Living Independently With Pots

[heathmcev]

Hello lovely POTS people! I am struggling here.

How do all of you single folks manage to live with POTS/etc when you have to live alone?

I was extremely independent in my 20s, working by butt off & traveling all over the world before becoming ill and having to move back home to my parents (who have been *amazing* btw). Four years of searching for answers, and here we are. I finally just got a POTS dx a few months ago, but my parents are ready to retire and sell their house. So I am faced with the intimidating prospect of having to strike out on my own, single, in the midst of figuring out this new illness, and unable to work very much or have energy to do much of anything. I know that I've been incredibly lucky in having them here for me. But what was once so easy (being independent) has now become rather difficult due to challenges presented by my various illnesses. To be blunt... I'm scared!

So... how do you all support yourselves emotionally, physically, etc? How do you manage grocery shopping when you've crashed unexpectedly for 3 days and can't go out? Or don't feel safe driving on one day or another? Do you have dog-walkers? Are any of you unable to work outside of the home?

I'd love to hear your strategies, stories, etc! This feels like a huge, steep mountain at the moment...

[juliegee]

Pretty intimidating huh? Sorry you're having to deal with this! I hear that your parents are selling their house and retiring, but are they planning on still living in the area- in a smaller house? Is there any chance you could plan to live nearby so you could have a "safety net" should you need it? If your parents can't offer that help, how about other friends or family members or a combination of the above? My guess is that things will settle down to a "new normal" and you will find a way to regain your independence. Just knowing that you have family/friends nearby to call upon will give you a measure of security.

I'm functioning well now, but I've had times in my life where I was not able. I once asked my Mom to come live with me to help me care for my son. She wasn't able, which was probably a blessing... It made me really push myself. I've always done what I had too & then crashed OR called upon friends to help in a pinch. I have a son (also with dysautonomia) who's 16 y/o and I worry about whether or not he'll be able to strike out on his own. I fear that he'll stay in bed 24/7 and not attend school/go to work. AND, I worry about his pill case. he takes about 15 different meds & even I make mistakes filling it. How will he ever do it? If you've got that figured out, you're a step ahead

Many here struggle with this issue. You're in my thoughts and prayers as you figure this out.

Julie

[Lizzegrl]

Dizzy, it really isn't easy, but there is a lovely sense of independence and empowerment, knowing that I manage everything in my life. It doesn't mean that I DO everything, but I do manage it. This may feel like a steep scary mountain right now, but it is something you can do!

I've lived on my own for many years, and it can be done. There are so many ways to manage your life and your illness - simple things like living someplace without stairs to climb, and making friends with neighbors so they can pick up milk when they run to the store, to keeping things like dried pasta and canned goods around, so that you never are totally without food when you have a bad week. I still of course have times that are overwhelming, and very difficult, but they eventually get better and I get back on track. If you take things one step at a time, you can break things down into processes that are much easier to manage and to think about. One of my things is using a pharmacy that is in the grocery store. I make one stop, and grab a few essentials if I am really really tired. They also have a drive thru pharmacy and delivery so if things get too bad I have options. When I found my apartment, I thought about how far the walk to the door from parking is, and chose a first floor place to avoid stairs, which are very difficult for me. There are really simple things that you can do that will make it easier living on your own. It may be scary, but it will also feel great being independent again, I am willing to bet!

Please, feel free to PM me. I could go on forever about how I cope with it all, but I don't want to throw too much at you at once.

Liz

[MelissaCrystal]

I just recently became single and moved into my own place, and it has been HARD. Sometimes I simply cannot take care of myself. But my strategy is to plan ahead---for the worst. Always have snacks around, meals pre-prepared while I'm feeling well, and just everything really easy to access and use. Lots of routine and planning involved in living on my own. If I go outside of routine, I travel into danger zone, but I've been trying to push myself so that I can be stronger for when that happens. So far I haven't had to call my ex for help. Though.....I haven't taken out the trash since I moved in. Kind of scared. I already hurt myself the other day picking something [not heavy] up.

I live in SF Bay Area so I rely on pub transit. I'm glad, because every day after work there is no way I'd be able to drive myself home. I turn into a zombie after working---well, maybe even during. It's tough...life is way too hard...but I do it. And when I get home I pamper myself as if I'm at a luxury spa, and it makes it all worth it. It's an okay routine for me...I feel pretty good about it.

Also, I cannot schedule two things in one day...ever. If I work, I need at least 3 hours before I work to get ready and feeling good, and then 3 hours afterwards to recover. Usually if I work, I don't do anything else that day. If it's something else I've got planned, maybe I'll see friends (if I have any at the time) in the evening, but otherwise I take it easy to prepare for work the next day. I work every other day to give myself recovery days. Unfortunately, it doesn't add up financially, but I'm still working on figuring out how to make more money with my disability... Illustration is my career, but man..freelance isn't looking too good in this economy.

