Advice needed : how do you know when you’re okay to go out ?

For the past months, my condition has deteriorated. And for the past 3-4 weeks, I don’t know what I can and can’t do anymore. I have no way of knowing what I am capable of doing for a specific day.

For example, I think I’m well enough and decide to go run an errand (by car). Stores are only 10-15 minutes away. I get to the store, but before I can even start trying to find what I came for, my legs are too weak to walk and I am so dizzy I risk fainting if I keep going. So I go back to the car, rest for 1 minute and go back home empty ended.

One day the lady at the store had to help me back to my car. I was only in the store about 5 minutes.

This is very annoying and counter-productive. I waste precious energy to get something I need but only make myself worse. I live alone and not everything can be ordered online, so that’s a big problem for me. My goal is to be able to go out maybe twice a week, a few days apart, to get the stuff I need.

I’m looking for advice on how to determine when I can actually physically go out and when I can’t. Hoping it’s possible...

 

I think adding the word "out" to the end of your title just before the question mark would be a good idea. As it stands I wasn't quite sure what to expect before I read your post.

 

Thanks ! I was having trouble expressing my thoughts.

 

It is normally possible for me to determine if I should be doing stuff outside within a 'few' steps from my street door, I often, depending upon the need, ignore this. It's highly subjective and, in part, my decision to continue, or not, is based upon what is wrong, and prior experience with how well I have dealt with that issue before.

I make a lot of mistakes, even with that method and experience. These normally become obvious fairly soon.

If something has to be done, rather than I want it to be done, and there is no other acceptable way of achieving it, then it gets done, and sod the consequences, as in that particular class of things, the consequences of not doing it would always be worse than those of the payback.

I have got stuck, unable to proceed, I have fallen/collapsed, in shops and on the street, I have crawled back home over hours. I try and avoid going out if it looks probable these will occur, that's just experience with my particular body and ME.

I, still, don't get it right all the time, but most of the time I do, if getting it right encompases dealing with significant pain, illness, cognitive shut down, and just general bad stuff, for as long as is needed afterwards.

Sometimes going out is worth it, sometimes it's not - I rarely go out for 'pleasure', as it's not, I almost always have a definite and normally singular aim, although this may be weighted by how stir crazy I'm getting. I seem to average one trip out every couple of weeks.

Is there any advice in that lot?

I would doubt it, it's a personal judgement call, unfortunately I would suspect its necessary for experience to be gained and weighted depending on need/desire.

 

A supermarket shopping trolley does the job, inside anyway. Being prepared to just stop when needed is also helpful - not that it's normally a conscious decision.

Try not to use baskets, even if you're only going in for one thing, they (baskets) may not be that heavy but the drain is cumulative and ever increasing. Use a small trolley instead, which can also be used as a support.

If lying/standing bent over a shopping trolley, using it to stop from falling and give you time to 'recover' when your legs/core have failed, isn't enough to keep you upright (ish) then that's one to add to the "shouldn't have gone out today" log.

Pick your times, try and go to a place when you know it will be as quiet as possible, so less people to avoid, less time queueing etc.

Is there somewhere else, that involves less walking/standing/queueing where the same objective could be met etc.

All things to think about.

That sort of thing is helpful, but at the end of the day, if you're not capable at the beginning.......

 

I'm so sorry to hear that you've got worse recently, @Dechi. I hope it's only temporary, and your condition improves.

Well, the 10 -15 minute drive alone would tire me out before I even got into a shop! I LOVED driving before I got ill, and found it a pleasure, but now I rarely feel safe to drive, even at times when I've regarded myself as mildly suffering from ME.

It takes a lot of concentration to drive. I wonder if the journey to go shopping is straining you before you even get there?

 

@Wonko there is a lot of valuable input in your post. That’s exactly what I was hoping for, meaning honest life experience. Thank you. I agree about the supermarket trolley, I always use one and lean on it. I put my handbag in it, it’s too heavy for me to carry. I never use baskets, way too heavy.

I wish my body would let me know before I even go out, but that hasn’t happened unfortunately. I mean, I feel like crap but I always do, so that’s not a sign...

@Trish that chair is something I have been looking at for a while and considering buying. Maybe in the next few months I will be able to afford it.

@Squeezy Thank you. It might be the case this driving is wearing me out. I have no clue. I have stopped driving long distance for about 1 year now. I use a paid service to drive me to my doctor’s appointment and have my kids drive me to family outings or I just don’t go.

 

I had a several year period of being completely housebound, but am now to some extent able to go out with care and planning.

Going shopping only gets attempted if I can rest the day before and the day after and have nothing else that has to be done the same day. So if something else crops up, going out has to be abandoned.

I do my shopping on a Sunday at the local Co-op, as I can usually park near to the entrance that day and it is usually quiet. Chose this supermarket because it has the least walking, not because it is my preferred shop. However I have to accept that I may just drive out of the village then turn home, or if I do drive the twenty minutes I may have to just sit in the car a while before driving home again, alternatively that I may not get all the way around the shop, so I don't usually have a fixed shopping list, just get what I can manage that day.

