even connect to people any more? Through what channels?

And what do you do to cut through the isolation when family and friends have just left your life because they can't deal with how sick you are?

I think even if I had more text buddies it would help. I mainly just want to hear from those who have dug themselves out of pretty deep isolation, and how you did it.

(breaking up a paragraph for easier reading for many here)

[ 03-08-2017, 01:34 AM: Message edited by: Robin123 ]

Posts: 30 | From Massachusetts | Registered: Jan 2017  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Check in with this guy!!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36935

As for being chemically sensitive.. Be sure to look into Mast Cell Activation Syndrome.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36299

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95968 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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So sorry you are going through this. Please take one day at a time and hang on!!!

Lymetoo gave you a link for one poster on Lymenet ("Check in with this guy!!"):

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36935

Here is one for another poster you might want to also "check in" with:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036934;p=0#000000

Contact the online MA Lyme groups:
https://groups.yahoo.com/neo/groups/MassachusettsLyme/info

Some more MA Support Groups info:
http://whatislyme.com/lyme-and-massachusetts/

http://www.lymenet.org/SupportGroups/UnitedStates/Massachusetts/

For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or find a station near you from this list:

Massachusetts Frequency

Lawrence 99.9

New Bedford (WTKL) 91.1

Winchendon (WKMY) 91.1

Your life most certainly matters. After all, you are "fearfully and wonderfully made."

Prayers and blessings to/for you on your healing journey.

Posts: 8927 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
randibear
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frankly, I just don't want to. too much effort. I know its not good for me but I don't need to be preached at, told I'm a hypochondriac, it's all my fault, yada yada yada.

sorry to be a downer. I'd rather be alone.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
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I understand that randi but I think it would be a bigger problem for me if I couldn't go online

I have a sm group of special ppl online I have gone thru a lot with

Minimal help from family.. One son the oldest is very responsible and checks in weekly and doesn't make a point of judging me but I know he doesn't understand it all

I am MCS and a few months ago it got way worse and I found out about mast cell. Studying about that helped my MCS a lot

A yr or so before that I realized mold was a bigger issue for me than I knew. I joined some support groups on facebook and ended up with many new friends ..real friends not fb friends ...some became phone friends. Some text buddies.

All of it got me thru to where I am now. I have a clear history of Lyme and it has permanently affected my life but I don't feel Lyme is my biggest problem now

Reach out...there are lots of MCS groups online. Be sure to study nasty cell. Good luck

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Robin123
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Are you ok with chatting online? If so, there are people here on Lymenet who I bet you could start private messaging with.

Also there are lots of Lyme facebook groups where you can start message chatting in real time like a real conversation - just means finding those who are online at the same time - that's lots of people, actually.

Chatting in real time can help break through isolation to be chatting with others who understand exactly what you're going through! You can private message me about it if you want to inquire further.

Posts: 13084 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Judie
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Gosh, I've been there.

What is making it hard to socialize the most? Is it fatigue, MCS, lack of available people?

I have a friend texting me once a day to check in. She remembers most days. It's hard when she forgets. It helps me remember someone cares about my well being and I won't die without someone noticing.

I had people come by from a church and help when I lived in a less isolated area.

I good doctor said I had to start walking to get better.

I had to PUSH myself to start taking a walk. Even just a 1/2 block a day.

The body spirals with zero activity and it becomes a never-ending loop.

With my current, crappy situation, I have to drive to see people or pay to get them to visit to help. It sucks.

I just had to end the isolation someway. I have one friend coming over to visit once a week now which is helping. It took 2 years to find someone.

I'm trying to move to a less isolated situation now. That's my solution to this mess.

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lpkayak
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Funny I forgot my main social activity. I live half hour from beach and have a small dog. We both love the beach. Even if all I can do is park and take a few steps to sit on bumper I can breathe the air get ionized and let dog explore on her long leash.

Almost always ppl walking their dogs stop to visit.. I pretend my disability is only physical and don't get into all the other stuff

I just focus on how wonderful it is to get out and I have had some really nice conversations...

I miss church. The building got moldy. I often didn't get there Sunday morning...mornings are the hardest for me. But 10-15 yrs ago I really enjoyed being with ppl 10-20 yrs older than me. There were lots of groups...some formal with a book to discuss...some crafts...but I usually couldn't do the craft but I could stay for the cinversation. Groups about one thing helped me grow in very different ways

I didn't stand out. All had aches and pains and bad memory. But for our time together we ignored that stuff and talked about lots of other things

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
BartHeart
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Thanks for the kind words and thoughts everyone.
Robin, do you have ideas of good places to go for live chat online (w/ other Lyme folks?). That is actually one thing I can do but haven't found a good venue but think it would help.

