living alone with lyme

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.

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!

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

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.

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.

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?

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)

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.