Fatigue

[Dryhill]

The tiredness people with ANCA-associated vasculitis (AAV) experience is a greater cause of poor physical health than any other side effect of the condition, researchers in Aberdeen have concluded.

Their research will confirm what every person with a vasclitides know first-hand; that the fatigue caused by vasculitis has far reaching consequences into every day life.

Hooray at long last someone has realised how bad fatigue can be. The researchers at the University of Aberdeen have written an article in the UK journal Rheumatology, basically urging doctors working with us weggie sufferers to take time to recognise and evaluate fatigue. They finish by stating that a better understanding of the mechanisms of fatigue are needed to support the "new generation of AAV patients where long-term survival is considered the norm and issues related to quality of life take precedence"

For me the constant fatigue is one of the things that really gets me down, I do not have a big lawn but I have to have several rests when cutting it. Luckily my job is just sitting down driving a car, I do not know hbow I would cope if I had phsically strenous work. Any one got any comments or views?

Jim

[Pete]

Jim,

I agree with you about not knowing how I would handle a physically demanding job. Once I got into remission last summer, I felt like I was almost back to my pre-wegs self. It's taken a lot longer to bounce back since my flare in January. I don't necessarily feel fatigued, but I have much less strength and stamina than before.

Pete
dx Jan 2011

[pberggren1]

Oh yes, Wegs has fatigued me for sure.

I find my doc recognizes my fatigue because he always asks how my energy level is.

With the early years of Wegs my energy level was much better than what it is now. After having 5 flares and other major complications, it all takes its toll and compounds on our bodies and makes us weaker over time.

[Al]

All important points, Jim. And, while some doctors do worry about the fatigue from a medical point of view, they do seem to avoid thinking about the human aspects. I would work hard to try to fix this, but I kinda don't have the energy, you know?

Al

[renidrag]

The only symptom I have retained since remission is the fatigue issue. There is no way I can (could) return to my profession. I don't think the doctors realize what this can do to people. I used to be known in the neighborhood as "the man that doesn't stop". Now I rarely go out doors for more than a few minutes. It angers me.
Dale

[vdub]

It's somewhat comforting to know that I'm not the only one, but disheartening to think this is a common issue. I had one 3 month period over the past 4 years where I actually felt pretty good. I can't say that I feel bad now, but I am just soooo tired. I know I should be doing things, but I just don't have the energy anymore. I'm not sure what to do about it or if anything can be done about. I'm sure wiped out, tho.....

[pberggren1]

My doc said fatigue is the most common issue. He said all patients have this to some degree and some time and some have it all the time really bad.

[vdub]

This is really a big pisser. When I went into remission, I was thinking "whoa, life will be good for a while". No, it's not going to improve, this is it, this is all you get. I just need to get used to it and figure out some work-arounds. I'm going to try human growth hormone, which is an option for me because of the no pit issue. I have low expectations that the HGH will actually change anything. I've been pretty bummed for the past couple months and don't see things getting much better.

[Lightwarrior]

Jim,
This at least validates that my being exhausted all the time is not just me.

[vdub]

I have no idea how you keep up the pace of being a nurse....

[Dryhill]

I find it comforting that my lack of energy and the article is backed up by so many of you confirming how tired you get. The downside is realising that it would seem this is what the rest of my life is going to be like. About ten years ago my neighbour came and had a quiet word with me because I was painting the outside of my house, redcorating/tiling the kitchen, re-landscaping the garden and sorting out the lighting for several local drama groups. He was concerned at the comments he was getting from his wife as she wished he was more like me, in the last lot of snow we had he came and cleared my drive ..... oh how times have changed.

Jim

[Sangye]

Add me to the pile of Weggies who can hardly function due to fatigue. Do you guys also experience weakness with the fatigue? For me it's a profound weakness, not just feeling tired. I usually call it fatigue with my doctors but I need to be more clear and call it weakness, too.

[Al]

Add me to the pile of Weggies who can hardly function due to fatigue. Do you guys also experience weakness with the fatigue? For me it's a profound weakness, not just feeling tired. I usually call it fatigue with my doctors but I need to be more clear and call it weakness, too.For me, not so much muscular weakness, Sangye. Not exactly, anyway. I can still lift heavy equipment, though when I do, I wear myself out very quickly. I have learned to always bring my handtruck, and allow more time for load-in and out. I am thinking of applying for a disability pass--not for groceries and the like, as merely walking doesn't present any problems, but when I go to a gig and need extra trips to load and unload, I get utterly exhausted, and ot of breath. Then I am no good the rest of the day.

