Rough!

[Crazyjo]

Feeling really rough and low today. Find these days really hard especially when family don't seen to understand how crap I feel

[cathie]

This is a case of where we really are all in it together. It took me an hour to get dressed yesterday, today I'm up and functioning already. Its a roller coaster isn't it. Have you answered the NRAS questionnaire on fatigue? I found the questions made me think quite a lot about this. I can get used to having to pace myself most of the time, its the days when I feel crap, its best to go with it and find something to do that allows me to flop.

Family not understanding is another issue. Do you take them to rheumy appointments? that can make them realise how serious this is. My burden is my dear partner encouraging me to go out for a walk/drive when the sun is shining and I just want to curl up. That's a difficult lone because often I do feel better after having made the effort to go out (not much more). I hope you feel better later and can have some sort of treat to cheer you up a bit.

[Crazyjo in reply to cathie]

My poor folks are already disabled and don't have other family, so difficult for them to come to appointments with, just one of the days I think where waiting to have a steroid infusion tomorrow and feeling rough whilst waiting x

[Hidden in reply to Crazyjo]

Hi Crazyjo, I'm so sorry you feel so bad.

I know the feeling about parents not fully understanding how you feel. I take care of both parents on a daily basis. I bring their medication, clean up some, take my dad on his doctors Appts. They call and want something from the store and they want it now! It's good you have a dog, it make you get up. I have a parrot and she makes me get up. Just rest till tomorrow. You will have the infusion. I do hope you feel better! XXX

[allanah]

Hiya sweetie, one more sleep only. And you can bet tomorrow when u r going to the hospital you feel do much better lol?

My Rheumy nurse spoke to my kids and husband about how it feels during a visit and then they seemed to understand better. Also I got out my NRAS leaflets on fatigue, just diagnosed and left them around the house .. Toilets

to be precise! Sorry NRAS lol but they read them cos they started asking questions and taking more notice of how I was.

Are you actually telling them too or just doing the acting we all do in saying I'm fine when you're not?

I hope tomorrow brings on a better time for you, you deserve it x

[Crazyjo in reply to allanah]

Hi I am telling them but don't think they understand how bad I feel. I normally go to appoints on my own as my parents both disabled themselves and single with no kids. Would love to just slip off to bed but my dog is wanting his mum all the time so cries if I not around bless him. Just hate it when feel rough on top of the pain x

[cathie in reply to Crazyjo]

That's not easy is it. I think the idea of info being left around is a good one. We have the NRAS magazine in the loo. It sounds perhaps as though you could do with a supportive counsellor. Someone who says to you, now what are the boundaries you need for yourself? Your parents may have their own problems but you also must have some space. I wouldn't want to go to a support group particularly, but when I did painting classes I found several people in a similar situation to myself and that was a support. If of course you have time.

Hugs, C

[allanah in reply to Crazyjo]

Oh Jo I apologise you did tell me before. I agree with Cathie though that ok they have disabilities , have they as them a long time, this might sound curt but then they have had a little more time to adjust than you have. You are right at the beginning of your journey and maybe you just have to be a little selfish for once my love and you and dog go for a rest together.

Do you live in Britain, I don't know what you think of this idea but social services are amazing. When I got I'll I was my elderly Alzheimer's disease mum in laws carer. I did everything for her, then I couldn't. I called social services, she got the loveliest social worker who got her a home help once a day! It saved me trying to peel myself out of bed in the morning to see to her, and we get on so much better now I have time to do things to help me get better and when I go in for my infusions she is always concerned, before she would only worry what she would do.

Really thinking of you, I did get a counsellor after diagnosis and I can only say it was one of the best things, really helped me come o terms with my illness and how it affects everyone lose.

Hugs xox good luck tomorrow xx

[Crazyjo in reply to allanah]

I don't have to do anything for my folks luckily, just live with them in uk. They are sort of understanding just not of how bad and tired you can feel. I just feel bad if keep moaning when they are in pain to and as they have different things went they don't understand the fatigue and how you can be good one day then down so much the next. Do get what your saying thou x

[allanah in reply to Crazyjo]

Ye I think it is hard to understand this awful invisible illness and nras are doing an awareness campaign soon just for this reason. I must admit that before I got RA I had little understanding of just how bad it makes you feel, how tired and sore, this is unbelievable as my dad eight uncles gran great gran and two cousins have it! And I still got a shock!

Your parents love you and I would be surprised if they got fed up of you" moaning" it's not moaning it's just expressing how you feel. I would chat with the GP though as I did get to feel like that and it got easier to talk to someone outside the family, a counsellor, nras helpline or us lot , xxx

[Crazyjo in reply to allanah]

Thanks allanah, it talks to help to you all on here as everyone understands where your coming from. Early to bed for me now as shattered, roll on tomorrow lunchtime for steroid infusion x

[allanah in reply to Crazyjo]

Mine have always been marvellous but I hope this one has that effect on you. Hope you manage to rest and in 24/48 hrs you are so much happier xx

[Bazzypants]

Hi jo, feeling rubbish today also my knees feel real bad and I have felt real cold even thou the sun is shining. As for the family I get where your coming from my daughter just came home she has been at her boyfriends for a few days she walked in and said " alright mum how you feeling" I started to tell her and I am sure I saw her eyes roll as if to say here we go again. They just don't get it sometimes. Hope your feeling a bit brighter as the day has gone on I am already in my pjs and have got to admit I would happily go to bed lol xxxxx hope you have a better eve.xxxx

[allanah in reply to Bazzypants]

Hope you have a better evening too Bazzy xx

[Crazyjo in reply to Bazzypants]

I off to bed soon too, hope your feeling better soon bazzypants x