New to RA

[RAstrong]

Hi there I am a 44 yr old female who has just been diagnosed with RA. I have been misdiagnosed for many years. I am having a really hard time trying to explain RA to my husband and how it's affecting me. He is a wonderful man and I know if he could just admit this instead of being in denial it would benefit us both.

[keeta]

Hi love i was misdiagnosed for years but i am soon to go onto embrel.i think over the years the family havebeen worried at times but have watched me cope as we all do so they get used to seeing good days and bad days.si they don.t worry as much and i actually think they forget what you have and treat it like we have flue.and will get over it.its hard to explain pain tiredness. And stiffness.because they can.t see it .and as i said before.we cope.

My advice is don.t cope.don.t be afraid to ask for help.if yiu don.t ask you won.t get.

Gentle hugs love .be kind to yourself.x

[RAstrong in reply to keeta]

Thank you so much for your kind words. It is quite hard to realize and come to terms with not being able to do everything I am used to and if I do do it I have to nap and rest between tasks. Today for instance my son is coming for dinner so I made potato salad well that was way to much for me to do by myself. Had to have a nap and find having at least 3 a day and it makes me feel guilty. I guess it all takes time to realize what you can and cannot handle and as the disease progresses you will again have to adapt to the change which is not an easy thing to do but I am learning. Thank you so much I hope you continue to have a great day.

[keeta in reply to RAstrong]

As i said love be kind to yourself .please don.t feel guilty. And yes explain to your family that you need to rest .far too often we push oursekves for others.take care darlin x

[farm123]

It is very hard to come to terms with for ourselves yet alone our families. It will take time for medications to work or find the right one - it sounds as if your meds are not enough at the moment. Would he come to appointments with you as sometimes that will bring it home to them. My eldest son (27) is still in denial and he has grown up with it as I was diagnosed before he was born. Farm

[RAstrong in reply to farm123]

Yes I have convinced him to come to my appointment with me on Wednesday I also found a wonderful letter online that was beautifully written and was able to change portions of it to make it my own. It was the first time I saw him cry in a long time. Yes my Son is almost 21 he knows I am sick but is in denial he says no matter what I am still his healthy mema and that's that. My son has had a rough year and a half he understands I need help and always does whatever I may need just won't admit it to himself.

[Moomin8 in reply to RAstrong]

I agree with farm: take your hubby along with you- it will help x

[Spencey]

Hi there

It is hard for people to understand I have just set up a support group for people with RA and there families I am lucky I have a brilliant husband and supportive they can only understand so much I have RA everywhere and on lots of drugs but going back to you're husband what I did to try and get my family to understand is if you live close to a beach with lots of pebbles take them there make them walk on the pebbles with no socks or shoes for 5 minutes that will hurt there feet but what you can say is that is how you're feet feel like everyday hope this helps

Take care

[keeta in reply to Spencey]

We see all sorts of written things about r/a some disagreeing with others .i would like to see a website which doesn.t pull punches and spells it out in strong terms x

[phil_54]

Hi RA strong, I was diagnosed in 2013 and i must admit it took me a while to come to terms with the condition so i fully understand how difficult it must be for non sufferers to try and understand what you are experiencing, one of the best ways is to attend appoinments along with you partner or a family member as i have always found that they can maybe ask questions that you may overlook and this really helps, i have attended previous appoinments by myself and then get asked by my wife did you ask about this and that so once you have a greater understanding then it will get easier for you and your close ones to deal with,

As for feeling guilty you need to find the right balance between overdoing and doing just enough but if you know you need to rest then just do it, I am at the point now that my wife expects me to lay down take a rest as she recognises the signs tiredness, irritability etc and she will make me have a lie down or a sleep because she knows it will benefit both of us so you have nothing to feel guilty about you have to do whats right for you this may seem a little selfish but as i say once the people closest to you fully understand the implications then it will be fine.

I wish you all the luck in the world

Cheers

[RAstrong in reply to phil_54]

Thank you so much I have been reading everyone's post to my husband and I finally think he may be coming around that I am not exaggerating the pain and yes not magic either hes I believe afraid of what may be yet to come and doesn't want to admit it. Which I do understand he lost his mother to cancer just over 1 year ago and she did not tell a soul that she had lung cancer not her Son or her Grandson we took her to hospital on a Wednesday and died Friday which was also Christmas day. It was and still is hard for him. I know he loves me and will support me fully.

[phil_54 in reply to RAstrong]

Im so sorry to hear that, thats why i follow the forum because i have learned so much more apart from visits to the ruematology at hospital, I find that it really is good to talk and sometimes outside of the family with very best intentions of course.

Unfortunatly this condition can affect the whole family in one way or another so thats why its so important to share your feelings and with the right support you will come through this just keep posting we are all here to help each other.

Cheers

[Hidden]

My heart goes out to both you and your husband. A RA diagnosis is a scary thing to deal with, so I do understand his denial. Ra is a hard thing to wrap your head around, maybe your husband can come with you to your next doctor appointment?

I wish you both well.

Sue

[RAstrong in reply to Hidden]

Suzannedale thankfully he is coming with me in the morning. Thanks so much for your support.