Al

[Al]

I find it comforting that my lack of energy and the article is backed up by so many of you confirming how tired you get. The downside is realising that it would seem this is what the rest of my life is going to be like. About ten years ago my neighbour came and had a quiet word with me because I was painting the outside of my house, redcorating/tiling the kitchen, re-landscaping the garden and sorting out the lighting for several local drama groups. He was concerned at the comments he was getting from his wife as she wished he was more like me, in the last lot of snow we had he came and cleared my drive ..... oh how times have changed.
Yeah. I'm glad the researchers have had these profound insights. I put them in the "Duh--ya' think?" category. They could have just asked us, you know....

Al

[me2]

They could have just asked us, you know....

Al
I tell them but they don't LISTEN. They hear but they don't understand.
I have been telling my doc about how debilitating the fatigue is and all he does is give me a blank look - until my last visit where he gave me some sage advice. "You should exercise 20 minutes a day"

If I could exercise 20 minutes a day and still have any energy left over I wouldn't be complaining about fatigue. I have to save my energy to do "20 minutes of laundry" or "20 minutes of housecleaning". Most days I don't even have that.
This pencil necked , noodle armed choir boy (I'm stealing that line from the Simpsons) couldn't last 20 minutes doing the heavy physical work I did for most of my life. Like stocking cabinets in new buildings up several flights of stairs. Digging ditches by hand around high voltage lines. Cutting my years worth of fire wood every year.

For recreation I did mountain climbing - real mountains (the Olympics here in Washington state). To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.
Ok, I'm mad enough now I still think I could take him on a 20 minute challenge. Problem is , I would be out of commission for several days and he wouldn't. Do you think he knows that?

[pberggren1]

The weakness comes and goes for me even though I am in remission now. I did not have weakness back in 2005 to 2007.

[me2]

My analyst told me to be more 'angry' -- how am I doing?

[vdub]

Here are the reports if anyone is interested.... They are dated July2010. With all the reserach I've done, I'm surprised I didn't run across them before. Thanks, Dryhill!

This is an abstaract….
Fatigue: a principal contributor to im... [Rheumatology (Oxford). 2010] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/20400759)

This is the full report….
Fatigue: a principal contributor to impaired quality of life in ANCA-associated vasculitis (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3091420/?tool=pubmed)

I'm with Al in that it hasn't affected my physical strength. I unloaded my rv hitch by myself the other day -- it's 256 pounds, so I think I still enough strength. And, I can't really say I feel particularly bad; a little heartburn now and again, itching psoriasis, numb legs, but nothing debilitating.

It's totally an issue of being tired. Not go-to-bed type tired, but more of one where you just want to sit down and not move. Like I said earlier, with the exception of one brief 4 month period, it's been this way 4 years. I have so many things I want to do and just can't do it....

Does anyone know of any treatment for it or is this the way it's going to be?

[Al]

They could have just asked us, you know....

Al
I tell them but they don't LISTEN. They hear but they don't understand.
I have been telling my doc about how debilitating the fatigue is and all he does is give me a blank look - until my last visit where he gave me some sage advice. "You should exercise 20 minutes a day"

If I could exercise 20 minutes a day and still have any energy left over I wouldn't be complaining about fatigue. I have to save my energy to do "20 minutes of laundry" or "20 minutes of housecleaning". Most days I don't even have that.
This pencil necked , noodle armed choir boy (I'm stealing that line from the Simpsons) couldn't last 20 minutes doing the heavy physical work I did for most of my life. Like stocking cabinets in new buildings up several flights of stairs. Digging ditches by hand around high voltage lines. Cutting my years worth of fire wood every year.

For recreation I did mountain climbing - real mountains (the Olympics here in Washington state). To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.
Ok, I'm mad enough now I still think I could take him on a 20 minute challenge. Problem is , I would be out of commission for several days and he wouldn't. Do you think he knows that?This made me laugh, Kirk--which is good for the soul, I've heard. Doctors seem to be more influenced by statistics than individuals. Perhaps they are so much less personal. So they do seem to wait for research to tell them what to believe, rather than listen to their customers. Your Med-boy reminds me of when I went to see the lung guru at the University Hospital. (My first overt symptom was a lingering cough.) He had his assistant, a flabby kid half my age, run me 10 floors of the back stairwell. I had the poor chap winded after 5 floors.

I used to climb also--mostly in the Cascades, though. I can still hike some, but it becomes more of a challenge to recover. Fat lazy slob that I must be (just like you and the rest of us) I'll let someone else split the logs for me....

Al

[Debbie C]

I too am always tired..I wake up in the morning with expectations of things I want to get done and by 2:00 I need a nap and I hadn't got anything done. I am also glad to hear (well I shouldn't say glad ,I'm sorry we all have to go though this ) but I'm not the only one who is completely worn out. My kidney dr. told me I need to start doing yoga and more walking.

