Getting in my own way (i.e., it's ok to get help) - LUPUS UK

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Getting in my own way (i.e., it's ok to get help)

Silvergilt profile image
8 Replies

Hi everyone, long time no post! I was going through a bit of a difficult time toward the end of the year, and I'm starting to clamber out of it, but it's been good on the whole. I have tried to soldier on and ignore my challenges and difficulties, assuming just being stubborn and refusing to make life ‘all about my illness’ would help.

I’ve been an idiot, really.

The thing about trying to pretend that illness or disability doesn’t have an effect life is, at least in my experience, I’ve made life a lot harder on myself. I can’t walk around much, so rather than look at some mobility options, I stopped going out entirely. I stopped baking because the hand-mixer hurts my hand to hold and fight with, telling myself I didn’t really need baked goods anyway. I pushed things I dropped on the floor into the corners of my house because I couldn’t reach down and pick them up. And my brand new floor in my brand new kitchen looks terrible, because I don’t have the energy to fight a broom or a mop across it at the end of the day. I can't get in and out of my bath without pain, so I don't bathe often, and I don't have the energy to wash or brush my hair so it's a nest of tangles. I won't even talk about the toilet issues, you don't want to now, but they're there.

Essentially, on a mission to refuse to acknowledge the changes illness has enforced upon me this year, I stopped doing…well, nearly everything. And that’s no way to be.

So, I decided instead to look at my challenges and illness head on. It wasn’t a fun experience. No one likes to stare at their limitations and shortcomings, but it was an important thing for me to do. When I confronted what I currently struggled with, I was able to find solutions. For example, I now have in-house shoes with outdoor soles, plantar fasciitis insoles inside the shoes (turns out I shouldn’t be walking barefoot, ever - hence why pain has been increasing so exponentially). Long-reach grabber tools now help me pick up all those objects which have been on my floor for months. I’ve got zipper aids for my boots, long shoehorns on the way to help me get my shoes on, sock aids to help me put on my socks, extended reach devices of various varieties - one of which I hope will help me sink the pegs and membrane into my front garden. I’ve got a steam mop to save me some of the trouble of mopping up in the kitchen, and a robotic mop to help with daily cleaning up in the kitchen to keep the mopping chore to a minimum. I’ve got my eye out for more lightweight hoovers than the one I currently have as well.

I’m going to wait till the January sales and invest in a Kitchenmaid mixer. They’re pricey, but they are very much worth it, and if I can start baking again, even better. The couch I currently have has been slowly making my joint pain worse over time, and the council OT (who is currently helping to re-design my bathroom so it is more accessible - the toilet alone costs a fortune) saw how much I struggled, and is ordering a rise-recliner chair for me. I’m reviewing my scooter requirements as I’m finding a powered wheelchair is actually lot better for me when I’m out and about, but Shopmobility is an amazing charity which allows you to rent mobility aids for outings, and I think I’ll sign up.

All in all, I feel a bit stupid - while I was trying to fight the ‘looking disabled’ stigmas, or tell myself that I could just power through with bloodymindedness, I instead made life less enjoyable. I can’t believe how much easier mopping a floor is with a steam mop, seriously. I’ve got tools which help me get gardening jobs done with ease, and I’m mounting more and more things in raised beds, all with a lot less bending down. The shoes I’m wearing are amazingly comfortable and for the first time in months, I’m standing for longer than five minutes before the agony kicks in. I still don't get pain medication but I find with more help with simple tasks round the house means I am in nowhere near as much pain.

This year has been a learning curve for me; a time of abundance of which I am very grateful for as so much work has been done on my house and my health, I’m in a much better space than I was last year. My Yul was a time of being grateful for all these things, as well as learning to adapt and accept, rather than be stubborn and hope for a miracle. May the new year bring us all health, hope and ways to make life more about the LIVING part.

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Silvergilt profile image
Silvergilt
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8 Replies
littleeffie profile image
littleeffie

Acceptance is the first step to overcoming.

So happy you are on the right route now onwards and upwards.

Wishing you a wonderful 2016

Silvergilt profile image
Silvergilt in reply tolittleeffie

Thank you very much, and I wish you well in the coming year.

EOLHPC profile image
EOLHPC

GREAT POST Silvergilt! 👏👏👏👏 Many thanks: HUGELY inspiring. 🌟 FULL of good sound common sense, realism, resourcefulness and positivity. You inspire me. 👍👌

XO🎄🍀 coco

Silvergilt profile image
Silvergilt in reply toEOLHPC

Thank you very much - to be honest I was being a stubborn moo for months, this is the post about the space after all the grumbling, grousing and tears (of which there was plenty)! I'm also lucky to be able to afford buying all the stuff I need (none of which is cheap) so I can get things done, and I have an OT who I think is married to the finance head of department to the council so she is fighting my corner hehehe. I imagine the 'discussions' that must be happening there....

Roll on New Year!

EOLHPC profile image
EOLHPC in reply toSilvergilt

I can definitely to relate to all this! Not meaning to sound cliched...but I think your self awareness is terrific...and: don't we all tend to go through these phases when coming to terms with our stuff? It's great you're making the most of any contacts you've got! 👏👏🎄🎄 XO

magSLE profile image
magSLE

Thanks for sharing the changes you've made to adapt so you maintain a familiar quality of life. I've decided to do what I need to so I maintain good health. I can't be bothered to explain the same things to my loved ones repeatedly so I've learned to just get on with things whilst I can. Merry Xmas & best wishes for 2016 x

What-up profile image
What-up

Great job! The worst thing we can do is to give up. I'm not saying we shouldn't have bad days where we are on our pity parties. However, we must not party too much! 🙌

Silvergilt profile image
Silvergilt in reply toWhat-up

Thanks very much - I've actually just put down the deposit on a new powerchair from Motability and now going to get the car and hoist to go with it so I can get around a lot more. I'm actually really looking forward to it!

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