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What I Can And Can't Do


Janey
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I tried to go to the grocery store this morning, it's just down the road, about 100 yards from my front door. I had a tall glass of water when I got up and my salt tabs and was going to buy a couple of eggs for breakfast as well as lots of veggies, fruit, soya milk (heavy stuff.) I walked down to the shop slowly (no hills) and by the time I got there I was dripping with sweat and my head was thumping (head pressure etc). I got into the shop and started piling food into my basket and as it got heavier my arms started shaking and being painful, so I could no longer carry it. I started pushing it along the floor with my feet. I started to feel faint from standing up so long in the store so had to go into a deserted corner and compose myself by putting my head between my legs. I started queuing up feeling awful, paid for the goods then had to carry the three (mildly heavy) bags home. Well, it took me about 45 minutes to get up the road, inbetween pausing to put my head between my legs, thumping headache, sweating, aching wrists, arms, hands, aching joints in my feet. And since I've been back I just feel like going to bed again. I want to lie down, but I have to get on with the day.

Do you think it's ridiculous to ask for help with this? Or as I'm "managing" so far, will it get better and my body get more practiced at it?

janey

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Janey, that does not sound right, healthy or (if you will pardon the term) dignified. If you cannot do something, do not feel pressured to do it! If you can't walk that far, what about: a walker, a neighbor, a neighbor's child (my seven year old can carry groceries just fine!) I think you are putting yourself at risk, forcing yourself to go through that. You may be slightly deconditioned, but if three blocks of walking does that, you are in no shape to continue to do it. Don't give up, there will be days, even weeks, where you can do it, but right now please ask for help!

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Firewatcher, thanks for replying, and thanks for saying that. I have such a hard time adjusting to the thought that I have a sort of "disability" and I know that my family and friends would laugh at the announcement that I need someone to go and get my groceries for me. They really don't think I need it and call me the "Queen" (as in I think I'm too ill to do some things..) As they're unwilling to acknowledge the extent of what is wrong with me, it's going to have to be a decision I make for myself. It just feels so undignified for a twenty-something to not be able to fetch her own shopping!

janey

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Janey- I know it is so hard to need help!! But you NEED to take care of yourself. I went to the market yesterday with my mom and realized that I can't even read or think when I am shopping... I only made a partial list... thinking I would remember the basics....I came home with no eggs, no milk, no butter! Couldn't make it to the dairy isle and I had help!!! Can you get help in the store? I go to a market where they have people to help you.. you just have to ask and you should! also if you feel a little better later in the day... can you go to the market then? Mornings are harder for many of us. Sorry that you are going though this. It is so hard to ask for help... but someone out there will want to help you. Best wishes -kayjay

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If you have someone that can pick up groceries for you I would ask them. At least ask them when they go to the grocer would they mind picking up a few things for you. Since the grocery store is close a scooter or elec wheel chair would make it easier for you. Would your insurance pay for one or the rental on one?

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What about using a grocery delivery service? Most towns have at least one grocery store that delivers groceries. If you don't want to ask for help shopping (and like Firewatcher I really think you shouldn't be getting groceries/shopping by yourself right now), that might be the best answer for you.

Good luck,

Jana

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I think everyone here has offered great suggestions. When I finally accepted that I was sick, the first thing to go out of the window was vanity. I got a wheelchair (used and cheap) for situations just like this. I'm fortunate because my grocer has lots of motorized carts, even though it seems silly for a healthy-looking 36 y/o to be seen riding one :o . I also never go shopping alone. Just carrying all the bags out to the car usually wipes me out I become unsafe to drive. I like Firewatcher's suggestion about having a neighborhood kid help you. I'm sure they'd like to do your shopping for you in exchange for a tip. But at least if you had a wheelchair you could remain seated all of the time and just keep the groceries in your lap.

Poor thing. I can relate to how you felt. I hope you can work it out so you don't have such difficulty next time.

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Oh, gosh....do I ever understand. This is a dilemma I face over and over. What does it really mean to "not be able" to do something? I think I've had some sort of autonomic dysfunction my entire life. It was certainly mild, but it was there enough that I knew I really couldn't quite keep up with everyone else. Since I was a very thin, pale, frail looking blonde, I always fought against the "weak" or "not strong enough" or "fragile" sort of labels. Therefore, I pushed to not only keep up, but to try to outdo everyone else. It became just a way of life for me.