[drz]

I too am always tired..I wake up in the morning with expectations of things I want to get done and by 2:00 I need a nap and I hadn't got anything done.

I can resemble this remark as Garfield used to say. I check my list of things to do every day and wonder which ones have to get done, usually a medical appointment some place, sometimes the laundry or dishes, get top priority. Some times on a good day I can get an extra thing or two done on my list.

I have all the symptoms mentioned--fatigue, weakness, lack of endurance, feeling tired most of the time, needing frequent naps and rest breaks, and inability to concentrate on many mental things due to fatigue etc.

When i complain to my doctors they remind me of all the reasons i should have fatigue--I have diabetes so blood glucose levels are often too high or too low which cause weakness and fatigue, , lung damage, kidney damage, low testosterone due to damage from CTX IV, damage to balance mechanism which makes walking more difficult, neuropathy in feet causes weakness and more balance problems, anemia from Wegs, etc.

Yet my doctors often give me questionnaires to fill out about my energy and daily functioning. They mentioned taking a testosterone supplement might help me feel stronger and give me more energy but side effects would accentuate some of my urology problems and increase my risk of prostrate cancer so probably not a good idea. I do get some supplements to try reduce anemia and they have helped. I also just started pulmonary rehab which is supposed to help my damage lungs and heart work more efficiently which should increase my endurance.

I used to enjoy going on long hikes of several miles in scenic places like Death Valley and other National Parks and now on a good day I can make it two blocks to the nearest city park to see the birds or maybe a mile walk if i can get several rest stops along the way.

The fatigue and lack of endurance sure has been a serous life style changer for me along with deafness and loss of balance and increased neuropathy, worse control over diabetes due to prednisone meds, inability to concentrate from fatigue etc but my doctors often remind me how lucky I am to still be here and able to do as much as i can still do--not in bed, not in wheel chair, not using a walker anymore and often I can get by without my cane. Just take lots more pills, spend most of time going to medical appointments, and struggle just to try keep up with routine daily tasks.

The therapist for pulmonary rehab thought a 50 mile bike ride or long hike in mountains at 10,000 feet was an unrealistic goal for me but thought I might improve to where I can do a short two or three mile hike on easy level terrain again and that would be a great improvement. I would even be happy to just be able to walk a couple miles uptown and back again, Another dream of mine is to be able to just get through a normal day without needing a nap or two so i can enjoy a sedate trip like a bus tour to Branson again. (assuming my new hearing aid for my osseo-integrated implant works well enough for me to enjoy the music.) Last week I did enjoy Yomandu Costa's guitar concert when sitting ten feet away from him even with my limited hearing and Brubecks jazz performance from about thirty feet away but then half the fun is just watching them perform even if i can't hear or understand the oratory comments and jokes they make on stage.

yep, this fatigue stuff is a serious issue for most of us. But we will soldier on anyway, right?

[Dryhill]

yep, this fatigue stuff is a serious issue for most of us. But we will soldier on anyway, right?

Yes only another ten miles to go :mellow:


Al, like you I still seem to have my normal level of strength, just not the abality to continue doing anything for any length of time.

Jim

[Al]

....yep, this fatigue stuff is a serious issue for most of us. But we will soldier on anyway, right?Great post, drz! You heard Brubeck? I must be getting pretty long in the tooth. I last heard him about 15 years ago, and he was ancient then. But great stuff.

For what it is worth, for those who have been told to exercise more.: I do try to do enough gravity-resistance work to keep the bones from leaching out, but much of my daily exercise program is given over to low-impact stuff like Qigong and Tai Chi. This I can do without incurring fatigue. Indeed, I find it sort of energizing--particularly the Qigong, which emphasizes breathing.

Al

[delorisdoe]

I can resemble this remark as Garfield used to say.

Seriously???? I always thought my dad made that quote up. :bored:

[delorisdoe]

Great post, drz! You heard Brubeck? I must be getting pretty long in the tooth. I last heard him about 15 years ago, and he was ancient then. But great stuff.

For what it is worth, for those who have been told to exercise more.: I do try to do enough gravity-resistance work to keep the bones from leaching out, but much of my daily exercise program is given over to low-impact stuff like Qigong and Tai Chi. This I can do without incurring fatigue. Indeed, I find it sort of energizing--particularly the Qigong, which emphasizes breathing.

Al

I always find moderate exercise-20 minutes worth makes me more energized for a while anyway. Also, I seem to sleep better when I do even a little exercise especialy of the outdoor variety.

[freakyschizogirl]

So glad i saw this thread as its exactly how i feel at the moment.