Randi, I can see what you're saying -- some days I'm truly at that point too, of just not wanting to engage b/c of the stupidness I might run into.

I will def. look into some of the other things . .

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Sick4ever
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Hello everyone. I am new today to this forum. I have had a flare up now for 3 days and am stuck again on the couch. I have many herniated discs in my mid spine from Lyme and it is throbbing in my mid back with pain radiating to my ribs on the right. In addition one minute it is hurting in my elbows then ten minutes later my wrist or neck. I used to ski, hike, ride a motorcycle. I am lucky if I can carry up a basket of laundry for my wife now. I am getting worse as I get older now. No quality life anymore. Ringing in ears is so loud I can hardly hear the tv. Can't afford Lyme MD's anymore since majority don't take Medicare. Sure feels like Lyme is still alive in me but my MD does not agree. I don't know what to do, where to go and since symptoms are getting worse every year I am starting to give up. I wish I knew if that new blood culture test is accurate. I will scrape up my last bit of savings to have it done if I knew it was an accurate test. Be well everyone.

--------------------
Steroid Lyme Disaster

Posts: 6 | From New York | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Sick4ever - Welcome to Lymenet!

I'm so sorry you are going through this. You certainly aren't alone.

I suggest you write a new post in "Medical Questions". People will gladly give you more advice as to what to do.

Contact the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help. They would know better about NY.

Some more resources for you (including Support Groups info):
http://www.nyclymesupport.org/
*[Note: they are very educated on the various local doctors so they can help you to figure out the best doctor for your situation, and alternative if that doctor is very booked up. Also, they are very knowledgeable about treatment, etc., not to mention supportive of you going through the process!!]

http://whatislyme.com/websites-and-support-groups-by-state/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Here is a link found on Lymenet for "Financial Help and Other Information":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%.
View on www.lymetap.com

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you

Btw - I know you are new to Lymenet, but you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=011844;p=0

To remove your name from the signature line, click on "Edit Profile" under Lymenet Flash in the top middle section of the Lymenet page.

Click on "Edit Profile" on the left-hand side, scroll down to "Profile Fields" then down to "Signature". Make your changes, then click "Update Profile".

Also, please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8927 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
map1131
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I literally MADE myself socialize with my husband. Even though I felt like death I would attend family gatherings(not for long), attended BB and FB games with him.

Did I miss sometimes? Yes! I would pay dearly for doing these social events for days afterwards. But I felt that I needed to force myself to do as much as I could.

I felt there were benefits from just being as much as I could apart of life. In my former life I was a very very social person.

I just didn't want to loose everything I used to love doing. That was the fighter in me saying I'll be damned if this illness will take my everything.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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Welcome, Sick4ever!

About that test, if you have chronic lyme there is not point in testing again. It will always show positive.

Also .. the ringing in the ears can be from eating foods high in histamine .. or from Mast Cell Activation Syndrome, which many Lyme patients have.

I also get ringing in the ears from foods high in salicylates and oxalates.

So .. check those things out!!

[hi]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95968 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
k84
LymeNet Contributor
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quote:
Originally posted by Lymetoo:
Check in with this guy!!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36935

I am "that guy" in the link above.

Still, months later I struggle with finding socialization. In an odd way, I think Facebook has removed people's willingness to have a normal interaction, via text, email, or phone. You know, swipe, swipe, like, look at pictures of people doing awesome stuff. I don't care to participate throwing all my personal life up on a 'wall' for everybody to 'like'.

I've had Lyme for 13+ years now. Before the masses migrated to Facebook, Yahoo Messenger was a social lifesaver; gave me a scence of connection and chatting, and people did not seem so vapid like they are now on facebook. Now everybody has gone to texting, problem is I have nobody to text...

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dannyboy
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Hey folks!

If anyone fancies chatting in real time, a user from /r/lyme set up a Discord channel for lyme and other chronic illnesses. I've personally found it great to break up the monotony and isolation of everyday life. We'd love to have more active users! Check out the invite in my signature :3

--------------------
Check us out at the Lyme Disease and Chronic Illness Discord channel!

Posts: 3 | From Illinois | Registered: Aug 2017  |  IP: Logged | Report this post to a Moderator
   

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