The need for support vs the need for solitude
Coggles77 last edited by
How do people juggle the need for support, with the need for solitude/peace and quiet? I am single, but my best friend has been my housemate for 10+ years. She has been working from home for the last year, which wasn't a problem until I was approved for the NDIS last year also and started getting in-home support more often.
I think I'm struggling because I went from being home alone the majority of the time, to my best friend being working from home (thanks Covid) and being home the majority of the time, and now I have NDIS supports in and out a few times each week. By nature I'm an introvert and because I've had ME/CFS long-term, I'm used to a lot of solitude, both by choice and circumstances.
My best friend is away for two weeks and I decided I needed my own version of a holiday too - that is, a holiday from people. So I had my support worker do some extra prep (cooking and laundry) so I could go without her for two weeks. All I would need to do is get food and wash up. I changed scheduling for some of my other supports so I had these two weeks free. And It's been lovely, even though it's shown me again that I can't manage without support. I'm dreading the return of people...I wish I could have a few more weeks on more own.
How do other people manage?
It’s so good to read that someone else is looking for answers to this question. If I have to have someone call, for example to take a blood sample, I find that not being ‘friendly n chatty’ but just lying still, eyes closed n not talking seems to help me recover after a visit.
@Coggles77 totally understand. I cope better when I am alone, having people around me is so draining. Even if I’m not interacting with them, just having them in the house and being busy around the place totally destroys me after just a short time. I don’t know the answer other than explaining how it effects you and ask for your space.
@Siren your post is me to a tee. I had thought there was something wrong with me what with not even coping well with people just being in the house. I’m getting a bit better with that now as my anxiety levels aren’t as high.
I can relate. I find visitors tiring. A friend of mine sets an alarm when she visits so she doesn’t tire me out. As soon as her alarm goes off she leaves. Great strategy.
river last edited by
@Coggles77 I don't have the answers but I can relate. I have never lived alone and wouldn't be able to now, but fortunately my partner is even more introverted than I am and I actually find myself feeling lonely/unsupported more often than not. I am currently trying to get the NDIS and I'm really scared of being accepted because it will force me to get used to having strangers in the house. Being autistic makes this extra hard. I'm worried I'll be more stressed out and become sicker because of having more people around. I think setting boundaries around conversation/socialising is essential but hard to do.
@Coggles77 I am so pleased you did this! It would have been so nice for you to just be and not have to try and “be” or do anything else, if you understand what I mean.... it’s amazing how just talking that bit extra can be completely zapping or doing anything that bit too long.
At least when no one is there you are in more control of you and your energy!
Thankfully we do have people that help us though...
I am the same I do not like strangers in my house and I struggle if there are cleaners or other people here doing stuff I used to take sooooo much pride in doing!!
I do not like it one bit and the busy-ness just makes me feel more “ unable” I suppose is one way of putting it.
If only we all had a Genie and could just rub that bottle and click our fingers and be done with all the duties!!
I have not applied for ndis and I really should. I just can’t get my head around it right now.
Do you have an area in your house where you have your own space other than your bedroom that we are in so much already?
If there is another room maybe you can transform that into a space that either yourself or your housemate can use just for some peace and quite or tv watching .... if you don’t already have that of course?
I think talking about it is vital to. It’s so important to look after you and because we are home so much. Your living space really must not cause any added pressure or anxiety for any reason as much as is possible anyway when living and sharing with others.
It is very hard to explain to someone who does not have ME/CFS just how much little things effect us.
@Coggles77 Hi @Coggles77. Finding the right balance in your lifestyle suited to who you are, is very difficult. Having time just for me; a quiet house, not being disturbed doesn't happen much in my home. I suppose I'm just use to people being around and in some ways I have the opposite feeling. I don't like being on my own for too long. I feel vulnerable and uneasy. I need support and in a way I have become accustomed to it. Maybe it is a confidence thing. I feel my need for support outweighs my need for solitude. I hope you can find a way to incorporate the desire and need for solitude in your life.
Coggles77 last edited by
I'm glad I initiated this post. It's interesting reading everyone's responses and seeing how similar circumstances affect us all differently. I think I've decided that when I know my housemate will be away for a week or two, I need to take the opportunity to give myself this kind of holiday if possible. It's hard work on my own, and takes a bit of planning, but it's necessary for me.
I'm very fortunate that most of my support team, like my cleaners, I've been using for a few years and they've become friends. Most of them are very observant and understand when I'm not up to a chat and they just get on with things and leave me alone.
The upside of the NDIS and having support is that when I eventually live alone...once my best friend gets serious about saving and buys her own place...I think I'll get that good balance of support and solitude.
@Coggles77 Thanks for starting this thread. I relate to a lot of what you, and others, have said.
I’ve had housemates long term due to finances and have recently started living alone (that’s just how things have worked out).
I find I’m able to pace myself so much better without people around!
I’m also more introverted as well.
Juggling the amount of support you need versus the quiet time to rest and pace is a delicate balance, I’m finding.
I’m slowly learning to prioritise taking time out, either in small or little ways, as this doesn’t come naturally to me.
It sounds like you’re on the right track in terms of getting a balance which is more sustainable for you
@Coggles77 Hi, I can totally relate to your post and found myself in similar situation in January. Good on you giving yourself your own version of a holiday too - definitely a holiday from people when you're an introvert (which I am too) is really helpful for balancing need for solitude and not getting so drained by having people in your house - whether they are housemates, friends visiting or support workers etc. When my support worker had 3 weeks off in Jan, I decided to give myself 3 weeks off support and cleaners like you. It was blissful and I felt like I was finally getting a sense of "refreshment" and like I'd taken a holiday. Like you I really dreaded the return of my support worker and I found myself to be feeling very negative and quite bothered by going back to same situation. Like you even though I can't manage without support, before my support worker returned, I made myself a list of what things could I change about the support role so that it took less energy from me. My support worker is lovely and we are very friendly with each other (which has both positives and negatives - easier not to be chatty when you don't know the person well and easier for me to appear "rude" by not wanting to chat or not getting hooked into listening to conversations other people want to have when I don't know the person well). Things that changed for me that I was able to express clearly to support worker when she returned was: that I will lie down in my room while she is here at various times so that I'm not stuck engaging, interacting the whole time; that I would use some of her time to drive me to various apppointments (instead of driving myself) and getting her to run errands for me; having more "routine" tasks for her to do the 2 days per week she attends so that she knows what to expect and less need for us to engage and without expending my energy explaining new things I want done or how. I also limited the time period to 2 hours or 2 1/2 hours at most. I am spent by then even though my support worker is meant to be with me for 3 hours.
My support worker when she returned seemed a little upset with my setting these new boundaries but once I explained it wasn't a personal thing towards her at all, she has been fine with it and it's working quite well. I put it across saying that when she was on holiday, by giving myself a break really helped me have greater insight into what helps me conserve energy and what drains me too quickly. Explaining in this way made it clear for both me and the people who support me and they want to help me so they are happy to go along with my revised way of doing things. I hope some of this makes sense to you and you might be able to glean something helpful from it. All the best to you! I'm so glad not to be the only one who has felt like this!!