living alone with lyme

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arlb
New Member


Date Joined Apr 2016
Total Posts : 5
   Posted 4/6/2016 5:05 PM (GMT -6)   
i'm wondering if anyone out there is living alone while in treatment. i live alone, and while i have wonderful friends who help when they can, I do not have anyone to be an easy or default caretaker. i would love to know how others have managed this.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 4/6/2016 5:08 PM (GMT -6)   
Hi arib, welcome to our community!

I do not live alone, but I wanted to welcome you since this is your first time here.

I'm sure there will be several members along who are also doing it alone.

I can only imagine how difficult it must be...as it's hard enough with the support of my husband.

Because you are new here, it would be helpful for you to take a look at the "New to Lyme?..Start Here!" thread at the top of the page.
It's got a lot of great information in there.

I hope you stick around for support...please ask any questions that you have. That's what we're here for.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

CD3764
Forum Moderator


Date Joined Sep 2014
Total Posts : 4510
   Posted 4/6/2016 5:16 PM (GMT -6)   
Welcome alrb!

Sorry for the reason you're here but glad you found us.

I hope your living space isn't overly huge and is something you can manage without feeling upset when you let dust accumulate, etc.

Lists, lists and more lists can be very helpful.....same deal with cell phone alarms.

Taking care of *you* is paramount.

I know there are members who are battling this alone and they should be along at some point.

We are here for you throughout your journey for as long as you'd like company. Ask questions...vent...whatever, we're all in this together....and we understand much of what you're going through.

Hope you'll post often!
Moderator - Lyme Forum
Jul '14 started what proved to be inadequate treatment ala PCP day after nymph deer tick bite
Sept '14 met LLMD - clinically dx'd with Lyme due to Bells Palsy - confirmed via CDC positive WB
Feb '15 transitioned off abx and started full Cowden protocol along w/LDN
Aug '15 started transition to Buhner's Lyme, Babesia & Bartonella protocols
Nov '15 stopped LDN - 98% healed!

Tillybear
Regular Member


Date Joined Dec 2015
Total Posts : 383
   Posted 4/6/2016 5:49 PM (GMT -6)   
I'm not alone but sometimes it feels like it as DH isn't quite the caretaker one would hope for. Still he is here and will do what I flat out ask. But we all know it's really lonely and it must be moreso for you.

(((hugs and a cup of tea for you)))

I'm glad you have some good friends, though.

vcast
Regular Member


Date Joined Apr 2013
Total Posts : 417
   Posted 4/6/2016 6:35 PM (GMT -6)   
Hi Arib- I want you to know that you are NOT alone with this terrible disease. There are a lot of us suffering, it's an epidemic and there are without a doubt hundreds of people in just your area with it who are just as lonely.

I'm also alone, but recently joined a local group here in the DC area. I'm recommend you do the same. Talking about this disease and the ridiculous controversy in person and here online really saved my sanity.

Probably kept me from killing myself too.

-Vince
4th Year with unkillable lyme
IgG positive still: 93/83, 66,58,45,41,39,34,30,28,23,18
IgM is now back AGAIN

My Supplements

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 4/6/2016 9:46 PM (GMT -6)   
welcomb to the club..........

Hmm...How many live alone? Quite a few I suppose.

The real question is how many of those are able to CONTINUE living by themselves while dealing with lyme. The idea of not working is generally not an option for those who live by themselves. It can be somewhat amaising what one can accomplish if there are minimal alternatives. I imagine many jobs have been lost, (me) and new ones started (me to) while adapting to this illness for the chronic sufferers.

On the plus side your time is your time, and the research required for this is very time consuming. Focusing on what you CAN do seems to help. We can all learn from and adapt to our handicaps. That means making the best choice, not the most enjoyable one. I tried my best to keep moving around even if I didnt have to, and got out of the house on winter weekends just for a change of pace. I still spent many hours couching, and you know what? - there was no one complaining about it !! And if you enjoy music, well, you obviously know by now you can listen to whatever YOU want, when you want too.

Not getting out/ or worse, not getting out of bed is best avoided. I was never bed ridden, but I'm, also one to avoid that at all costs. I crawled out the door to a car ride to the clinic in my worse pain episode (one weekend and a couple days off work).

How you deal with living alone is as much about ones personality, as it is your state of health - well, to some extent. You have to keep busy and stay ahead of the curve ball lyme throws at you. The Saturday morning I awoke 80% blind (darkness), I figured that was it, part of me though death was very near. By Monday morning I could see enough to function normal and even went to work after lunch. Not knowing what lyme can throw at you is worse than living alone in my opinion.