[heathmcev]

So much great help! Thank you for your responses. I'm taking it all in & so glad to know you ladies are out there and strong!

Julie - my parents are going to be in the area probably about another year or so, then moving south (where it's too hot for POTS!), so that does give me some 'buffer' time to get settled, thankfully. The bummer is that I only moved back to my hometown b/c of becoming ill (I was in nyc & london prior, while still working), and don't have any other close family or many friends left here - they've all moved away. But being on my own will certainly force me to improve my social life! I also know my mom would move in w/ me if needed it for a while I hear you about your worries about your son. Organizing all of these meds & supplements everyday is crazy - esp when the brain fog settles in ("have I taken that one yet?")! With such a strong mother he'll do well! You sound like a good role model.

Liz - I'm loving the constructive ideas! I had been thinking about stock-piling groceries, and maybe when I'm feeling good I can make things for the freezer. The grocery w/ pharmacy is a fab idea & I'm going to investigate who has delivery here. Parking lot distances & stairs in potential buildings is also key. I have a feeling I'll be PMing you as I get closer to this move!

Melissa - I'm a graphic designer! So we have similar career paths. One of my hopes is to get more home-based work. I've been doing this with some success, but still get too tired to take on much of that. Maybe 2 hours here and there, so the on-location scenario intimidates me at the moment. Working every other day sounds like a great idea -- have you found it difficult to find freelance jobs that work out that way? I am completely with you on the limited scheduling front. If I have errands, that's the end of it for me - time to nap! Don't you marvel at how you managed to fit so much into a day pre-POTS?

[Csmith3]

I definitely agree about using the freezer a lot. When I'm well, I'll batch cook some meals (eg, slow cooker meals with meat, potatoes/rice and vegetables) and freeze several portions. Then I can just microwave a portion when I'm not so good, and at least I'm eating something decent. I always have milk and bread in the freezer. I get fruit and vegetables delivered once a week so I don't have to carry heavy stuff like potatoes and citrus fruits.

I now live somewhere without stairs and have been pleasantly surprised how much it has helped.

I live somewhere new so there is little house maintenance required. It is also a managed site. I'm not sure if this translates, so I mean I have a lease and the freeholder is responsible for the upkeep of the external areas. This means someone else does the gardening, cleans the windows, cleans the communal areas etc. It is not necessarily a cheap option, but has been very helpful to me.

I am fortunate to live close to a town centre and transport links. More or less everything I could need is within a 10 minute walk. This helps me to feel less isolated if I'm in a bad patch.

The internet is a wonderful thing and as well as keeping in touch with friends and family, getting groceries etc on line is always an option.

Good luck!

[rymac]

dizzyde

Your topic title caught my attention and I can relate. I can still drive and I'm going back to school to learn a new job that I can do. I'm moving two hours away from family and friends and will be own my own. "Yes" it is a little scary. I've been on my own for a while. I think it takes lots of planning ahead and being prepared. It's a full time job to make sure you have food (I'm on a limited diet), car is running ( check the tires, oil and fuel), find a doctor, pay bills and more. You have a very limited amount of energy and you have to decide what things are really worth doing. My parents are getting older and friends are getting busier with their own lives so I wonder what the future holds for people in our situation. That is scary.

I hope you find a plan that works for you. PM if want and keep us posted.

bluesman

[flop]

Hi,

I'm another single female who mainly lives alone. For the last five years I have had a flat about 50 miles away from my parents. It was in a block built specially for people who worked at the company I worked with so I have recently had to move out (stopped working last July but they let me rent the flat for another year).

When I was working full time and really ill I actually stayed with a good friend for many months. She is nearer to my Mum's age than mine and has her own teenagers but she took me in like one of the family. However I still wanted my independance - being able to choose what time to go to bed, what to watch on TV, what to eat for dinner etc. When i was over my really rough patch I went back to my flat.

I am in the process of buying my own house in the city I used to work in (I still hope to get back to work at some point). I have friends, hobbies and hospital doctors here and it isn't too far from my parents - I can still visit them most weeks. Due to a problem further up the "chain" of house buying I have actually been living with my parents for the last month whilst waiting for my house to become vacant for me to move in.

It is nice having my Mum about but I am still trying to do things independantly. For example today I went to Tesco (supermarket) to do a small shop, then used my wheelchair to let me browse in a department store (Mum's birthday this week so need to buy a present). After that I came home and went to bed for a few hours. Then got up and went out for a coffee. Now back in bed and hoping that Mum is going to do dinner as I'm exhausted!

When I feel well I stock up on frozen veg, microwave rice, pasta, tins of chicken in white sauce (my favourite stand-by dinner!), long-life milk and fresh meat and fish to put in the freezer. I don't really do much cooking (standing at a cooker makes me feel really dizzy!) but I love having a George Foreman grill. You can take meat or fish from the freezer and put it straight on the grill, you can also slice some veg and put them in the grill too. Easy fresh hot food without much fuss / effort.

Good luck,

Flop