I dunno if its because i had RTX 2 weeks ago, i'm tapering the pred or cos i am anaemic but i am beat. I cant do much and then i tire out so easily. My fiance keeps nagging me to rest but i really dont want to 'give in' to this cos i feel like if i do that it will win in the long run.

I just get soooo tired, which isnt like me and then i get really emotional - which isnt like me either!

I dunno what my point is here but i'm glad i'm not alone.

[pberggren1]

It's probably all 3 Sam.

[me2]

For the first time I agree with Phil. I can vouch many times over that Rituxan makes me tired and pred reduction has gotten harder and harder to do as the years have gone by. By that I mean I feel aches, pains and lots of fatigue. I have not had anemia but certainly have heard enough about it to know that is another whammy. So be a patient with yourself and find your own limits. Its kind of interesting actually (as if it were someone else suffering) that activity is good for the part of us that is HEALTHY, but for the part of us that is sick or suffering from imbalance(the pred reduction etc) activity is a drain . The one aspect pushes us forward toward being more healthy , the other is a reversal. And we have to walk this tight rope , this delicate balance of knowing for ourselves are we doing ourselves more good by pushing a little or more harm.
I return now, to disagreeing with Phil. (I don't know about what , but it just seems like the thing to do)

[Dryhill]

I dunno what my point is here but i'm glad i'm not alone.

Sam, that is what makes this forum so important to me. I do not like being so tired all the time, but at least I know there are others suffering the same as me, and in a lot of cases are in a worse state than me - it helps put my troubles into perspective.

Jim

[Al]

I always find moderate exercise-20 minutes worth makes me more energized for a while anyway. Also, I seem to sleep better when I do even a little exercise especialy of the outdoor variety.I agree, Leigh, as I have been sleeping better since doing half an hour or more of Qigong every night. Mornings still aren't my thing, though....

(BTW: What, exactly, is your avatar supposed to be, Leigh?)

Al

[pberggren1]

For the first time I agree with Phil. I can vouch many times over that Rituxan makes me tired and pred reduction has gotten harder and harder to do as the years have gone by. By that I mean I feel aches, pains and lots of fatigue. I have not had anemia but certainly have heard enough about it to know that is another whammy. So be a patient with yourself and find your own limits. Its kind of interesting actually (as if it were someone else suffering) that activity is good for the part of us that is HEALTHY, but for the part of us that is sick or suffering from imbalance(the pred reduction etc) activity is a drain . The one aspect pushes us forward toward being more healthy , the other is a reversal. And we have to walk this tight rope , this delicate balance of knowing for ourselves are we doing ourselves more good by pushing a little or more harm.
I return now, to disagreeing with Phil. (I don't know about what , but it just seems like the thing to do)

Thanks for the laugh Kirk. This really cracked me up......and now back to our regular scheduled programming...lol.

[malin]

Fatigue is one of my main problems as well, that and joint pains :(

I used to find it very hard to explain how I feel to family and friends but found "the spoon theory" that I use all the time now! I have even sent it to my manager at work so she could understand my needs and feelings a bit more!

The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)

[freakyschizogirl]

I've read that before Malin but it is a rather good analogy to how i'm feeling now!

Wish i had a better way with words, what the spoon theory did was genius.

[LisaMarie]

Fatigue is just one thing we have to live with and pray it don't get worse...hate it but deal...taking more naps helps some but not always..kinda like sleeping your life away..not my idea of fun or life

[Psyborg]

How do you classify mental versus physical fatigue. Physically I feel pretty good most of the time. But this particular flare I seem to be mentally exhausted constantly. I'm having a lot of trouble thinking...frustrating to feel dumber right now. On one hand my body says it's not tired, but I feel like sleeping. Basically I hit the bed and stare at the ceiling for a while and wake up 30 times a night (exageration sorry...)

[freakyschizogirl]

I dunno how to classifiy it either but i am so tired i will be listening to what my fiance is saying but not taking a word in and eventually i have to say, sorry what did you say?
I also feel so tired that if i sit or lie down i will slip into sleep very quickly and sleep for ages (a good 10hrs last night)

[drz]

I like the spoon analogy too but wish it was easier to somehow get more spoons. My number doesn't seem the same from day to day. I think the mental fatigue is harder to handle than physical.

I can do email or read if just physically tired but when mentally exhausted i can't really do much except look for items I can't find and sleep or rest is much harder. Sometimes a visit with a friend or phone call seems to help a little. Otherwise a walk in the park or around the lake or other light physical exercise seems to help mental fatigue the best and sometimes works for physical fatigue too. Last night I enjoyed watching a couple hundred egrets gliding into their night roosting spots in trees around the lake and a dozen or two fuzz ball baby geese being herded by their parents and the short walk helps me relax and feel better too. Unfortunately mamma duck seems to have had some bad luck and something got some of her eggs and she had to lay some new ones but don't know if they will be fertilized ones that hatch. I think she deserve a big medal for her dedication of staying on the nest for a month with nothing to show for it so far.