This activity is more for self esteem rather than what is essential as most shopping is done online for home delivery. Indeed as I am currently taking my cat to the vet a couple of times a week, shopping or any other going out has had to be abandoned.

Not sure if this constitutes advice, helpful or otherwise, but it does sound we are currently at a similar place. I guess what I am saying is to try to pace, to be aware of what one can currently do and accept one may have to abort the mission at any time, all of which you are probably doing anyway. I am managing to shift my expectations to see just getting out as an achievement and a fun adventure in its own right.

 

Do any of the people that use such as Fitbit or heart rate monitors find that this gives them more concrete data to help with activity planning and pacing, or does it still require an element of trying to be self aware and guess work?

 

Be careful about standing too long in a queue as well - I used to take a light folding garden chair when first ill but have to do everything online now.

 

Have you worked out what your 'best' time of day is for doing things ie your energy envelope?
It was only once I'd figured this out and stuck to it that I could gauge whether or not I was 'up to' doing something. Of course it's no guarantee, and other things can still mess it up.

 

@Dechi I stopped putting myself through this type of uncertain stress. Sitting for me did not help much because I needed to lie down in order to 'recover'.

When I became ill and for many years after there was no internet. Can you hire a home care worker who can take care of your small errands ? I did this years ago and found it very helpful.

For 'test runs' I would go out for short walks to build my confidence and measure if I am able to 'hold up' under less stressful circumstances, but for many years I could not. Unfortunately that was the reality.

 

In my experience, the simple walk to my car will give me indications of my capacity for outings, and will determine how long i can go out for.

My particular symptoms determining that would be headache or lightheadedness, the amount of tinnitus, and how much lactic acid fills into my legs as i walk (about 75 steps to my car) (this would present as heavy legs and particular pain that ressembles fatigue in the legs)

If you are not well to start with, any kind of walking will result in rapidly loosing capacity. I would suggest you use store scooters in that case. If you have to goto the mall, sometimes you can have a golf cart service. Also some stores allow you to shop online and it gets delivered to one ofmthe designated parking lot to pick up.

Lastly, if you must go out, sometimes wearing compression stockings and making sure you are well hydrated will help you a little bit if you have POTS or are prone to drops in blood pressure. Also bring a snack. I usually avoid rush hour like plague. Can’t do rush hour.

 

I can't get out at all. Food is online, clothes online and I get the occasional taxi to pick up prescription for me. I used to ask (again occasionally) friends, family and neighbours to get something for me. The chats when they delivered were too much so I rarely do that now. It is impossible to Communicate that talking is very difficult also. I'm not able to help you at all Dechi. I learned my own limits the very hard way and I'd advise anyone else to be very careful if they can't make these trips without payback.. My motto now would be that if I could get out I'd do something that I would enjoy like a coffee shop., sit looking at the beach for a while. Online shopping has been so good that I think I'd never spend my time doing a weekly shop at the supermarket. Browsing in amazon for books is a treat, I would be lost without that one. I hope you find ways Dechi to stay in touch with the outside world, it is so precious if you can at all.

 

I would echo everyone else’s comments here. I avoid shops like the plague. It’s actually reminded me of the time I was being treated with exercise therapy. I remember thinking at the time that I would know I was better when I could carry a shopping basket.

What a fool I was. Now if I have to go to the shop I take a trolley or only go to the corner shop for a couple of bits that I can hold in my hands (6 eggs, a red pepper etc). All the rest of our shopping is online. I’ve recently started doing clothes shopping online (rub being taking it back for return postage, but I have Mrs and master Sloth to help with this).

When I do go out I check heart rate (bad day it rises faster and stays high), heavy legs and pain. Main measure is the number of minutes I’ve already spent in the fat burn zone and whether I have enough left (for me I allow myself an hour a day normally, shower takes 15 minutes so everything has to be done in 45 mins worth of light heart rate “activity”). If I’ve been good in the week I might push it to 2hrs but as long as the following day I can rest and do less (normally forgoing a shower).

Lots of aborted attempts

 

Wow, so much great information, thank you for all your replies ! I wanted to reply with multi-quote with sections of everyone’s comments but I guess I don’t know how, it didn’t work... :-(

I am (sort of) happy to see that it’s not just me, it seems really difficult to predict when we can safely go out. I usually try to skip at least 2 days before going out again. I don’t shower everyday to save energy (I wash with a cloth if I have to), I rarely cook and I try to do little bits of cleaning here and there, maybe 3-4 minutes at a time.

I guess it will unfortunately come with experience. I’m at the point now where I need to buy some kind of walking aid. There’s the money but also my pride and fear of being embarrassed that are in the way. I need to let go of those.

Mornings are usually really bad for me, so the ideal time to go out is between 11 am to about 2 pm, so I can nap if I need to and be home for the « end of the day » fatigue.

One thing I’m grateful for is still being able to eat late breakfast at my local restaurant. I can be served real fast and be out of there in about 30 minutes, so it’s tolerable. And since I live alone, it’s a welcome distraction from the 4 walls of my living room.