The financial burden of living alone with this is hard, its not for those who had an expensive life style, teaches you the basics of modern survival. I actually started a seasonal side business (more of a side gig) to pay my lyme bills - I had no choice. Did it when I could. Now I can actually save some of thi$, its no rags to riches story though LOL.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 4/6/2016 9:50 PM (GMT -6)   
arlb I think there are many people that feel alone even with others.

Lyme is so isolating. No one knows what you feel and you can't explain it.

This isn't a cold that others get and can relate to.

I think we all feel somewhat alone, even if we aren't.
Moderator-Lyme Forum
Bit April 2015.
July ’15 GP said sinus infection – Zpac
Quest lyme test negative
Aug ’15 LLMD - Ceftin and Biaxin – lyme test positive
Sept ’15 2nd LLMD - Beyond Balance
Sept ’15 started Buhner but continue Beyond Balance
Mar ‘16 feeling great but nervous like the other shoe will drop.

marigold33
Regular Member


Date Joined Aug 2012
Total Posts : 399
   Posted 4/6/2016 10:10 PM (GMT -6)   
alrb, Yeah I live alone. I've lived in a little studio apartment ever since I got my diagnosis a few years ago. I was always the caretaker in dysfunctional family of origin, and when I became sick they couldn't adjust to my not being just okay all of the time.. their abuse escalated.. so I guess you could say I am estranged... I spoke to them for the first time in a long time a few months ago and was told I'm no longer allowed in their house.. Kind of blew my mind as before I was sick I was very precious to them. I am blessed to have a job that I can maintain despite being very sick.. I teach music lessons, students come to my apartment and I sit with them and help with with piano and songwriting... It's so low impact that I've been able to remain effective at it and survive. I certainly can't pay for expensive treatment, but I see an inexpensive integrative doctor and do the best I can to get better and also keep developing my career, my dreams and interests, my friendships. At this point I actually have a fear of NOT living alone, as I live such a rigid and contained life so as to maintain my wellness... Adding people feels like dangerous wild cards. Still, I'm trying to push myself a little on that front and accept some dates again. I'm available if you ever want to talk strategy, etc. It's difficult for sure but I also feel I've learned a tremendous amount from this whole experience. You can't live with illusions when you have lyme! I feel like I have a hard won clarity which I wouldn't trade back in.

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1682
   Posted 4/7/2016 12:15 AM (GMT -6)   
Welcome alrb. I also live alone. I'm an empty-nester. My kids (25 and 27) live about 15 minutes away as does their Dad who is a great friend and by far the most helpful of the lot. Who'd of thunk it :-)

I'm still on payroll as I'm a primary in the corporation and they opted for me not to go on disability. I work from home and go in only when necessary. I know that's a huge plus.

PeteZa is spot on. This is a very isolating regardless of if you are alone.

I don't know if this will apply to you or not but most of this was spot on for me. willtherebecake.org/2016/04/04/emotional-complexities-of-healing-from-lyme/

alrb-Depending on where you live there may very well be services available like care rides which provide rides to doctors appointments and so much more. If you are not up to searching let those of us who are search for you.

I use a food service. I have organic, gluten free, dairy free dinners delivered once a week. It's pricey but due to issues I had pre Lyme lifting a pan was out of the question.

alexbshuman
New Member


Date Joined Apr 2015
Total Posts : 18
   Posted 4/7/2016 2:20 AM (GMT -6)   
I live alone. Could you elaborate. What do you mean manage? With the physical aspects or the emotional aspects? The medications?

arlb
New Member


Date Joined Apr 2016
Total Posts : 5
   Posted 4/7/2016 9:11 AM (GMT -6)   
thank you for all the replies. the emotional piece is certainly huge. for better/worse, i also have a stand alone mental illness so i had several emotional support pieces in place previously, which i think was helpful. still, there is certainly no getting around the isolation.

the practical advise is really useful to me. i live in a fairly small space but just cannot figure out how to keep up with cleaning, dishes, laundry, feeding myself the way i want to be etc. i had to leave my job a few months ago, so it's an energy thing over a time thing right now. living alone or not, what are some of the ways you've handed over some pieces to make it manageable?

i qualify for meals on wheels, but neither of the local meal sites can do gluten-free. and i've tried wrangling friends/my community into regular help using care websites with calendars etc but not to much success. what else should i try? what has worked/not worked for you?

project
Regular Member


Date Joined Jun 2015
Total Posts : 436
   Posted 4/7/2016 10:13 AM (GMT -6)   
I live alone. In many ways I think it has advantages in terms of making progress against the disease in that caregivers and friends often impose social obligations and demands that are counterproductive to your healing.

I had moved back in with my parents for about 6 months before I left again. In some ways living with them made some things easier, having cooked meals for one. But they didn't really get Lyme and in the end having them gripe at me for "being lazy" when I was herxing and couldn't do much drove me to move to a different area.

