The bed bound days... Join me in bed :): youtu.be... - NRAS
The bed bound days... Join me in bed :)
Thought I'd wandered into a different type Of site there!!!
Just listened to your vid. Things seem pretty difficult
To you and it's clear to see the impact. I'm a mum of 4, 3 of whom are still at home and the youngest, just ten so I understand the additional stresses and the energy you have to find from somewhere to carry on and make sure you are able to meet the needs of your children.
Can I ask, do you have any support in place for you and the children?
Thanks Hun lol sounds like we are in the same boat. My mum is my only family available so no I don't get a great deal of support, my 19 year old son and 18 year old foster daughter have pretty much taken on all the responsibility that I can no longer manage and I am making arrangements for him to take care of the younger children should it become necessary. It's a lot to put on a 19 year old lad. He's done me very proud but I can sense the pressure building for him :/ I've recently asked for and finally started receiving some social care 30 minutes five days a week to help me wash and dress to take some of the more personal care off my son. As much as he loves me and wants to help me I know it's not comfortable having to help me get my bra on and off etc. when he was a young lad he used to joke how everyone knew and loved me, everywhere we went people would stop and talk to me, it used to drive him crazy...now since I got sick and haven't been able to drive or get out and about (except to hospital) I see literally no one, well there are my kids friend's, when I think back to the hundreds of times I've taken people to the hospital/school whatever or I've cleaned peoples houses and fed their families when they've been in need. I got sick and I may as well have died. No one is interested in my problems and no one has any reason to come see how I am. It's sad for sure but I've gotten used to it now. I've found ways to entertain myself and me and the kids are closer than ever. They never leave my side anymore and as the video showed my blessed cats keep me smiling even when I'm in pain <3
I'm glad to hear you've got some access to services - although 30 mins every day mprobabky isn't enough , it will as you say, relieve some of the pressures for the older. Children . Have you thought about contacting children's services to get further support for the younger children ? Although I'm back to work now, on a bad day, I'm always aware that my kids can worry about me some times. I'm fortunate in that I have a big family, great friends that are very present in the kids life and as a result they are always up to something and if I'm not able to give them all the attention the way want, they have a lot of time spent on them with others?
Some people are not in such a favourable position and children's services may be able to afford the kids support or respite?
Having said that it may be that you're happy and able with the older children to keep
Soldiering on without any outside help? Just a thought.
Mariw
That was a very powerful video. Thank you for sharing and I wish I could take your pain, both emotional and physical, away from you. People don't see the impact of RA, it's not just a disease of the joints, it is so much more. Take care.
Thank you crash doll love that name hahaha. Thank you so much tho it means a lot when people say they wish they could take the pain away. In my humble opinion it's the best thing to say to someone in pain daily. I try to remember that if it wasn't me in pain it could be someone else, maybe someone I love, if the choice be between me and those I love feeling this pain I will gladly take the pain every time. X
You're an amazing lady - was touched by your video and the message you were portraying - admire your strength even when you're going through such a difficult time. Thinking of you.
Thank you *hugs* I know you all have a deep understanding with your own experiences, I'm glad to connect with you all x
I am so sorry you are going through this and that you have the responsibility of looking after your children as well, this is hard on you and hard on them. Only one thing i could possibly suggest but not knowing how old your children are it may not be appropriate, what about supervising them and getting them to do some of the food?, i really loved doing that with my mum when she was bringing me up on her own, she said i cant teach you football or how to mend an engine but i will teach you to be the best cook i can. I cant honestly remember what age it started but by 11 i could produce a roast dinner with all the trimmings like a pro. Looking back now they were some of the most wonderful times that i had with my wonderful mum. I hope you get your house move in future and that things get easier for you.
Blessings.
Hi hun and thank you for watching and commenting 
yeah this is exactly how we've managed over the last three years. The younger two are 12 and 13 so perfect age and they've adapted well. Up till I got sick I was the kind of mum who did everything for my kids, my mum worked and I used to cook the roast and clean the house from 10+ years old so I went the opposite and did everything for my kids then when I got sick I realised I hadn't taught them anything. Even the 19 and 22 year old had never learnt to change a lightbulb or anything! It's been difficult to try to teach what I wasn't capable of completing myself. They have learnt a lot now but I still have much more I want to teach them yet
I really feel for you being in that situation, im bed bound 90% of the time but having no responsibilities at all my life is comparitively easy.
Blessings
Bless you Hun. Being bed bound sucks I wouldn't wish it on anyone. I'm sitting at being Maya Angelou at the moment, I'm sure no matter our situation (clouds) there will be rainbows for us too xx
Hi, Orchid, One of the main causes of rheumatoid arthritis is celiac disease. Have you tried a gluten-free diet to see if it would put your rheumatoid arthritis into remission?
Ann.
Yes I've tried every diet and natural and supplementation going and worked out all that suits me best alongside blood tests at the hospital to be sure what I need. Mine is definitely not caused by celiac's, though I do know people with celiac disease, they are two separate autoimmune diseases, I don't believe celiac's causes rheumatoid arthritis at all, but definitely not in my case I'm afraid. The first year, the pain was so extreme I was qilling to try every "cure" anyone on these forums mentioned. Of course there are a heck of a lot of "cures" out there for this incurable disease of mine :/ so it took some time trying them all. I don't appear to have any food allergies at all, which I guess is lucky, though it would have been nice to discover I could treat this with simply changing diet as the medication for it hasn't done me much good. But hey ho I shall keep in plodding along trying work out what the "root cause and cure" to RA really is. When I find out I'll be sure to come tell you all what I've discovered. I am glad for any celiac/ra patients who have gotten relief like this. I was under the impression celiac's could cause joint pain in much the same way as psoriasis and lupus and some other autoimmune diseases which share symptoms. I think each person with autoimmune diseases has their own selection. Some affects the gut, some endocrine system, some liver or kidneys and some lungs and heart. I have hashimotos hypothyroidism, sjogrens syndrome, rheumatoid arthritis, fibromyalgia, asthma, emphysema and rheumatoid related interstitial lung disease and crps/CFS as autoimmune diseases and carpal tunnel syndrome, osteoarthritis, scoliosis and spondylolisthesis with osteoclasts in my c5&6 and l4&5 which are not considered autoimmune diseases but do seem very much connected to the RA :/ it's pretty complex isn't it? Lol. I think each case is individual, and what works for some may not work for others. I guess we are all like little projects trying to work out what will make the difference for us. Thanks for the watch and comment
2 days in?!? Surely not.
Receiving baricitinib in 2 days
yucky day - how can you be seasick in bed ?
