I am beginning to see what a rollercoaster ride RA can be. Up one day down the next. Looks like the time has come for me to begin sharing the bad as well the better times. Thats hard as I have always been someone who just gets on with life whatever the problem. I'm sure there are lots of you who are just the same too.
I live alone..(well my two cats put up with me, but you know what I mean) and have done for many years. Not a problem, until now. Now I find myself wondering how on earth I am going to deal with things as RA develops. I currently live on the fourth floor of a small block of flats....there is no lift. I have been on a waiting list for supported accommodation for just over a year now due to my heart problem but in their wisdom those who assess decided I wasn't priority. I have now informed them of my RA diagnosis, but as yet have received no response to my request to be reassessed.
If/when I do get to move, how can I move? I have one brother and he lives in Canada and is unwell himself. I can't pack and move things.
What happens when I can't get down these stairs? I can at the moment, but there are days when when I wont even contemplate it. Other things like shopping for food, paying my bills (though some I can pay online). I see some huge hurdles ahead and honestly, its really scary.
I have always been an independent person, and want to continue to be for as long as possible. But it is becoming quite evident that there are going to be increasing times when I cant be, and that I will need some help.
I probably just need to get my act together and start looking at ways to solve these problems and the others that keep buzzing through my head, I know. And maybe today is just one of those down days.
Thank you for listening , and please everyone take care now. X
Written by
linbin
To view profiles and participate in discussions please or .
8 Replies
•
Lin bin my hear is with you, I live on my own with two cats too, I am sorry to hear you have a heart problem too. Do you have parents or friends who can help at all?. Ra can be well contriolled with the right medication(diffferent medication helps/ suits different people).Try not to look for problems if you can do the stairs noe then that is good.
Removal companies can apck for you but they will charge for the service. I Just put clothes into black bin bags etc. some companies will also transport drawers full of clothes etc.
I have used on line more,, but I still like to chose my own food.
I had sixteen good months on my last medication and a lot of people do a lot better than that and for a lot longer.
Contact NRAS helpline tey are do helpful and will try to ease your fears
mm sorry should say heart.. rather than hear.. valentines day??!!. my fingers/ brain!!
As Summer says the worst stage for many of us is at the start so please don't worry too much as many find the medication works very well once we get the right ones for us. I'm where Summer was when things worked well for her - its been just over a year since I had a really bad flare and 9 months or so since RA really showed itself. I'm on two drugs, MTX and Hydroxy and presently having a week off them so my immune system can fight a heavy cold. No flare ups yet - find myself wondering if its all gone away - that's how well controlled my RA is now. You can't live your life in fear of the what ifs. RA forces us to live in the present more because its such a variable disease.
Having said that I think it would be good to be located on a ground floor if possible - although exercise is a very good way of keeping the arthritis away and also good for the heart so I wouldn't worry too much about that side of things until you have to. But that's easy to say for me with a husband and sons and two dogs at home. On the other hand I live on the side of a very steep hill and we have a lot of stairs. When it snows we can't get up or down easily so at first, after diagnosis, I did think we might have to move somewhere on the flat but its certainly not an issue for me just now - I'm even doing Zumba on my Nintendo Wii! Lovely cats but unfortunately I'm allergic so have labradoodles (non allergic) instead. Tilda x
I really understand what you mean about being independent, I haven't worked now for 7 months and some days had to rely on my family to help me, So i really feel for you having to live alone, But you have now got new friends who will try to support you and give you great advice, feel free at anytime to chat to us, and remember we are all going though the same andreally understand, before i joined this site i was asking myself the same questions and getting really depressed, it has really helped me to relies that i am not the only one and that there is some great meds out there that will help us, we just need to be patient, I look forward to hearing more from you, Take Care, I also love Cats, but lost mine a few years ago, so we have a dog called bobby now, He seems to be the boss sometimes Xx
Thank you for your responses summer, tilda and shirl. I do take exercise (walking) when my poor old tootsies aren't on fire or don't feel like they are walking on rocks. Hehe. But the stairs have been an issue even before diagnosis of RA. I'm amazed at how painful it is to walk down sometimes. I would have expected it walking up.
I am certain as you say that once I start the right meds, rather than this meds to 'tide me over' period, things hopefully will improve.
I guess today I just needed to voice a few things....moany old thing I am. Both my parents have passed on now and I confess to being something of a hermit....so really it is just me...well and the cats...who I wouldn't swap for anything. I will perhaps give NRAS a call. Thank you all for your kind words and sound advice. Please take care everyone.
Hi Linbin, I can understand your worries.I had an occupational therapist visit me and she arranged with my council to fit a stairlift,wetroom,rails etc.Maybe you could get help from someone like this although I would have thought they should have moved you to a ground floor property.I don't live alone as my husband is my carer,we have 3 indoor cats and 2 dogs,also a horse but she doesn't live here she is stabled nearby and looked after by someone.I couldn't live without my animals,they mean the world to me and cheer me up when I'm feeling down. I hope you get the help and support you need.xx
I am sorry you are struggling just now but as everyone else had said maybe once you get the correct meds for the RA and they kick in things will get better.
As you also have a heart problem then things must be really tough for you.
I hope they sort out the housing for you soon and I think with things like this you have to keep pestering the people at the housing until you get what you want, even if this means going to your local MP to get them to help.
I have had RA for 5 years and at first I found things almost impossible to do. I could hardly walk and lost most of the power from my hands but once the MTX kicked in things gradually got better. Then any time things got bad my Rheumy doc added Supha then Hydroxy for me to take along with the MTX.
You are right when you say things go up and down with RA as that is the way I have found my 5 years but up until recently with having chest problems things have been quite good for me.
I have a husband who does all the shopping and cleaning of the house as he is recently retired and I still work full time but without him I don't know how I would manage.
The last twice I have moved I have found that paying that bit extra for packing and unpacking by the removals company is worth it's weight in gold. It reduces the stress enormously (I've had lots of practice moving).
But you need to start sorting your things out now. The sooner the better. Getting rid of things that you don't use or wear. Get it down to a reasonable amount gradually (I said gradually and I meant gradually, so you are not stressed about it) so that when you know where you are moving to and what you will need there, you have much less sorting out to do.
best of luck with being found somewhere more suitable.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
but you know what I mean) and have done for many years. Not a problem, until now. Now I find myself wondering how on earth I am going to deal with things as RA develops. I currently live on the fourth floor of a small block of flats....there is no lift. I have been on a waiting list for supported accommodation for just over a year now due to my heart problem but in their wisdom those who assess decided I wasn't priority. I have now informed them of my RA diagnosis, but as yet have received no response to my request to be reassessed. 
My swollen collapsing knee ... is it OA or RA?
Cure for RA........
Achilles pain - still suffering
Remission/Acceptable??
As bad as it gets ?
