Hi, advice wanted please

[Suchislife]

Hello everyone. I am looking for some advice and any in put really. My mum has RA and has been diagnosed and been receiving medicine since 2005. I am not 100% of the amount of medicine she is on but I know she takes steroids, methotrexate and gets injections every few weeks there is a longer list of drugs but I am unsure of them. I can tell when she is bad and I would like to help but it's a topic that always seems to get dismissed I have been on the Internet for hours and I had joined health unlocked through the crohns part as that is what I have and I found this. I know that she seemed to be managing it better over the last wee while but recently I have noticed that she is getting very sore and unable to do thing. We used to have a large 2 acre garden which over the years we have now downsized it to a very small area and again it was mentioned to down size it again so I know that she is struggling with it but How can I help?

[Suchislife]

Thank you for taking the time to read and reply I am looking into your link now. Thank you 😀

[farm123]

She is lucky you are taking an interest as this is such a hard disease to explain to family and friends. It can be like a roller coaster from day to day when things are not very well controlled. It does sound like she is not as controlled by the drugs as she ought to be. Would she be responsive to you going with her to the next rheumy appointment so you can help understand the disease and drugs. There are various leaflets available on the NRAS website which may help and also other information about the disease and drugs available. Farm

[Suchislife in reply to farm123]

Thank you. It's something that gets pushed a side a lot and I can see her getting sore again. I know that they changed her injection from every two weeks to a month and it's had a horrid effect her hands are bad and and she is walking so slow I had demanded that she tell them this isn't work and she did go back to see them so they have been put back to fortnightly but as she has now had 4momths of basically half the medicine then it's taken its toll on her. I hope that when the medicine gets back into her system she will be able to have less pain. I will go and look into what you have said and try to go with her. Its just so sad seeing this happen. My heart goes out to everyone who has this and I can't begin to imagine what it must be like. I would just like to be able to help her and look for drug options that can keep her on a manageable level.

Thank you for taking the time to read and reply.

[nomoreheels]

Your mum is fortunate to have such a thoughtful & caring daughter. Do you think that because she's your mum she's not wanting to concern you with her troubles, that's how my mum would have coped (or not!) I'm sure. Well, previously I've recommended the spoon theory to those with the disease who are looking for a way to explain how it affects them to family & friends, particularly when not doing so well but I wonder if you could also apply it to ease your mum into talking about how she feels. Have a read & see if you think it could work in reverse, how many spoons does she think she uses in a day butyoudontlooksick.com/arti...

I also think Farm's idea could be helpful, if she would be open for you to accompany her at her next Rheumy appointment, though you may need to approach this carefully if she's being dismissive & not wanting to burden you. Also, it can be difficult when in pain to explain just how things are to our Rheumy & it does sound as though things aren't so good so she may be pleased of the support, I hope so anyway.

[Suchislife]

Ok so firstly I think I got to reading her picking up the spoons to pass to her friend could see where this was going and started crying I have managed to read it all now. I hadn't heard or seen that before but it is something that I will be passing on to my brother right now. I will approach mum cautiously. Thank you for sharing that story.

I completely agree with her not opening up or wanting to tell me if she's sore to avoid upsetting me or concerning me, to be honest I do the same with her too. I have crohns and have been in and out of hospital a lot over the years , each time she sees me and I can see her worry and hurt, one time I was in for a month and she couldn't come and visit it was too dangerous her coming to catch anything as she wasn't well at all at the time , which I understand. I now won't tell her when I am sick or on steroids so she has less stress and worry in her life, one time I had even went as far to say I was on holiday so she didn't know I was back in hospital, I worry that she is the same. And is trying to hide or mask things to try not to trouble me but the truth is I worry more as I can see her rub her hands and knees I can tell that she needs more help but I can't seem to get past the initial conversation.

From the day I found out I had looked it to RA as much as I could and I do try help but sometime I just want to lock her in a room and say we aren't leaving till you tell me how you feel. But I know that's the wrong approach, if I ask I get "oh I'm fine" or "it's ok today"

When really it isn't and I can see it isn't, maybe we are both to stubborn and don't want the other to worry but I just need to find the best way in and that I guess is what I need the help with.

The spoon theory is great and that will be tried out very soon.

Thank you so much, I'm so sorry you have to contend with this and I wish you all the best. Thank you for taking the time to read and reply as I know what you have sent will be passed on to my brother and it might open his eyes he just says mum said she's fine so she's fine when really he's a dick and doesn't see it in her eyes.

Thank you so much it is greatly appreciated

[nomoreheels in reply to Suchislife]

So you're as bad lol! Time to spend some mum & daughter time, be honest with one another. I'm sorry spoons upset you, that wasn't the intention but maybe you recognised your limitations too, that at times It can be hard when you have a chronic condition. Keep posting & reading, bear in mind though the majority who seek help are struggling though there are some of us who choose to be here. I'm one of the more fortunate ones but typically the disease chops & changes, I've needed help myself at times & received it in bucketfuls, that's the beauty of the site, we all understand & care.

[Sheila_G]

You are already helping by being aware and sympathetic to your mum's health. You are obviously not in great health yourself with the crohn's but it would be helpful if you do some household chores together. It is much easier to change a bed e.g. if there are 2 of you doing it. Maybe you could help to rearrange the kitchen cupboards so that the most used items are at an easier level. Sometimes just having someone who understands and wants to help is a great help in itself. Ask your mum what she finds difficult and discuss ways of changing things. You will both come up with different ideas and together you will be amazed at the simple changes you can make that make your life so much easier. That is what my husband and I do. I don't know what I would have done without him. I hope this is helpful.