I'm always advised by my Doctors to REST!Maybe... - Behçet's UK
I'm always advised by my Doctors to REST!Maybe an obvious question but what does this mean.
Hello Dundee,
I know what you mean.. it is such a common thing that doctors will say to us, but what does that truly entail? To what extent are we to "rest" and "take it easy?"
I suppose this is a highly individualized thing; as this disease affects everyone differently-- for example- one person's fatigue may be so overwhelming to them that they cannot even get out of bed, while another person may be able to "tolerate" their fatigue and push through it. Also, some people are unfortunate to have more severe disease activity which makes them very ill and may even cause disability.
Behcet's is much like any other chronic systemic disease as it can be described as a "spectrum" disorder-- there are so many variations of the disease and things can change quite frequently for the same individual (meaning that they may be suffering debilitating arthritis for a couple of weeks which places many limitations on them, and then all of a sudden it settles, and a new, more milder symptom may flare up). So the amount of rest needed can even be different from one week to the next for the same individual.
Another thing to remember is that everyone tolerates and reacts to things very differently and in their own, unique way-- so two people may appear to be suffering the same disease severity and have similar type and amount of pain, but one person may have a higher tolerance and more positive response to it, while the other person may be unable to tolerate it and become depressed and even bed-ridden.
The concept of rest and taking things easy also varies greatly from one culture to the next-- like in Mexico where they treasure "nap time" and just look at how some countries have a more peaceful way of life and others are very fast-paced living.
Anyways, I guess what I am trying to say is that each of us needs to "listen" to our own bodies and do what is right for us. A person should never compare themselves to another, even if they have the same disease, because of the fact that everyone is so unique and different. What works for one person may not work for another.
I have also learned (although I still struggle with this) to not feel guilty about my own limitations. Someone who is perfectly healthy may be capable of working full-time, walking their dogs, running errands, clean their house, etc. and till have energy to spare, and they may wonder why I can't do the same. Others need to understand and accept that Behcet's Disease is a very debilitating illness that often causes a lot of pain, exhaustion, and just makes us feel weak and sick overall-- if they aren't able to do so, then maybe they aren't truly worth keeping around. I had this problem at my work-- I am only able to work a couple hours a week (if that even), and often my coworkers would wonder why I barely work and say things like "wow it must be nice to not have to work," and then when I am having a really rough time and can't move very fast, someone will always point that out and make a big deal about it. While these comments and glares hurt a lot, I try to tell myself to not bother wasting energy on caring what they think because they just don't get it and ultimately they never will.
What I try to tell myself is to do what I can, when I am able to. I have learned to "think" about everything before I do it so that I can spread my energy around evenly and get the things done that have to get done first so that I don't run out of energy (I really liked the analogy of the "spoon Theory"). This often means that I am unable to do many of the things that I would like to do, but I have to accept that's the way it is for me right now.
Not sure if any of my rambling is actually helpful.
-Jenna
I have severe M.E, rest when you have severe M.E (and I assume other conditions) is no light (eye mask), no noise, no thinking (in the end you learn how to 'switch yourself off'), laying in rest positions so your body is fully supported by pillows for example if laying on your side you have pillows inbetween your legs, pillows behind your back and another over you so your top arm is supported by the pillow. Anything else is seen as 'activity' no matter how big or small what you were doing is
Thank you Jenna for such a wonderful answer.I agree with everything you said,my main issue always been the guilt.
I have just read the Spoon Theory that you mentioned,its a great way to summarise the issues we face.
Thanks
Hi Dundee 
Brilliantly put Jenna, some of you are so good at putting things into words and yes making sense
Jenna
Couldn't agree more with the above. I am currently really tired and I know I have been doing too much. (Too much for me is working full time and constantly on the go). I am suffering today and am actually going home sick (something I really avoid if I can). My body has told me stop it and rest!!
If my body could talk then it would be telling me off right now and speaking to me like a child who is is stubborn!
Hugs to all
Angela
xx
Oh Angela how I empathise! At the moment I feel like that stubborn child, kicking against everything and wanting to cry cos I'm so tired but refusing to sleep.
