Help, I'm about to go down for murder anytime soon! Does anyone else have problems explaining why I can do one thing but not another? The main culprit? My OH. Apparently because I help a lady with her horses three days a week I'm ok to do a paid job. I am so cross to the point I've ignored him! Luckily for him he's a long distance lorry driver! I've tried explaining that with the horses I can take my time, it doesn't matter if I don't do my best as long as the animals are fed watered and are comfortable, the owner isn't even bothered if I spend most of the day sat in her kitchen drinking tea! He just doesn't see the benefits to me. 1. Yes I still ride, but I bet I'd be a lot worse if I didn't, even on a bad day I can get on, they are my legs for an hour or so. 2. Riding is actually a good form of exercise for the likes of us as it builds muscle, that in turn helps support the joints. 3. The two I ride know. They know when I'm having a bad day, or a good day and they'll either be on their best behaviour or know we can have a bit of fun. And lastly, it's good for my head. They keep me going, and so far have stopped me from throttling him so I think he'd best start liking them! I tried explaining that an employer would expect me to do the job properly, even when I can't, because I'm getting paid for it. He even said that volunteering for a local counselling charity wasn't good enough because how could I help others when I need help myself? Hypocritical right?? I would like to point out that in the for years I've been with him this is the first time he's been so pig headed about it, I've had the odd good natured sarcastic comment, my step dad calls me crip! But this jibe really got to me. I'm 34. It's hard enough for me given that before this I used to pride myself on the fact I rarely got ill. My horses are my sanity, they keep me grounded and yes I probably could work, but if I did I wouldn't be fit for much else. I'm sorry to have a rant but I needed to or he wouldn't be here at weekend! Ha!
Other people.....: Help, I'm about to go down for... - NRAS
Other people.....
Hi does this guy understand the therapeutic gift horses have and the mobility they give.
Couldn't see an employer letting you take a horse to work!!
Just being with animals is calming they know more than humans know ...about illness
Carry on Id love to be around horses . take your friend to see the horses and ride ..may be a jealousy thing/ doesn't like or understand them..
Take care
I think it's impossible for anyone to understand who doesn't have an autoimmune disease themselves. It's not just the long term nature of it - it's the fear of the destruction these kind of diseases can wreak on our bodies. This in turn impacts on our minds so it's all a vicious circle. Even fellow RA sufferers can turn on each other occasionally - comparing the severity of theirs with yours. I once mentioned going to a weekly Zumba class here (not this year mind!) and got rounded on by a pair no longer on this site. I responded by saying that two people with Lupus and one with MS had recommended it to me. As it happens my RA is much more similar to Lupus and MS than to classic RA although this is still my official diagnosis.
Anything that makes us feel better about the world, keeps us moving, brings us wellbeing is good (unless it's alcoholic or smoking!) so ignore your OH - or write this down in big print for him and be out next time he's back. He probably just resents being the earner and dwells on it while driving long distances. Then takes it out on you because he thinks you are having the life of Riley - which of course you are not - just trying to keep your mind and body above water! But if you can't resolve this by having a really good conversation about it with him - telling him how you feel.
Then write it all down as calmly and non confrontationally as you can and email it to him so he can think on this while he's on his own driving. a list of benefits of riding versus pitfalls of paid work type of thing?
Hope this helps. You aren't alone.
Twitchy
Your lucky you can ride. I have a 4 year old horse that was broken in just as i was diagnosed guess what my hips are so bad i cant even get on let alone ride. Now i have a horse i spent thousands on and then spent more on having trained and now cant ride 😢
im sorry to hear your not getting the support you require, it's a pity he's not at home more often as then he'd see the effects more often.
I've only just said to my hubby that I think I'm on a go slow today, he responded thought you were. At this time of day I'm not dressed, no breakfast dishes washed up nor bed made, just sitting looking at different things on my iPad. Hubby has come to realise when I pull a book or iPad out after breakfast then that's it for the day. Will gradually do things over time. I count myself lucky as we're both retired and can do things when I'm able, plus hubby sees the good and bad days at close quarters.
I really feel for you youngsters that don't get that, as it's what makes life worth living. I agree with Twitchytoes write it down from your perspective even show hm what you've said today and let him read our comments, maybe then he will get a better understanding of what your going through. Take care and hope today is a better day.
There's a lot of people out there that think like that,even trying to explain to people what's wrong with you,
Check out the "spoon theory" from butyoudontlooksick.com - it's an excellent way of explaining just that
Please show him all these comments!!!! Best wishes x
well have determination and a positive attitude ,I struggle to get in and out of the car and as for steps it a no for me other people I know still think my condition is me making my self a victim they are sad and unhappy with there own life ,
That's another thing I get told, and mot just from my OH. I needed to stop the self pity. I feel like screaming at them! It's not self pity its the way my life is! I just tell myself it's not their fault ignorance reigns....😊
The way that RA varies, not just from day to day, but even during the day, is very difficult to explain to other people. The spoons explanation is one good way as already mentioned.
But actually explaining that it is variable and saying how you feel when you feel it - the better times as well as the bad times, helps someone you are living with to understand. You need to say to him what you have said to us.
I know I have this tendency to hide away, not saying anything when I'm bad, so that people in general think I am coping much better than I actually am. But if we don't tell people, they don't know, they aren't mind-readers, however much we would like them to be and notice when we grimace and wince. Just stating "This is a painful morning" or "This is a much more comfortable afternoon" , "I'm doing badly today", "I'm doing well today" or similar observations helps your partner to know how you feel.
Hope that helps!
Interesting thread. I've not been diagnosed as yet, but I have some kind of autoimmune disease going on but don't know which one. Some days I can get all my housework done, do my chores and get on with my job - I'm lucky in that I can work from home when I'm really bad (my boss at the moment is very understanding and I hope that continues) and not do the 1 hour round trip. But then some days I can barely walk, I feel so tired just sitting is exhausting and my hands are like claws so I can't type (I do a lot of computer work). I know I wouldn't be able to do a normal job - in what normal job can I just say "I feel absolutely crap this afternoon and need to lie down." or "Sorry I can't come in again today I can't walk" especially when the day before I was hanging out washing, hoovering etc... I can feel okay in a morning and by 4pm be in bed and vice versa... So yes, I understand why you can't get a job and your husband should as well. And keep riding your horses - anything that keeps you going physically and mentally has to be good.
Thankyou for all your support, its so appreciated 😊 I have calmed down now so have put the kitchen knives away (not that I could hold them for very long anyway today!) Georje you hit the nail there, its because he doesnt see me everyday that I suspect he thinks the way I do, and because i put a brave face on it when I do mention im having a bad day he "jokingly" tells me im whinging again. He says he's only winding me up but it hurts, so I keep quiet, which then turns into a vicious circle. I've tried explaining the spoon theory but again he doesn't seem to grasp it. When I speak to him, which is everyday, I try to talk about positive things, for my own state of mind too, maybe I should "whinge" more often!
Hello
Try and enter in on the action on depression site, they may be able to help your feelings of depression and anger.
You can also contribute to this site for your RA.
When it comes to helping others it is a win win situation and we all benefit from from that as we all get support from those who we have talked to
I have a depression caused by my RA condition and I find talking to like minded people really good. My dog, Pax is always around He is a black Collie with a white cross upon His health, dogs know what is going on with your mood and pain and will play on you to lift my mood. So horses will do the same thing as they can understand when you are not right.
If you are doing voluntary work the same thing applies and those with a disability will accept you and give you support for your conditions.
It may be your boss may also need some of that urgent support
BOB
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