[Debbie C]

OK..what is the spoon theory?

[Lightwarrior]

Go back up to Malin's post and follow the link. It is really very good.

[Dryhill]

I dunno how to classifiy it either but i am so tired i will be listening to what my fiance is saying but not taking a word in and eventually i have to say, sorry what did you say?
I also feel so tired that if i sit or lie down i will slip into sleep very quickly and sleep for ages (a good 10hrs last night)

Sam, have you noticed how some tv programmes do not finish properly and the next programme does not start at the beginning? My so called friends try and tell me that I had fallen asleep and missed the end and beginning of the programmes, but I am sure trhat cannot be happening to me.

Jim

[drz]

Go back up to Malin's post and follow the link. It is really very good.


The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)

[freakyschizogirl]

Sam, have you noticed how some tv programmes do not finish properly and the next programme does not start at the beginning? My so called friends try and tell me that I had fallen asleep and missed the end and beginning of the programmes, but I am sure trhat cannot be happening to me.

Jim



I have similar problems, the night before last i was lounging on the foot end of my bed watching a DVD. I must've fallen asleep cos i woke up and the DVD had ended. I sat up the pillow end and scrolled through the DVD to the last bit i remember (20mins in) and started to watch again. The next thing i knew i was awake again and extremely hot because i had left my heater on and the DVD had once again ended. I took this to be a sign and turned everything off and went to bed.

I also "rest my eyes" alot when i'm at my fiance's house. He swears blind that i fall asleep - i'm just a very heavy napper! Its not my fault that he's a very comfy cushion. And apparently i snore a little - i'm just aheavy breather. :w00t:

You're not alone Jim, my Mum experiences exactly what you've described to me, she thinks its a conspiracy by the TV companies.

[Al]

Sam, have you noticed how some tv programmes do not finish properly and the next programme does not start at the beginning? My so called friends try and tell me that I had fallen asleep and missed the end and beginning of the programmes, but I am sure trhat cannot be happening to me.

Jim

Hmmm....

Charles Dickens wrote a lot of stuff like this. Jim, are you sure that you and Sam aren't just watching some min-series...?

Al

[chrisTIn@]

(BTW: What, exactly, is your avatar supposed to be, Leigh?)

Al

I'm curious about that too...:unsure:

[pwc51]

I have similar problems, the night before last i was lounging on the foot end of my bed watching a DVD. I must've fallen asleep cos i woke up and the DVD had ended. I sat up the pillow end and scrolled through the DVD to the last bit i remember (20mins in) and started to watch again. The next thing i knew i was awake again and extremely hot because i had left my heater on and the DVD had once again ended. I took this to be a sign and turned everything off and went to bed.

I also "rest my eyes" alot when i'm at my fiance's house. He swears blind that i fall asleep - i'm just a very heavy napper! Its not my fault that he's a very comfy cushion. And apparently i snore a little - i'm just aheavy breather. :w00t:

You're not alone Jim, my Mum experiences exactly what you've described to me, she thinks its a conspiracy by the TV companies.

How many TVs are sitting there playing to sleeping viewers?! It happens to me too much too. Usually the more interested I am in the program the more I am likely to fall asleep. (for those in the UK) Thank goodness for iPlayer!

[Dryhill]

You're not alone Jim, my Mum experiences exactly what you've described to me, she thinks its a conspiracy by the TV companies.

Sam, I think your mum might be on to something. Tell her I agree with her assessment of the situation.


Hmmm....

Charles Dickens wrote a lot of stuff like this. Jim, are you sure that you and Sam aren't just watching some min-series...?

Al

Doubt it Al, I think Sam's mum is right, it s a conspiracy.


How many TVs are sitting there playing to sleeping viewers?! It happens to me too much too. Usually the more interested I am in the program the more I am likely to fall asleep. (for those in the UK) Thank goodness for iPlayer!

Peter, I use iPlayer far to much for my liking. Why can they not make some device that realises a viewer has gone to sleep and starts automatically recording the rest of the programme?

Jim

[me2]

"Why can they not make some device that realises a viewer has gone to sleep and starts automatically recording the rest of the programme?"

They have invented this. They can be very expensive , temperamental, and difficult to find- a spouse.

[Dryhill]

"Why can they not make some device that realises a viewer has gone to sleep and starts automatically recording the rest of the programme?"

They have invented this. They can be very expensive , temperamental, and difficult to find- a spouse.