The thing is, I CAN'T sleep. I sleep for ten to twenty minute bursts and then I'm wide awake again - even though I'm exhausted. This is night as well as day. When I wake up after that 10/20 mins I feel I've been asleep for hours and then Keith'll say something like, well, that wasn't long and I look at the clock. It is never longer than 20 minutes.
When I'm this tired is when my heart symptoms come on, with the swollen ankles, fluid retention and shortness of breath. Actually, at the moment I am scared that I'm REALLY ill - by that I mean with something more than Behcets. I know though that the docs will either brush it aside, or they won't and I'll have loads of tests which all prove negative and I'll feel a right wally 
Sorry for the vomit - didn't mean to!
Thank you darling - you understand perfectly. I am terrified they're missing something because there are so many different things wrong and it's hard to keep track of them all. But this circulatory thing - well it has me anxious and you know, Erssie, I'm usually a fairly laid back old tart1
No worries about that old bean - just concern for the OH! I suspect that the old girl had norovirus or some such. It is spread ridiculously easily - just a droplet in the air would be enough. I believe this year is a mutation year - it mutates every few years to keep ahead of us - so will be even easier to contract than before. You know the drill but keep him well hydrated - if you could get some dioralyte down him that would be good but I realise it's holiday weekend...
I must say, though, that if it was from the woman with the runny bum at the hospital I would have expected him to start somewhat sooner.
If he starts to bleed again then please, please nag him even harder to talk to a doc.
I have known blood but, I have to admit, not to that degree. But, as I'm sure you know well, the colon is rich in blood supply. I don't think the soya milk could have caused it - if it was 'real' milk there would be more of a chance but still not to that degree. Given the woman with the runny bum in close proximity, that seems the most likely cause - especially as the bleeding seems to have stopped. 24 hour virus and all that.
Diverticular disease causes massive blood loss like that. I wonder if he has undiagnosed diverticulitis and the soya milk aggravated it? My mum sometimes left the loo like an abbatoir when hers was irritated or got infected. I have diverticular disease but have never had that dramatic a blood loss. However, the cramps are from hell.
BUT: loss of lots of blood = <Hb plus
loss of blood should never be ignored. ll of which means he needs to seek medical advice.
Sending love - and more kicks up the arse for your OH. Tell him I've got me bovver boots on.
I seem to be fairly inept at knowing when to rest and then I end up "checking out" as I now call it and losing 2-3 days in bed, barely lifting my head off the pillow. Even swigging lucozade is too much effort.
I even drool, and drift in and out of sleep all day and then go back to bed at night.
I don't think anyone would believe it unless they suffered with it or saw someone with it.
I feel awake but anaesthetised....
Its early days for me but I think I am missing the clues still
Jill xx
Not early days for me but you are describing my life here Jill. I think it's that when we feel reasonably well we overdo it. Also, I don't sleep at night, which doesn't help. The only time I sleep is on my checking out days.
Erssie, that is appalling! We have the on the day for urgent and no future appointments to be had but I always buck the system by emailing my GP direct and he fits me in. I suppose I'm lucky to be able to do that.
They are incredibly disorganised though. I frequently get 3 copies of repeat prescriptions, because they've 'lost' them. And I regularly get messages from one particularly snotty gp who doesn't like me to say that 'no' I can't have my repeat meds cos I haven't had my bloods done. Mostly I have had my bloods done but the results haven't been filed or aren't on the computer or something. If I can't get an appt for my regular bloods I go to the hospital (to avoid the arguments over the meds) but that causes even more trouble and I still can't get my meds. Last time I was given the edict 'thou shalt not get thy bloods taken at the hospital but only at the surgery.' Okay, can I make an appointment for next week then please. No, we don't have any free spaces for a fortnight. But I have a repeat script in and they won't give me my tablets without the bloods. Oh well, you'll have to try going to the lab at the hospital then.
If I wasn't ill, I would be dealing with that crap!
Wishing your OH a clean bum and a pain free tummy xxxxx
