I've been unemployed since my diagnosis 7 months ago. I've been too ill and am still in limbo concerning my immediate health, so there's no timeline for me to look for to when I might be able to go back to work.
I'm 35 and have worked most of my life. I always thought that being unemployed sounded WONDERFUL, but it turns out it's more like being forced to eat ONLY your favorite food for months, eventually making it something you fiercely loathe and despise.
The days are all the same, except when I'm hospitalized, and even then, as that's been a regular occurrence (8 extended hospital stays in those 7 months) to where that doesn't break the boredom, either.
What in the world do people do to combat boredom? I haven't enough stable energy to volunteer, no money to start expensive hobbies like painting or photography. There are days when I can't even focus long enough for a video game (and Mass Effect 4 is coming out! I REALLY WANT TO BE ABLE TO PLAY THAT!).
I'd sleep, but that itself is also volatile and unpredictable. I can't predictably schedule it, which makes working and hobbies even more difficult.
I'm 35 and feel like the mantra I've heard every retired person say: "Now what???"
So, fellow lupus folks, what do you do to fill the hours when you're too tired to do anything, but too awake to go back to sleep? What do you do when you can't work?
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quirkytizzy
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I was in the same position. I've recently started doing freelance design work and only work on days when I can and at my own pace. Doesn't bring in much money that way but at least I have something to occupy me, slightly challenging but at an attainable level.
I hole up with my mini iPad: 😆 I visit my HU forums! And I read scand noir thrillers 🤓...something about their approach to detective work fits with my lifelong experience of diagnostic ambiguity 😉. And I look out the window with my camera at the ready in case some wildlife fun passes by 🦉🦌🦃🐘🐆🦍🦄....
Same here, quirkytizzy! I've been trying to keep my hand in by dipping into some online professional discussion forums, but since I am spending this morning filling out my application for ill health retirement, the time has come for me to accept that I must move on.
My family have also found that I am really, really bad at accepting their well-meaning advice ("Perhaps you could try...." they suggest. "How on earth do you think I could POSSIBLY do THAT??!!" I respond, graciously)
All I have managed to come up with so far (8 months into sick leave) is that I will be making my garden into a wildlife haven with little, manageable projects like making small woodpiles, hedgehog feeding etc. That way I figure that my hours sitting at the window will become a little more entertaining. I've bought some ID guides for tiny creatures like bees, beetles and hoverflies so maybe I will become an expert in micromoths or something.
But any ideas you come up with will be welcome here! x
That's a great idea, I love it! Perhaps if you ever take up gardening, you could look into permaculture? That's my mission when it comes to working outdoors, integrating habitat for wildlife into low-maintenance type of gardening which takes a lot less effort than traditional gardening, but gives good results. I feed wild birds quite a bit as well in my current home, because watching them at the feeder provides a fair bit of entertainment when I can't move round much.
Yes, I've done a lot more bird feeding this winter. Now my daughter's left home, I've been able to gradually dismantle the trampoline that occupied a big chunk of garden - it took about 2 weeks! It frees up a patch to experiment with; if you've any good ideas, do let me know
all kinds of ideas, but it depends on your own levels of interest, experience, handiness, and energy levels. A pond? Some dwarf fruit trees (I might advise against unless you can keep them small, picking up loads of fruit you don't need or want could more trouble than it's worth), perennial veg patch which self-sows itself?
Haunt Amazon and if you have a tablet or some way to read up, you can check out various ideas on kindle. I have a tidy little stash of stuff I've used over time to build up my permaculture garden, and adapt it more and more to adapt it to my energy levels (or lack thereof).
Hi quirkytizzy, like you I stopped working rather earlier than I'd hoped; I'm 41 now and stopped in 2011. I wasn't ready to stop at the time mentally but my GP explained to me that I needed to look after myself to look after my family. That's the way I look at things now, my job is 'keeping well.' My days are spent keeping as strong as possible with a great deal of pacing and rest, I attend gentle yoga twice weekly and walk a little as and when I feel up to it. Mindfulness plays a huge part in helping me cope with symptoms and find being outdoors extremely comforting. I've learnt to keep negativity at a distance and not spread myself thinly. By pacing, my fatigue is controlled far better and I can rest when overcome with exhaustion. I've had SLE 25years now and have certainly learned to listen to my body. I found the saying 'You can't pour from an empty cup' helpful, I've come to understand that my health comes first before all else, hope this helps X
Oh yeah! Video games are good! I'm eyeing Horizon and I also haunt Steam a lot. I indulge in horror films, audiobooks from Audible, and cook. I love cooking (when I have the energy). I also garden a lot.
The biggest thing for me is that I don't even try to stick to a routine. There will be days I can do things, and days I cannot. There is so much pressure on being 'productive' that anything that isn't work feels like a waste of time. I still struggle with this. I probably always will. But I contribute with growing and cooking food, reading and cross-stitch and sparking the Dutchman's enthusiasm for video games. It's an adjustment but once you make the mental shift that 'busy' doesn't always mean 'worthwhile' things may get easier.
Listen to books if concentration flags. Choose games you can pause when you want. Listen to podcasts. Slowly, gently experiment with new things - I started knitting a few years ago, though I can't spin wool anymore. Give yourself permission to Do Nothing. It's probably Something after all
I was diagnosed with lupus MCD in 2006 in 2007 I discovered my lungs were damaged and I could not go back to work so I applied for my pension on ill health grounds because I was told I couldn't work anymore.
When I'm feeling well and not flaring I try to visit friend and during the summer I get them to visit me and we sit in the shade in my garden. I also have two elderly friends in care homes who I try to visit as often as I can.
The church I go to, open the doors two afternoon a week for anyone to drop in and have a chat, a hot or cold drink and biscuits.
We get all age group including students. We have trained listeners who will listen to whatever you want to talk about without judging.
It is difficult for you quirky tizzy because of finance but you could try and check out your local churches and see if there is anything they do during the week or even in the evenings for young people (they would always arrange to come and collect you).
I've become a jigsaw addict. I get cheap ones from charity shops. They not only distract me from bordem but they act as physio as I use my arms and hands which can be very stiff. It also distracts me from the pain sometimes. I'm a genuine addict and if I can't get out and about because of stupid lupus at least I can be doing something at home that isn't just watching TV.
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