Lol. :biggrin1: Very hard to keep as well, I know and failed. :crying:

Jim

[delorisdoe]

I'm curious about that too...:unsure:

Al and christina, that is a picture of danareys stormborn , house of targaryan, mother of dragons. she is my favorite character in the novels The game of thrones and is also my favorite in the show. best books ever

[me2]

Leigh, thanks for the tag line. I've been under the weather for a very ,very long time and just in recent times coming out some. Much of music that I used to enjoy became for years became too painful to listen to. When I read your tag I thought "Boy that reminds me of a song I used to listen to". Well, I found it and I have the album Throwing Copper and I can listen to it again.
I have been dredging up old albums that I am now able to listen to again and I love this one. Thanks.

Forces pullin' from the center of the earth again.
For a long time it felt like I was going to be pulled off.
Live - Lighting Crashes - YouTube (http://www.youtube.com/watch?v=TOUdKsCHDnc)

[delorisdoe]

Leigh, thanks for the tag line. I've been under the weather for a very ,very long time and just in recent times coming out some. Much of music that I used to enjoy became for years became too painful to listen to. When I read your tag I thought "Boy that reminds me of a song I used to listen to". Well, I found it and I have the album Throwing Copper and I can listen to it again.
I have been dredging up old albums that I am now able to listen to again and I love this one. Thanks.

Forces pullin' from the center of the earth again.
For a long time it felt like I was going to be pulled off.
Live - Lighting Crashes - YouTube (http://www.youtube.com/watch?v=TOUdKsCHDnc)

I think this may be my all time favorite song.

[Al]

Al and christina, that is a picture of danareys stormborn , house of targaryan, mother of dragons. she is my favorite character in the novels The game of thrones and is also my favorite in the show. best books everEr, I guess that answers my question, Leigh. Problem is, I still don't get it....

Al

[pberggren1]

The Game of Thrones is a very popular new book series. I think there are 5 books in the series so far. And it is made into a popular television series as well.

[delorisdoe]

Er, I guess that answers my question, Leigh. Problem is, I still don't get it....

Al
Right Phil except the books are old but just getting popular. Al, I am unsure of your confusion but I will take a stab at it...danereys stormborn is my favorite character in a novel ever. She is beautiful, strong and passionate. I have not finished the series but my hope is that she wins " the game of thrones". She is the strongest female character ever. She overcame a lot of adversity and is nobody's fool. This is a picture from the show from the last scene of the first season. She has just walked out of a fire and that is one of her three dragons. Too much information. Bet you wish you never asked.

[pberggren1]

How old are the books?

[Dryhill]

Must look for this series, I go through books mat a fantastic rate while sitting waiting for the next fare. I am just re-reading the Sharp series by Bernard Cornwell, it is mostly aboiut the Napoleanic Wars.

Jim

[delorisdoe]

I have a death of kings on my reading list...is Bernard cornwell good. I got the first four books on line from a books store site in a box set for 20 bucks. They are long books. Kings queens, dragons everything and lots of war as well. Phil the first few are 20 years old. The 5th is new and 2 more are comming out. As a side note I would normaly never read anything fantasy but I love this series.

[Sangye]

This was on FaceBook recently. :biggrin1:


1582

[delorisdoe]

Omg sangye I don't like that I love that. It is soo true. Have you read the books or do you just know of them as that is perfect. Lol. I'm saving that to my Facebook right now. Thanks.

[Sangye]

LOL I'm glad you liked it! I haven't read the books so I don't fully get the joke. But it's still hilarious. I got it from George Takei's FB page. He posts really funny stuff.

[delorisdoe]

This author makes you fall in love with a main character and then kills them-but sometimes they are not dead or maybe they are

[pberggren1]

Has anyone read Mary Stuart or Patrick O'Brien?

[delorisdoe]

Not me. What kind of books are they

[marta]

They could have just asked us, you know....

Al
I tell them but they don't LISTEN. They hear but they don't understand.
I have been telling my doc about how debilitating the fatigue is and all he does is give me a blank look - until my last visit where he gave me some sage advice. "You should exercise 20 minutes a day"

If I could exercise 20 minutes a day and still have any energy left over I wouldn't be complaining about fatigue. I have to save my energy to do "20 minutes of laundry" or "20 minutes of housecleaning". Most days I don't even have that.
This pencil necked , noodle armed choir boy (I'm stealing that line from the Simpsons) couldn't last 20 minutes doing the heavy physical work I did for most of my life. Like stocking cabinets in new buildings up several flights of stairs. Digging ditches by hand around high voltage lines. Cutting my years worth of fire wood every year.

