Any thoughts on why we feel crap when we over ... - Behçet's UK
Any thoughts on why we feel crap when we over do it?
nope - but tis a pain in the bum. I had intended to work on some silver etching this afternoon but, after a spill of acid that had to be cleaned, I am now sweating for England and ache something rotten. Thing is, I'm only just out of my bed following a long car journey (passenger, not driver) last weekend. Bloody hell it pees me off! Okay, so I can sit and read or something but I'm always aware that I have to do 'my stuff' in the good times and I get so frustrated 
Oh no! Believe it or not, I was involved in a car crash last Thursday! I suppose because my blood vessels are not as strong as normal, I have suffered enormous bruising where the seat belt (thank God) saved me. My partner is feeling very guilty about it all, as he was the driver. I needed to go to hospital on the day after because I was finding it hard to breathe. Good news, though because after a CT scan there are no broken bones, just bruising. The Oramorph they gave me worked wonders!!!
I am planning not to do much this week as I know I will pay for it if I over-do things.
With fellow frustrated good wishes,
Suzanne
Suzanne I've only just seen this! I hate the way these threads are organised. I hope you are okay - how scary that must have been. Still frustrated but feeling in good company!
Di
I work as a florist part time, and at busy times Im expected to work more.. my boss is fab though and understands that i get knackered more easy..
Just doing simple house work can get me sweaty and if im in bed late (after half 10) I can feel my throat start to ache and my body aches all over like flu...
Im 33 and terrified of what im going to be like in 5 years never mind 10 or 20...
When I have good days I do as much as I can and take wee breaks in between...but be warned dont push it...or you will set yourself back weeks not days...as I have learned time and time again!!!!
Nothing is more frustrating than when the sun is shining and all you want to do is sleep...
dawn x
Most people feel crap when they overdo it, whether they are ill or not. Having a disease like this accentuates it.
When your body is continually in a fight with itself and tries to take a breather, if you push it too far it will respond by upping the anti and making you feel so crap that you HAVE to rest.
Learning to manage how it affects us is as important as managing the meds we take.
I was supposed to be having my friend over for dinner and had to call her cancelling as I have no energy to even make a cup of tea. m I did ask my Rheumatologist about this and she just shrugged. Said it came with the illness.
I have been ill with fatigue for so many years now I have forgotten what it is like to be "normal". Because I was originally diagnosed with Chronic Fatigue Syndrome I learnt in those years to pace myself.... this was the only advice given to deal with it.
Now this is second to nature and I find a shortcut and better method for every thing I have to do. For instance, I even work out which rows I have to go down in the supermarket so as not to wear myself out going up and down, looking for things. Frequently use the Internet Shopping available for delivery and find easiers ways to cook etc.
Only taking on stress and problems that really need taking on and making lists of reminders so I don't wear my brain out just trying to remember everything.
Our bodies are so busy trying to do what other people [who are not sick] take for granted, that it has little room for anything more. Pushing ourselves beyond an ever changing indurance level, produces an already over exhausted immune system into overdrive.
It is in someways more important to learn to manage ourselves first so that the medication we have been given has a good chance of working better.
Our energy levels are like a bank account and there is very little left to go into it to save for another day. If we keep taking from the bank account and don't rest and look after ourselves with good food and proper sleep etc, there will be nothing left to call on.
Easier said than done - she says 
Andrea
Dundee...this is such a difficult aspect of the disease...one that I have been harping about to the doctors for so long.
Years before my Behcets diagnosis I began to have neurovascular issues...ANYTHING, any activity or experience under the sun that would raise my blood pressure would cause horrific problems/fluctuations with blood pressure and heart rate. My body could not handle any stress whether it be good or bad.
Now, like the others have written, I have to moderate my activities to keep them from being too exciting!
I feel like my experiences with feeling crappy have to do with what happens when I start to put more stress on my vascular system. Every time I have started an exercise regime over the past years the vasospasm would begin shortly thereafter...and then I would crash...lungs, eyes, bladder, legs...all go cuckoo. Sleep is the only thing that would undo this damage.
Especially horrible is the simple act of flying in a plane. It is always a game of roulette to see which system(s) will go wonky once I land. No matter what, after flying it takes at least 1-2 weeks for me to not feel like crap (so I always have to ask myself if the vacation is worth it).
