So tired!

[Crazyjo]

Why does this disease wipe me out so much. Today has been hard to keep myself out of my bed. I just don't know what to do with myself. How do I make my family understand it's not just normal tiredness!

[cathie]

Oh dear. Can any of your family go with you to clinic appointments? I found that getting my husband and later daughter involved did help them to feel more involved. Husband often reads the NRAS magazine too, just the odd article is quick to read and digestible. If they want to be involved it might help a lot. Hope you can get through to them!

[Crazyjo in reply to cathie]

Thanks Cathie, it makes it a bit harder as I live with my parents and they getting on a bit and not always well enough to come to apps with me, and I don't have a partner or kids I can share it with. Magazine reading seems a good idea will look in to that. I thought I might let them read some of the items on here to see if that helps them understand more

[cathie]

that spoons story is a good one to get things across. It shows how you need to pace yourself to keep going. I remember being helped out of the car by my 100 year old father - that was a bad day, but it did make me think! I tend to leave the NRAS mag in the bathroom where members of the family might pick it up and leaf through and learn something in the meantime

[dbestdeb]

I deal with the same thing and have been searching for something to help with the fatigue. I bought something at the health food store called Adrenaplex by Terry Naturally and it is helping me some I think. This is just the first week, and I am praying it will have no adverse affects. If it ends with a good result, I'll let you know.

[Crazyjo in reply to dbestdeb]

That be great, good luck

[Neonkitty59]

Leave them some literature to read? Nothing heavy .. just how it affects your day to day activities. If it's something official in print then they may understand more? I know I saw some booklets in the Physio Department (Arthritis Research Council I think) for that very purpose .. written for arthritis patients' families. It is frustrating that a shower or hairwash can wipe you out for ages. I am like that when my RA is badly flaring (now unfortunately) and cat naps and feet ups on sofa don't seem to make that much difference. Hoping my new med does. I also think, Jo, that many painkillers./meds we take have side effects of making you drowsy/sleepy. (I know my doormouse tendencies started to get worse when I started on Fentanyl transdermal patches. They are known for that.) Hope that Spring has you feeling less sleepy and more like the lambs skipping about! Ah if only xx

[net2012]

My husband says until you walk in someones shoes it is hard to understand. Luckily or unluckily for me he has seen me with a flare starting and been with me from beginning to end so to some extent understands. My husband had a heart attack 2 years ago at the age of 50 and has a great fear of having another one, especially as he works away from home but you cannot understand that real fear unless you have been in his place. Some things that helped me when I felt misunderstood over the fatigue and weight loss came from Occupational therapy. That when in a flare or sometimes an ongoing flare which we would ourselves not judge as a flare is that the inflammation is so like the flu (ie cytokines gear up) as in when you have flu the fatigue is overwhelming. How do you explain that within 2 hours of getting up you just want to fall over with exhaustion. Also the inflammation eats up the calories. For me that was a great break through and an answer as to why I had lost 20lbs when I had not lost my appetite and I could give that answer when people were saying you should eat more!! I like the spoons theory that Cathie talks about but not used it myself. Good luck Jo

[Neonkitty59 in reply to net2012]

Until my husband and I went on a long weekend about three months after my RA was first diagnosed and I was in constant flare, he didn't understand, but then for the first time we were away together i each other's company for a few days, he saw the madness of what my daily routine had become ... just trying to get out of bed and get dressed and washed, etc. He hadn't a clue as he was always up early and away to work. Sometimes there are those who think us feeble/lazy when we would give anything to be industrious and active again. Even our nearest and dearest just don't always get it as it is hard to take one board someone so active is just stopped in their tracks when the condition is not under control. Fortunately my other half is a star and I have close friends who are superb. Never pressure me but I have had to just let some people drift who even made fun if my RA. They definitely didn't understand. Mostly good people though glad to say!

[lubash]

For me sharing with my husband and giving him articles on RA and how it affects daily activities helped.Going to Doctor appointments with him also made him understand it was something real and not an excuse not to help with house chores.

Be open about it with people close to you.

Good luck

[skinnycappuccino]

Hello Crazyjo! Oh yes, fatigue...I've just been allowed to taper my Prednisolone again and today I feel so exhausted just the thought of having to go out and catch a bus and go see my friend makes me want to cry! Work this morning was a nightmare. Luckily, my boss is lovely and told me to take the rest of the day off and stay home tomorrow if it's not better.

I think giving leaflets and brochures to people really helps them understand RA. As for the difference between fatigue and just being tired - I've been so zombiesque that I've almost got run over a car a few times and I think that's when my parents finally understood the difference.

Best, Christine xx

[Crazyjo in reply to skinnycappuccino]

Hi Christine. Unfortunately my tiredness has led up to a really bad flare up at mo, none of my painkillers are touching it at mo, and I am on some pretty strong ones. Am waiting at mo for the rhuemy nurse to call me back to see of they can do anything to help

Jo x

[skinnycappuccino in reply to Crazyjo]

Hello Jo! Oh no, sorry to hear that I hope the rheumy nurse called you back and had some good advice!! I hope you're feeling a bit better by now xx.

[Crazyjo in reply to skinnycappuccino]

Got emergency appointment to see my rheumatologist tomorrow afternoon and my doc has given me some stronger morphine as the one I on already not touching the pain. Hopefully will help as worse been for ages

Jo x

[skinnycappuccino in reply to Crazyjo]

Very glad to hear you got an appointment with the rheumy tomorrow!! I hope the extra morphine will get you through until then. So sorry to hear you're in so much pain Do keep us updated on how you get on! Christine xx