For recreation I did mountain climbing - real mountains (the Olympics here in Washington state). To the top and back home in one day. Med-boy wouldn't have lasted 15 minutes trying to keep up with me on the trail and he treats me like I'm some fat lazy slob that doesn't know enough to exercise.
Ok, I'm mad enough now I still think I could take him on a 20 minute challenge. Problem is , I would be out of commission for several days and he wouldn't. Do you think he knows that?

I so get this! I'm also very glad to see this thread as misery loves company as they say. I'm so sorry you're all feeling this but it gives me comfort that this is a 'normal' thing and not something that I need to address any further. Last time I wrote on the forum I was completely beat down and feeling almost as bad if not as bad as when I first got sick. The level of fatigue was profound. I love Kirk's post because I remember just before my lung surgery the anesthesiologist was doing his regular questions, and he asked me if I could go up a flight of stairs... I was shocked with the question because prior to getting sick, I was a very strong puppy ( I also live in the mountains - The Rocky Mountains - and have looked down from quite a few peaks after getting to the top using various modes of transportation - ski skins, bikes, hike, jog....) I asked the doc if he was referring to me getting up the flight of stairs at that moment or a few months earlier. He said earlier to which I replied " buddy, I could crush you going up those stairs" - cuz I could have. It was one of those magic moments from the early days - one that still makes me giggle when I remember the look on his face when I said that.

Today is a different story. I'm much better than I was a few weeks ago, but I'm still a lump on a bump on a log. I've just gone down from 6mg to 5.5mg and am dreading the big whallop I got when I went from 7mg to 6.5mg - but so far so good. I hope that doesn't get misinterpreted as huberis by the gods - I'm just thinking of it as very good luck so far and hope I don't jinx myself.

Thanks for this thread and sharing your woes to make all of us stronger together.

[Sangye]

I did the exact same thing to my diagnosing doctor! I was in great shape until Wegs hit. Every morning I hiked many miles in the mountains, came home and did an hour of yoga, and then went to work as a chiropractor-- very physical job. Sometimes I walked or biked to work, too.

It didn't help that I was on 1,000 mg solumedrol (1,500 mg pred) at the time when he asked about it. When I look back on it, I remember my reaction with embarrassment. I had NO idea the effect the pred was having on my mouth. :biggrin1:

[marta]

I did the exact same thing to my diagnosing doctor! I was in great shape until Wegs hit. Every morning I hiked many miles in the mountains, came home and did an hour of yoga, and then went to work as a chiropractor-- very physical job. Sometimes I walked or biked to work, too.

It didn't help that I was on 1,000 mg solumedrol (1,500 mg pred) at the time when he asked about it. When I look back on it, I remember my reaction with embarrassment. I had NO idea the effect the pred was having on my mouth. :biggrin1:

:w00t: I wish I could blame pred for my mouth, but it's been a problem way - waaaay - before I got into a relationship with pred. That's why my mom and dad always call me when they need an angry letter written to someone who has wronged them. Usually what I find funny might be out of the funny parameters in the normal world. I was trying to be funny when I said that to the doctor, and I think after talking to me for a while he got my whacked sense of humour, but his initial look was hillarious, to me anyways.

[pberggren1]

Not me. What kind of books are they

Mary Stuart writes a series of books about King Arthur and Patrick O'Brien writes a series of books about A British sea captain and his doctor during the Napoleonic wars.

[freakyschizogirl]

:w00t: I wish I could blame pred for my mouth, but it's been a problem way - waaaay - before I got into a relationship with pred. That's why my mom and dad always call me when they need an angry letter written to someone who has wronged them. Usually what I find funny might be out of the funny parameters in the normal world. I was trying to be funny when I said that to the doctor, and I think after talking to me for a while he got my whacked sense of humour, but his initial look was hillarious, to me anyways.


I was always abrupt with Doctors because i got so angry at them wasting my time when i came back to ENT every few months for them to tell me it was my weight, all in my head or nothing they could do for me. When i got diagnosed i did my research and found my voice cos i didnt wanna be fobbed off again - all this before the pred kicked in! When the pred did kick in i begged every doctor - rheumy, GP and chest consultant to send me for a second opinion at Addenbrookes - best thing i ever did! I've always had a knack at getting my own way :glare:

[Dryhill]

I was always abrupt with Doctors because i got so angry at them wasting my time when i came back to ENT every few months for them to tell me it was my weight, all in my head or nothing they could do for me. When i got diagnosed i did my research and found my voice cos i didnt wanna be fobbed off again - all this before the pred kicked in! When the pred did kick in i begged every doctor - rheumy, GP and chest consultant to send me for a second opinion at Addenbrookes - best thing i ever did! I've always had a knack at getting my own way :glare:

Way to go Sam.

