Hi just a quick question really- how do you distinguish between your fatigue and your 'can't be bothered' moments?
I'm asking this because yesterday I had a gentle low activity day as it was the first day of 1/2 term so I wanted to nurture myself after just finishing my first full 1/2 term back teaching since my RA was diagnosed. It was a lovely day and I achieved all that I set out to do - namely Nothing! But today I am lethargic and am lacking umph. I am pottering about doing odd bits and pieces all be it rather slow and steady as I go. I find it hard to recognise my early fatigue signs partly because of my eye problem which makes me think I'm tired when I'm not as the eyes are struggling (particularly at the moment as I am coming up to my next eye treatment in 10 days and thus the old treatment has been steadily loosing its effectiveness) and partly because I sometimes read them as 'laziness' because of old adages such as 'a day in the morning is worth two of the afternoon' from my youth going around my slightly crazy head!
Any thoughts would be appreciated
All the best
Ali
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I don't know the answer Ali, but I can tell you that I feel exactly the same. I got up, had breakfast and went back to bed for an hour because I felt so incredibly tired despite a good nights sleep. I did stay up late to watch the Eurovision Song Contest. Still very lethargic and not feeling great. I suppose it's going to be one of those days. Let's not beat ourselves up about it! Angela.
One of those days Indeed Angela so I am going with the flow and snoozing, reading, chillaxing on the sofa whilst drinking loads of water to see if that will help.
I hope your day/energy is picking up or that you are at least relaxing into this lethargy-chilaxing day... Mine is being eased by listening to the chant Jora posted about some time ago... If I'm forced to rest then I just as well do it in good company and his holiness the Dala Lama is pretty good company!!
Ali I used to think that I understood when people spoke on here and Lupus UK about their fatigue having always been a bear of little energy on the physical front. But I always had plenty of mental energy until recently and for me this is where the difference between low energy/ tiredness and lack of mojo and fatigue falls. With the exception of late pregnancy and post viral stuff I hadn't really encountered true fatigue before I now realise.
When my RA was a proper, classic kind I raced on extreme pain in joints and tendons almost like an adrenalin burst. I did have sleepy sluggish periods before and after a flare up but not like those I've encountered over the past year. These are colossal and prevent me driving, going out for long periods and each hospital stay has been preceded and involved me sleeping most of the day despite strenuous efforts not to because I may not sleep at night. I literally find myself unable to think properly or function after a brief awakening. So have to sleep before all visiting times and can't concentrate long enough to read anything remotely long and rambling although it doesn't stop me writing in a rambling manner as I'm doing right now!
Ten minutes until visiting time - hoping friend forgets to come and see me so I can slumber but my neighbour is longing to chat about her consultation so I had better go. Just wanted to explain my observations about how this rheumatoid fatigue affects me. Tx
Ali, isn't it wonderful. I'm heading of to the US in the next ten days or so to look after a brother of mine who has had 4 operations in the space of 11 days. Poor thing has been through so much.......look I'm away off subject again....I'm forever doing that. Anyhow I have a copy of the chant and willbe taking it with me for him to relax to. He would be into this sort of thingto begin with so I'm sure he will get great benifit from it.
It is difficult to know. It almost seems the less I do the less I want to do! I have to try to set myself goals and jobs to do to try to stay focussed. Like Angela, I was up late last night. Stag night in London with my son! Yes I am getting too old for that sort of thing, but had to be there.lol. So today I didn't get up until 11 then decided what I wanted to do and tried to complete it. So good luck Ali, take it easy and do a little at a time. Everything completed is a victory for us.
Thanks for your input it certainly helps to hear others perspectives especially as I tend towards giving myself a hard time for being 'lazy'. The fatigue shouldn't really come as any surprise to me as I regularly slept away whole weekends during the two years after having rheumatic fever and over the subsequent years have done so once every 4-6 months. I have enjoyed some light gardening this afternoon and feel better for that.
Thanks again for your feedback
Ali
P.S. Did you escape the rigours of a visit Twitchytoes or did you have to 'grin and bear it'?
I think it's really, really, really complicated. Every time fatigue hits me - which is about 2 days a week at the moment and pretty bad - I think I'll anticipate manage and accept it better next time but I don't. Denial's still a big factor.
I'm also coming to realise that there are times when lethargy is down to a touch of depression, linked to the disease but not necessarily with a physical cause. Pacing's so important but very hard to do properly. I guess anything that involves confronting my limitations, even purposefully enjoying a really nice, slow day, might leave me feeling a bit lethargic and low.
It's a difficult one isn't it. When I look back (although I try not to) at the life I had before: a full time job, two dogs, everyone loved the dogs but somehow it was left up to me to feed them walk them twice a day groom them vets etc.. 4 children one unpaying guest, word of warning never offer advice to your teenagers friends, I did, she was thrown out & lived with me for two yrs! Anyway you get the gist. I got tired but a long bath would perk me up & off I'd go again. Never stopped. But now the children have flown the dogs are on the other side (hope they're being fed) the unpaying guest is in oz, I had to give up my teaching job the great big house has been sold. So now I can sit all day if I want to & some days I do. I've never felt so tired in all my life. I've never slept so well either sometimes I sleep for twelve hrs this is someone who rarely slept more than five. Is it depression or RD or both, I think it's RD. I will push myself to do things, walking swimming housework etc.. But if I overdo it then I have to suffer the consequences, not nice, especially when I can't take painkillers.
I guess what I'm saying is we have to listen to our bodies but push our minds.
I think Caza has hit it on the head. While we are busy we are almost running on adrenaline. I know I do when I have a lot on at work, touring, lectures' demos etc I just keep going and going. It's only when I stop that my body realises and goes 'whoa'! What have you done! Then I can't fill the day and go into the lethargy faze. Weird 😳
I have asked myself this same question many times. I have recently turned 65 but age has never stopped me, before RD, from doing what I wanted to do. I was diagnoised coming up on 5 years and have noticed a distinct change on my energy levels.
I used to be a cleaning fanatic but again with age that has changed too. I'm sitting here looking as balls of white dog hairs are gathering in the corners of the room!!!!
Anyhow, there are days when all I am really capable of doing nothing at all, and I mean nothing, anykind of physical activity is simply impossible. Its out of the bed and on to the sofa, eyes drouping, doozing on and off for the duration of the fatigue. That is fatigue and there is nothing you can do about it. Of course there are days too when my energy levels are low and I have an easy day which means tootering around the house doing something, resting for an hour or so and then do some more tootering and on it goes.
Now there are days when I just decide not to do anything and have an easy day.......here in Ireland and in other places too I'm sure that is called 'swinging the lead'......in other words taking advantage of an on going condition to have a lazy day.
At all times listen to your body and do what is best for you and if that means having the odd day 'swinging the lead' then by all means you just do t with my blessing! XX
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I feel exactly the same Postle! It's one of the hardest things to manage, physically and emotionally. Hope everyone is ok today x
Can't be bothered
Does anyone use a chiropractor or could the manipulation cause a flare? A severe lack of physiotherapists in my area :( 
What a difference in a year.....
1st bike ride in a year!
Anti tnf appeal
