Living Life, Within the Limits of Chronic Illness

Surviving Home Alone

To most people this probably sounds like some over dramatic post, and they’ll think I’m being silly making such a big deal about such a small thing like being at home alone. Which is kind of the reason for writing this post; to highlight that this seemingly insignificant thing is actually quite a big thing when living with moderate – severe M.E. (I say moderate – severe because for the most part I’m on that border between the two).

There is nothing I would like more than to be independent, and be able to live independently. However, there is no way it is possible at the moment. The unpredictability of this illness barely allows it to be considered.

Some people believe confidence is the biggest issue with being left home alone, and to a certain extent they are right. BUT this isn’t the type of confidence which can be built up to the point where you’re fine with being left home alone. It isn’t all anxiety that can be overcome. It’s a confidence which is difficult to build up because one day, even one hour, I am able to do something simple like slowly get up or down the stairs, the next my legs are far too weak and shaky to even attempt it without the aid of someone else. And it is often impossible to predict whether this will happen; if I have done too much that day I can often predict it will happen, but other days where I think I have paced myself fairly well it can still happen out of the blue.

Imagine living like that and surviving just a day alone at home, where the bathroom is on a different floor to the bedroom. Not knowing if the next time you go to stand up your legs will support you, or if you’ll feel so faint you have to lie down until it passes.

It’s why whenever I am left home alone for a few hours, I have to be on the ground floor so the bathroom is on the same level, and this in itself restricts the time my parents can be out anyway; if they go out in the evening to meet friends they are conscious of the fact I am having to lie on the sofa unable to go to bed even if I want to because I can’t be sure that (a) I’ll make it up the stairs on my own okay and (b) if I need the bathroom once I’m upstairs, that I’ll be able to get back downstairs to it. They have to make sure I’ve had a hot meal that day because there is no guarantee I would be able to safely cook even a basic ready meal, since you have to carry it from one place to another while hot, and on shaky legs when having to hold the plate with both hands due to poor grip, this is not always an easy, or even possible task! (And don’t even get me started on following the instructions with a brain thick with fog!!)

This also means I have to be up and downstairs at least, before my parents go out in the mornings, as I don’t know how strong my legs will be when I wake up, or if I’ll be feeling faint quite easily that day and need a hand getting down the stairs. More often than not because I don’t know how well I might manage with getting dressed, if I’m not feeling too bad, and will be home alone for more than an hour or so, I will not only be up before they go out but also get dressed and have my breakfast.

I am very lucky in the sense I am not often left home alone longer than a few hours, but when I am it is quite a daunting thing and over the years we have learned that it’s best to be prepared for the unpredictability of this illness. And so precautions have to be taken each time it happens.

It may seem like such a simple thing, and quite honestly it is something I would love not to have to really think about. But the fact is, with a slightly dysfunctional body like mine, being home alone is often something which is survived rather than the insignificant thing many people consider it as. That’s not to say I don’t enjoy being left home alone, sometimes having some peace from the hustle and bustle that comes with living in the family home is a welcome relief, and it means I can rest without feeling quite so guilty about doing so, but it can also be quite difficult and at times scary. With M.E. life never is quite as simple as it should be.

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  1. Helen

    That was a lovely post. Thank you. I am also in the moderate-to-severe area. I live mostly alone and within the next year I will be living alone entirely. I am 60 years old. There is no family to help me. I have made several adjustments that I am offering us suggestions it may be of some assistance. I changed what I wear. Everything I wear now basically could go on and 2 moves. I keep food and water by my bed. I can’t always get out. I have a great deal of difficulty eating. I can’t cook most of the time. When I have strength I cut up small things like vegetable trays, small pieces of meat and cheese. That is so if I drop them it is a disaster. I rest a lot and I just didn’t feel guilt a long time ago. The brain fog is particularly bad and getting worse. I often cannot trust my own decision-making. There will come a time when I will not be able to care for myself no matter how many outside resources I pull in. I will not go into care. I have made arrangements with my doctors physician-assisted death. This is legal in Canada. When I get to the stage, assuming that I do, with a brain fog becomes so bad that I cannot be trusted to live alone that is what will be put into action. I know this is not an optimistic message. Me makes you face reality like nothing else. This is simply the way things are. I’m so glad you have family.

    • Clare Wood

      I am so sorry you are in a situation such as you are. M.E. is so cruel. Thank you for the suggestions, I really appreciate them. Most of what you suggest I already do, although clothes always takes more than 2 moves to get on. I am glad you have managed to put plans in place which you are at peace with, I have no idea what I would do without my family but I know how very lucky I am to have them right now and I hold onto that each and every day. I only hope things improve for you somehow, and you can keep smiling despite the cruelness of M.E.

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