I had been feeling really tired and worn out for several weeks and after finishing work on a Saturday night (an early finish that night - around 2am), my boss comes on the phone and tells me he does not me to return till at least the next Thursday and to get myself better. On the Monday I saw one of the GP's at my local surgery and he tells me it is all my fault because I am so overweight. Two days later I am coughing up blood and have my first ever nose bleeds, the next day I am in hospital on four litres and hour oxygen. Five days later diagnosed with some styrange unheard of disease named after some German doctor. The surgery cannot understand why I would rather die than see that so called GP!

Jim

[Dryhill]

Mary Stuart writes a series of books about King Arthur and Patrick O'Brien writes a series of books about A British sea captain and his doctor during the Napoleonic wars.

I like Patrick O'Brian, if you like naval stories then you are in for a good read.

A lot of early 19th century naval stories are based on a real chap called Thoams, Lord Cochrane, 10th Earl of Dundonald. Where Admiral Nelson was brilliant with a fleet of ships Cochrane was as good if not better with just four ships.

Jim

[Lightwarrior]

The tiredness people with ANCA-associated vasculitis (AAV) experience is a greater cause of poor physical health than any other side effect of the condition, researchers in Aberdeen have concluded.

Their research will confirm what every person with a vasclitides know first-hand; that the fatigue caused by vasculitis has far reaching consequences into every day life.

Hooray at long last someone has realised how bad fatigue can be. The researchers at the University of Aberdeen have written an article in the UK journal Rheumatology, basically urging doctors working with us weggie sufferers to take time to recognise and evaluate fatigue. They finish by stating that a better understanding of the mechanisms of fatigue are needed to support the "new generation of AAV patients where long-term survival is considered the norm and issues related to quality of life take precedence"

For me the constant fatigue is one of the things that really gets me down, I do not have a big lawn but I have to have several rests when cutting it. Luckily my job is just sitting down driving a car, I do not know hbow I would cope if I had phsically strenous work. Any one got any comments or views?

Jim

I am a nurse, luckily I have an office and my time in the unit is spent on a scooter. I can't even walk most days from my room to the kitchen without being short of breath. If I had to take a team of patients I would have to quit. So far I have been lucky because I am paid for my brain, Some of the drugs we have to take impact our ability to think clearly all of the time. I don't know what I will do if that happens, or if Administration changes and decide that I am not worth the trouble??

[Dryhill]

I am a nurse, luckily I have an office and my time in the unit is spent on a scooter. I can't even walk most days from my room to the kitchen without being short of breath. If I had to take a team of patients I would have to quit. So far I have been lucky because I am paid for my brain, Some of the drugs we have to take impact our ability to think clearly all of the time. I don't know what I will do if that happens, or if Administration changes and decide that I am not worth the trouble??

That is always the trouble when an organisation gets too large, someone remote from the actual "coal-face" makes a decision purely based on finacial benefit or ease of operation. The fact that human beings are being effected is not taken into consideration - fingers crossed that all stays ok for you.

Jim

[pberggren1]

I like Patrick O'Brian, if you like naval stories then you are in for a good read.

A lot of early 19th century naval stories are based on a real chap called Thoams, Lord Cochrane, 10th Earl of Dundonald. Where Admiral Nelson was brilliant with a fleet of ships Cochrane was as good if not better with just four ships.

Jim


I know O'Brien based his novels on actual journals from a captain and his crew back then. Do you know if this Cochrane fellow is him?

[drz]

Has anyone noticed a change in their fatigue with season changes? Does the longer day and increased sun improve anyone's energy level? I know for me hot humid days are really tough but we have not had many of those so far this year?

[Dirty Don]

Has anyone noticed a change in their fatigue with season changes? Does the longer day and increased sun improve anyone's energy level? I know for me hot humid days are really tough but we have not had many of those so far this year?

I've been interested in that also as I'm in the desert. The heat is starting here, minus the humidity though. So far I've not been terribly affected by the heat alone. As to humidity, when I started the WG last year I was in Florida and the humidity, in retrospect, was overwhelming, moreso than it had been before. I owe that to the 'flare' activity that was going on, but I wasn't on any drugs at the time either. Someone says not to be out in the sun much, but outside of the usual risks (skin cancers, etc.), I've not noticed any reduction in activity & no increase in fatigue. Whatever, as long as I shoot well in golf!! LOL!

[Sangye]

I'm always much worse in heat and humidity. I feel more energized in cold weather.

[freakyschizogirl]

I'm always much worse in heat and humidity. I feel more energized in cold weather.

I'm opposite to you Sangye - feel stiff and tense in the winter and more spritely in the summer. Need the Vitamin D!

[Al]

I'm always much worse in heat and humidity. I feel more energized in cold weather.Same here....