How is your OH coping?

[Wilroda]

Hi all... just need to sound off a bit and you are all such good listeners (readers!) So here goes...

I have had R A for years ( long story) but only in the past year have i been on any treatment. Now on MTX 25mg injections and hydroxychloroquine which does appear to make me very weary. I am still working part time but am about to reduce the hours i work in the day to give my poor feet some rest.

I am wondering how your other halves manage with your condition. Mine is very sympathetic when he can see that i have real problems but as soon as there is a hint of improvement he is back to his old ways...."where's my tea" "whens dinner" etc etc

We have talked about the R A and he does understand but as is the case with this ruddy illness you cant always see it and maybe he forgets...

We are very close... dont get me wrong but if only he was more supportive more of the time things would be better.

How do your OH manage?

[Amy_Lee]

Hi Wilroda,

I do agree we need a lot of support especially from the family. I was all alone for 3 weeks when I collapsed on bed. I am a single mother hence I could not expect much because I was all alone. I was again fortunate that my daughter happened to come home after that and took good care of me for 10 months before she started to work.

When I was alone, my colleagues and friends sent me food which I could hardly ate. I knew I needed to live on hence I could only manage to eat the plain bread on the table. I could not even made a cup of tea for myself. Oh!! Those were the days. I am now in remission so I am working on the natural way to keep myself to continue the remission until I am off the medication one day.

Try to make him read more materials of RA so that he can understand you better, I hope so.

[sylvi]

Mine i have to say is brilliant,he does everything for me.The one thing he forgets to do is to spend time with me.xxxx

[popsmith1874]

Hi well my wife is also very supportive but they don't fully understand how serious the disease is and I think most folk are like that because before I had this disease I just thought arthritis was just a part off old age, how wrong I was and its the same with most people who you meet when your down the street shopping. They will ask you how your keeping and if you say your not well then you get a comment like oh my knees sore or another part off their bodies sore and then I just say , well I wish that was all that was wrong with me and they just clamp up or change the subject

[Hidden]

Sounds like you and he are halfway there ..... I think you're going to have to gradually get him in the picture a little bit more. There's this 'spoon theory' thing .... I've never liked it that much but I've come round to the idea that it does help to convey the fatigue and nagging pain side of these diseases. When my adult son asked me 'have you got enough spoons left?' when we were planning a day out I realised how useful it can be.

If you google 'spoon theory' you might get to the original blog that coined the phrase or at least a summary. I'm going to try that now myself.

[EmmaS-NRAS NRAS]

Hi Wilroda,

Lots of lovely replies already to your post but I thought the following links might be helpful both for you and your husband. Being diagnosed with long-term condition can be very stressful on both the patient and family members and often the emotional impact is not something that gets addressed. NRAS created the 'emotions, relationships & sexuality' booklet and lots of other reading material which can be found here: nras.org.uk/emotions-relati...

They also created a report following the 'Family Matters Survey' which might also be helpful to read. nras.org.uk/family-matters-...

Hope that helps and do call the NRAS Helpline if you need to talk anything through (0800 298 7650).

Kind regards

Emma

[Jeanne2016]

Thank you for this helpful thread. If all else fails frozen mashed potato is an alternative. Morrisons do a large bag for £1. just pop in microwave and season or add little butter, my family can't tell the difference. I sometimes add frozen mashed butternut squash, sweet potato, carrot etc, makes a nice change and the carrot and swede one makes it less fattening. Hope this is helpful, no peeling anymore either. This is my first post. Good luck to you all.

[Wilroda]

Thank you all for your comments. I do like the spoon theory as a means of letting my OH know how i feel... then maybe he will understand things a little better.

[marie66]

We're still in a transition period just now, I was diagnosed in March and I'm my husbands carer as he has disabilities too! I think it's been easier for him to understand as its a hidden disability he has - Epilepsy - so I suppose we now are kinda caring more for each other. M x

[Sheila_G]

I am so pleased to be given the opportunity to sing my husband's praises without instigating it myself. My hubby is the most supportive, understanding, sympathetic and caring man you could wish to meet. If I have a flare he does everything for me. If I haven't got a flare he doesn't want me to do anything overtaxing in case it starts off a flare. I have to remind him sometime that I can do things for myself but he doesn't like to see me in pain because he can't do anything for me. I could go on forever about him but I am sure you wouldn't want me to. We have just celebrated our 35th wedding anniversary and he has never changed. He is one in a million.

[Wilroda in reply to Sheila_G]

Oooh sheila-g you are so so lucky! I wish mine was like yours! Xx