Now, many times, I don't know what "can't" means in a very literal sense. I do things often that **** near kill me, but I cannot just admit that no, I really can't do this. Fortunately, I have a husband who understands this about me, and often times, he'll just do most of the things that need doing without me every really getting the chance. As to shopping? I couldn't imagine going by myself. I'd probably forget what I went for...that's happened all too often. I've also forgotten how to pay for things, how to use my debit card, and numerous times I forgot to get my change. Since I have help, I've given up doing it on my own, and since I can't drive any longer, it's rather a moot point.

Do your stores stay open later in the evening? If I need to go out, I'll often have my husband take me later in the day if possible. I almost always will feel better at that time of day, and I can spend my whole day preparing to go. *****, doesn't it?

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Wow! This sounds familiar. Janey, it sounds like you're in the same boat as my wife. She's been known to utter such phrases as "I wish I could go to work and sit in a boring meeting" and "I wish I could endure the drudgery of grocery shopping". The fact of the matter is that for her, and you by the sounds of it, those tasks are just not possible at the moment. The hardest part is coming to the realization that what you should be able to do without thinking about it is now very difficult. The second hardest part is bringing yourself to ask for help with such things.

I know it's hard as we've been down that road. My wife hasn't left the house much at all this past year except for medical appointments or very brief outings on good days. I pick up the medicines at the pharmacy, buy the groceries, cook the meals, and clean the house. We've both been very self-reliant people up to now so I know it drives her crazy not to be able to help me with these things. In fact, I come home from work some days to find she's feeling terrible because she over-exerted herself - wiping down the kitchen counters never used to be a physically demanding task.

Take it from someone who's been there - ask for help or contract for it. It was the most difficult and awkward thing for us when I finally broke down and hired a cleaning service to come in to clean the house. I felt like keeping the place clean was the least that could be expected of responsible home owners and that "maid services" were for the rich and lazy. But, the fact of the matter was that I was trying to do everything and things were getting ahead of me and I was driving myself nuts spending all my time that I wasn't at work trying to do everything around the house. Something had to give.

As others have said in this thread, ask for help from family or friends. Or, if you don't feel comfortable doing that, check out home delivery of groceries. It will feel strange, but it will save you peace of mind (and your health) in the long run. You can spend your energy trying to do light exercise or something else to build your body up gradually instead of halfway killing yourself getting a carton of milk.

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I am so sorry you had to go thru that. It is terrible somedays. I look like a pretty healthy 46 year old and no one understands when I have to say no I can't do something. I always put my feet up. Just sitting with them hanging down is still no good for me.

When I attempts too much boy do I pay dearly afterwards!! When we can't we can't...that is it. I don't know who said it but there will be days we can...but when we can't...just ask for help. Your family sounds like they are not understanding your illness. You mentioned they canlled you the Queen...well we are in the Court here!!

I just gave mmy 72 year old mom a booklet on invisible illness. She started crying and said she just didn't realize.

You keep going girl!!

Erika

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Hi Guys, thanks so much for all your support and being so understanding. I didn't realise you would be, as I thought there were obvious, clear lines about what is manageable with dysautonomia, ie. as long as you can still actually complete the tasks you used to do, you can still "do" them and just have to accept it if they make you crash or they last five times longer. I think I'm trying to go about my daily business like I always used to and it's getting harder and harder and I haven't switched mindsets yet. I just feel like I'm constantly falling short.

But nobody seems to understand this. My family, my friends - they think it's selfish of me to only be able to see them in my home and that they have to come to me all the time. There's an answer for individual things within the big issue, ie getting a local kid to do my grocery shopping or getting it delivered from online, but the bigger issue has to be dealt with. It's like I need to make an announcement to everyone. I went to a friend's housewarming the other day (we live in the same village and she's only a few houses down) but I got there and realised there was a removal van outside and the purpose of the gathering was actually to MOVE her into her house by getting lots of hands to carry stuff. I couldn't cope with the thought of not helping and I actually thought it was a nice group thing to do (for a healthy person) so I mucked in with everyone else, had a POTS crash, was out for a week. I must just be a people-pleaser!

janey

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