My first post. I have RD and severe knee osteo. Surgeon states he will not operate unless the pain becomes excruciating. I'm 54, single, self-supporting. I'm on biologics, had a very recent fail on Remicade soon switching to Orencia. I also take methotrexate. I attempt to manage my pain with anti-inflammatories. I walk with a cane. The reason I'm switching to Orencia is due to frequent flares where a short tapering course of prednisone is prescribed. Touring these flares my niece the bone on bone get attacked they get very swollen and sore and I limp. Along with this is a debilitating fatigue and brain fog. As a crisis counsellor in a women's shelter you can imagine how none of this is very helpful in serving my clients. My question is how do you manage to do any of your house work and shopping? Particularly the single women, those who live alone. I don't have a lot of close friends and I have no children. I'm feeling quite alone in this and I've gotten very behind in my house work. Just wondering how people manage it with the pain?
RD, knee osteo, and daily living when one lives alone - NRAS
RD, knee osteo, and daily living when one lives alone
Can you apply for PIP to pay for a cleaner? I empathise as it saps your spirit to live in a mess.
In Canada, will have to save up to get someone in for a deep clean for sure. Thanks helix
Ah....Are there any local volunteer groups? Yes, usually for older people but also for people with diseases. Or any exchange schemes, where you swap something you can do (baby sitting, knitting, etc) for something you can’t? I can imagine it’s hard living alone with this, so bluntly speaking you need to start researching options now and for the future.
I will do my research! Many thanks for listening
I order my shopping online and the company I use (ocado) helpfully pack frozen & fridge items separately so I can just put that away on the night (they take it to the kitchen and I put a chair in front of the fridge so I can sit down in between as my legs are permanently bent & I can't stand for very long. Other than that you need a cleaner or everything possible to make cleaning easy. If I need to scrub I use my electric toothbrush with an old head on. Hope that gives you ideas. If there's a specific thing you're struggling with please let us know.
These are great practical ideas and I'm going to implement them ASAP, thank you
Apparently Sobeys in Canada bought rights to Ocado's software in 2018 - I don't know if that helps you. If you can still get around here in the UK you can ask stores for "assisted" shopping and they'll get you the level of help you need in store. You could also ask them to pack it up so fridge and frozen are separate - that helps a lot.
Great info, I will check this out!
Hiya Carolyne, welcome. I'm afraid I can't help specifically with your question with being in the UK but we do have some members in Canada so hopefully if they see your post they'll be along to welcome you too &, if they can, recommend possible options for you. Generally though, would you be able to use a lightweight vacuum cleaner? A while ago I changed to a battery operated one (Gtech, gtech.co.uk/cordless-vacuum... I don't know if you have something similar there? I have two dogs who shed but this has made such a difference in keeping my carpets hair free. Being lightweight it takes no strength pushing it & is easy to empty with rubbish hands. My h does the dusting, things stay intact that way, so I can't suggest anything there I’m afraid, unless as helix says there are any volunteer or exchange schemes, or you have the wherewithal to pay for someone. It doesn’t have to be on a regular basis, just when you think it's needed.
I hope you don't have a long wait until you have your knee op. When you do it might be an idea to investigate hiring a knee walker/scooter. Others here have done so & found it so helpful.
I also hope you enjoy being here. It helps to be in contact with other with RD, even if we're not in the same country we can still support & share tips & experiences with each other! 😊
Many thanks heels, the knee scooter I'll look into. My knees are a mess and I can't stand very long. Lots of good ideas here. I've been reading posters, replying at times, for 2 years, great community and very knowledgeable ☺️
Hello Carolyne, just wondered if there are any voluntary groups who may either take you shopping or assist with shopping in Canada? I have a small mobility scooter, which can be folded up and put into a car if needed which I use when things are bad with my legs/ knees. Also each house I have lived in since my diagnosis I have sort of done an 'assessment' on it and sought out things which may help me in my daily living. I have a light weight cordless vaccum cleaner, light weight iron, various gadgets to help with cleaning, but mainly I try not to stress over things I cannot do. Also over here we have something which I think most councils run and where I live it's called the Safe Trader scheme, where you can view a list of services such as gardeners, plumbers, handy person who have registered with the council and provide services not only for the elderly but people like myself who is not able to do certain tasks these days. Do you have an occupational therapist who may be in touch with services you could access or gadgets to help. I know how hard things get and for someone like me who always liked things spick and span I have had to learn that I can't do everything on my own and I try and pace myself and have had to accept that some days I cannot do things and need to rest and that is tough when you are on your own. Again having a demanding job and trying to balance this with home life requires even more pacing and planning day to day. Take care and hope there are some services in your locality that can help or support you.
Thank you so much, good info and thanks for listening
CarolyneJA I feel for you. I have OA bad in knees and then RA with lots of fatigue brain fog nausea and now cough and short of breath and same age. Food shopping over in UK we have the delights of online food shops with delivery, so I do this now and very rarely do a full shop as it is too much. Yes I am married but I actally get what we need rather than- throw what I would love in basket (hubby style). Housework is almost no no or I do 15mins bouts but I now deem either a cleaner or ignore apart from bathroom and kitchen.
I am meant to be doing 4 days a week rather than 5 but lucky if I can cope with 2 at the moment as I am not in remission.
Find what works for you and it will be trail and error and remember to REST¬x
Thank you Deeb for your support❤️
Hi Caroline, firstly well done keeping going with your job when this must be so hard. I too live alone ( York, UK) and I find breaking large jobs down into small doable tasks helps. Even if it’s just dusting then at least I feel I’ve achieved something. And, my standards have had to change, clean yes but everything always neat and tidy, no.
If you work supporting others then maybe colleagues at work could offer you some support? Maybe a chat with your manager in case they can put something in place ?
Everyone has offered such good ideas already on here and I really hope something can help you.
We’re always here if you need to vent! Be kind to yourself and let us know how you get on.
Lx
You know what just listening helps
Awesome ideas many thanks. Thank you for the support
Och Carolyn, that's awful. Our waiting list is so long on NHS that it took nearly 24 months to get a knee replacement and by that time I was struggling on two crutches and was having problems at work and life was a big long pain so try to be as assertive as possible and insist you get the knee replacement asap. I have got two daughters who are a great help with housework I wasted quite a bit of money trying some different contraptions e.g a swirley mop which were good but filling a bucket with water was impossible. Would you be able to get someone in for even a few hours each week, at least that would keep on top of stuff.
Yes, thank you for sharing. I really need to get some hired help in here.
carolyne, i empathize. do you like this doctor, have you looked into others? i’m in similar straits, in US, a bit younger but sometimes a better doctor (have had to change docs w employers insurance) has had the most to do with my changes in perspective and mental health, feeling like things can become manageable. sometimes the better doctor has better resources/suggestions to offer both from pain management to lifestyle. also from practical standpoint what works for me is to do harder physical tasks in the morning when i have more energy and use some small forms of caffeine in the afternoon when i hit the worst of fatigue to motivate for short bursts (if you can tolerate caffeine, i know many can’t!). best of luck i hope you feel better soon.
Thank you. Excellent suggestions. In the morning I'm stiff as my knees are bone on bone. By the afternoon my whole body is aching. My sweet spot seems to be around 11:00 a.m..
Rock bottom: any ideas?
Feeling a little deflated
Is it time to try a new med?
Prednisone taper pack and flares
First Biologic