My mom unfortunately got bit by a tick about 1 month after I left, and now she gets Lyme. It's sad but true that generally people will not understand Lyme or what is involved with getting better unless they experience it themselves.

Sometimes I fantasize about living in some kind of Lyme sanatorium in the Alps. Something like in Thomas Mann's The Magic Mountain. Given that I don't have that kind of money, I think my current setup in a small apartment is pretty good. I can walk to a whole foods in case I'm herxing too much to drive. My gym is also a couple of blocks away.

I think to get better from Lyme in any reasonable amount of time you need to do treatments that will make you herx like crazy and push you outside reasonable bounds that are expected by social convention.

I have seen many old posts on here where people were trying some treatment and just couldn't keep up with it because it interrupted their social life. Fast forward a couple of years and they're still posting on here, retrying the same thing they had stopped.

So I think that living alone, minimizing social commitments, and pushing through treatment, possibly going for days on end only semi functional during herxes is what is often required to get better. I try to stock up on food ahead of time and make sure I have plenty on hand if I can't leave my place for a bit.

Don't let people monopolize your time that you could otherwise use for what should be your #1 priority: getting better. Unless you have a dedicated caregiver that is completely understanding of your treatment and selfless (unlikely), I think in many ways they can impede your healing.

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 4/7/2016 12:30 PM (GMT -6)   
Hi arlb,

I live alone. Well, I live half-time with my two teenaged children, which in some ways is, I think, worse. In some ways, however, it's better. I agree with astroman--if you live alone, you don't really have the OPTION of not working. Which again, is a mixed blessing, I think.

I'll explain. My kids are my company. Along with my pets. And since Lyme has caused me to withdraw from pretty much everyone else, they provide me with essential human connection. But they're teens--they're not good for much in the way of emotional support or getting things done around the house, unfortunately. So when they're here they present an additional layer of physical work for me to do. No matter how many times I nag them, they leave crap around the house, which I then have to clean up.

Pets are similar. They are a source of comfort, but also a source of more work. However I can't really expect my dogs to go out and feed the chickens or mow the lawn when I'm feeling especially weak. I can ask my 16 year old son to do those things--and if I'm lucky, he'll do them (sometimes). :)

Regarding work--I think if I had the ability to quit or cut down on work, I might have at my lowest point. And that might not have been the best thing for me, at the end of the day. Work forced me to get out of bed on days when I just felt like curling up under the covers and crying. Work forced me to get out and interact with people on days that my kids were with their dad. So mixed blessing there too, I think.

Sometimes I really, really wish I had a partner to help take on some of the burden of caring for the house, the two jobs, the kids, the pets. But at other times I'm really, really glad that I don't have to answer to anyone if I want to schlump around the houses all day in my jammies. I don't have to feel guilty if I don't feel like having sex with someone. :) I can do what I want, when I want. So mixed blessing.

I realized I really didn't answer the question. How do I manage? I DON'T have many friends, as Lyme has really caused me to draw away. But the few I do have really helped me through the darkest parts of these illnesses. And this board helped tremendously, too. Despite my antisocial feelings, sometimes you just really NEED someone to remind you that it will be OK, that you're not alone, that someone gives a crap about you. A couple of friends and this board did that for me on the days when I thought I just couldn't do it anymore. Other than that it's just been a matter of pushing myself. I had no choice, so I did it. But my psychological symptoms were worse than the physical ones. If I literally physically could NOT "do it," I don't know where I'd be.

Post Edited (notquitesoscared13) : 4/7/2016 12:34:21 PM (GMT-6)


jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1682
   Posted 4/7/2016 1:02 PM (GMT -6)   
alrb feel free to email me.

Janet

Garden Peace
Forum Moderator


Date Joined Sep 2012
Total Posts : 4191
   Posted 4/7/2016 4:14 PM (GMT -6)   
Welcome to the forum. I'm glad you found your way here since there are many people here to help you and offer support too. Ask any questions you need to and you can email people too if you need someone to talk to. Just ask them.

I hope you won't feel so alone now that you're here. I wish you the best on your road to recovery.
Lyme Forum moderator

mindful67
New Member


Date Joined Oct 2017
Total Posts : 12
   Posted 3/5/2018 11:27 PM (GMT -6)   
Hi,

I just posted a new topic "Afraid of Being Alone?" My issues have less to do with the logistics of cleaning, cooking, etc. (though those things are hard for the first time in my life) and more to do with the emotional fears and loneliness. I was the most social person prior to Lyme. It's a paradox in that I want nothing more than to be around people, socialize, work, workout, etc. and then am triggered by all that I have (praying just temporarily) lost in my vibrant and full life.

I'm looking for any support in Miami... People who can relate to what this is like....

Wishing healing and wellness to all,

Ilana
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