'overdoing it' for me in my early 30s is equivalent to normal activity in a healthy 80 year old!!! I am sure there are many Behcets patients who understand this very well.
Absolutely supernova
I identify with your descriptions and the others above.
My mother at 80 years and mother in law at 92 are doing more than I have been able to do for some years.
It is difficult not to get bitter and dispondent, but even that would cause a reaction in my condition so I always try to remain possitive.
If I can't remain possitive, I tend to stay away from the world for a day or 2 to rest. I take this as a sign that I am doing too much.
A lot of people I know don't understand that this breaktime is an important side of managing my condition. I am not being selfish or grumpy or miserable....I am just coping.
That's what is good about this forum...we can say these things and not be judged.
Andrea
Yes! Andrea...I recently spoke candidly with a rheumatology consult that I had initially seen at the beginning of the Behcets and 5 years into the Behcets.
I told him that I felt that I was becoming bitter. That I could no longer tolerate the disappointment that came my way. Happy people made me mad!!
At this point, the only friends I have in my life are the ones that made it through the difficulty just as I had. The people that remain present in my life all understand the concept of 'checking out' for a bit. I hate it when I need to check out...but that is the way things go.
Like a song from someone goes: "I really don't feel mad at you. I am just mad at the world"
When this song runs through my head...it definitely means that I need some down time.
Part of what is so horrible about this disease is that I get REALLY, really mad with a flare. It is almost as if my mind and body want to shut everyone and everything in the world out. This response is so tell tale of a bad flare/experience. With each flare, I feel like a wounded animal who just wants to go to a dark corner and lick my wounds. And then BAM, I wake from a nap, the colchicine has kicked in, and it is time to move on.
You may find this useful - amazon.co.uk/gp/product/184...
Hi Tigerfeet
Did you find this book useful or know others that did?
It was recommended to me by a Clinical Psychologist who has clients who have/do benefit from it. It is not specific to BD but has some very useful advice about fatigue management.
Thanks I always find your advice useful
Keep doing it though! Rage rage against the dying of the light!!! It is hard after a day of overdoing it but it's important to push yourself and keep one's head up!
Tim
Ah, Tim - one of my favourite lines from one of my favourite poems...
Hi Tim
I just love your spirit and I mean that genuingly 
I have been there with the rest of them but now I am 51 years old now and have had this condition at least since I was in my late twenties.
Forgive me if my rage doesn't quite reach the heights you are expressing, but my head is well and truely up and a lot can be learnt by an old dog teaching a new one new tricks.
thanks again
Andrea
It is very important NOT to push yourself.
"Fatigue management and a positive outlook to the disease are best. Avoidance of overtiredness and planning of the day, to allow rest before and after an activity, work well, and most find that fatigue improves and memory becomes more efficient. It’s easy for Doctors to prescribe and hard for the patients to do!"
Dr Desmond Kidd, June 2008
Oh how true. I try to abide by Dr Kidd's tenet, but there are always circumstances when it is not possible. This piece of information should be given to everyone suffering from BD, or in fact, any of the huge variety of autoimmune diseases.
Best wishes to you, your blogs are always so sensible.
Suzanne
Thank you.
You are right of course, there are always circumstances when it is not possible.
Managing day to day in a sensible way and planning as much as possible at least gives us the best chance of 'surviving' the unexpected. When I think of all the things I have tried, failed at, learned from etc, regarding management of the condition and how I live with it, I sometimes think it would be great to have a factsheet for, as you suggest, anyone with an autoimmune disease and also anyone who suffers from fatigue or stress. If people could take just one thing from it which helps them, then that is less energy expended on working it out.
Tiger
Why don't you start one? I know that it could be a long time coming, given our propensity for falling off the planet and out of site occasionally, but I for one would love some pointers.
This is written with true feeling having crashed out at 6 a.m. and just surfaced at 5 p.m - desperate to go back to sleep 
LOL. I know it isn't funny as such, but 'given our propensity for falling off the planet and out of site occasionally' has really made me chuckle. I'm off to bed with a smile on my face. *thinks* Maybe not, don't want to give anyone the wrong impression. Tee hee.
Knew I could do it....
