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Frightened about things getting worse

I've talked before about not having any rotator cuffs left, bone eroding there and in thumbs.
I went to take a shower today and could not get my b louse off because of the pain in my shoulder. (Pardon the italics - have no idea where they came from I tried again later, being very careful. It took a long time, but was able to get it off and shower.
They are getting worse. I cannot imagine what I will do if I lose the ability to dress and undress myself and the ability to use my hands because of the thumbs.
Thank you for listening. I am quite down.
I went to take a shower today and could not get my b louse off because of the pain in my shoulder. (Pardon the italics - have no idea where they came from I tried again later, being very careful. It took a long time, but was able to get it off and shower.
They are getting worse. I cannot imagine what I will do if I lose the ability to dress and undress myself and the ability to use my hands because of the thumbs.
Thank you for listening. I am quite down.
Replies
Senior online community officer
susielockett
Scope
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susielockett
I am sorry you are struggling, I definitely understand & can relate to how you feel.
You must talk, here is a good platform, no-one will judge & nearly everyone will empathise. You can really find help here. People read what you're going through & even just saying "hello" to you can help you feel not so alone (even if we are ALL over the world).
You are not alone.
Someone on this forum will always chat.
Good luck & best wishes.
Love & Light.
Have you tried braces that clip onto your trousers and then you can use your stronger arm to pull the straps up?
Disability Gamechanger - 2019
Am - I have sweatpants mostly with elastic waistbands. I do have a couple of other pants, though, and yours is a good idea. THank you!
I know it's scary at first when you lose the ability to do the things you used to be able to do but we can reassure you that there are ways to be able to do them again
Disability Gamechanger - 2019
I have also learned to use my feet and legs, which are a lot stronger the hands.
I was just talking to myself in the shower. I told myself that part of my problem is my internal fight to be without disability instead of learning to work with it. Your words helped me focus on building strength instead of wanting to regain that which cannot be regained.
All these responses are wonderful. I cannot thank everyone enough.
In regards to reaching objects, there is an aid which looks exactly like the ones that street cleaners use to pick up litter. I call them the 'Grab Stick' lol but I'm sure there is a correct name for them. You can buy them online and they vary in lengths too!
Disability Gamechanger - 2019
Thanks for @Pippa_Scope for inviting me to join this conversation.
There are lots of ideas for dressing aids at: https://www.livingmadeeasy.org.uk/personal care/equipment-for-dressing-2580/ presumably these would all also be available in the USA if you searched online.
Potentially also worth exploring if clothing adapted specifically for your needs would make life easier (for example replacing buttons with Velcro).
Ideally, I think you need to be assessed by an Occupational Therapist who can advise on how your needs can best be addressed but I also appreciate that in American that can be expensive if it isn't covered by your medical insurance.
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist
I saw my doctor today and he did prescribe O/T for the thumbs that subluxate and a sling for the arm that dislocates. He is also sending me to get Botox, methotrexate and a back brace and braces for the thumbs.
All of this really upsets me. I apparently in worse shape than I thought. It may be possible to slow down the progression of my conditions.
I hope you re doing all right tonight.
I'm pleased to hear that you have an OT referral, I hope that proves useful for you.
I appreciate that exchanging all your current garments for ones that are easier for you would be an expensive undertaking. It is possible to adapt some button garments very cheaply if you know someone with basic sewing skills willing to help out.:
1) cut the button off 2) sew up the button hole and stitch the button over it so that it looks 'done up' 3) apply an appropriate sized pair of pieces of iron-on velcro to the rear of the buttonhole and the surface where the button was previously attached.................now the garment looks like it is closed with buttons but is actually held closed with velcro......works best for garments that are not overly tight and are made of strongish fabric
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist
Much of my problem is that most of my shirts and turtlenecks, most of my pants have elastic waists that are hard to pull up. I have no front-opening shirts of pants which are easy to pull up.
I think I will have to go on Amazon and find inexpensive garments I can manage to put take off with one hand. Even socks are difficult.
Perhaps the O/T person can help me out with this.
https://www.completecareshop.co.uk/dressing-and-comfort-aids/sock-stocking-and-tight-aids/ The OT should be able to advise on this.
Best Wishes
Jean
Jean Merrilees BSc MRCOT
You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist