down in the dumps

[greenjanet]

i know i should be thankful im still here, but I feel terrible, i have had so many operations hysterectomy ovarys out ect ect , i didnt need any more. then come wegs.

i have put on weight.

i have problems in my lungs, sinus. not major

i feel tired, weepy, dont want to get out of bed

i just cannot be bothed to do anything even to get up and shower yuk

thank janet

[mishb]

Hi Janet, I am so sorry you are feeling this way......it's such a sucky illness.
I lost track of the post where you said that we should catch up for coffee……and yes, we should.
Know that you are not alone on this roller coaster ride that you have found yourself on. We are all (each one of us) on the ride with you. We will be there for you for all of the ups, downs and sideway twists and turns.
Maybe you should talk to your GP and let him/her know how you are feeling and maybe get a referral to a psychologist who you can talk over your worries with. My daughter is studying to become a psychologist and she says that talking really helps. She also suggests meditation and yoga as a release.
I know this message is not going to ease the tears or take away the pain and the crappiness of this illness but remember that it doesn’t matter what time of day (or night) it is……..someone will always be on this forum to give you a listening ear or some helpful advice.
Take care of yourself, sit back and rest until you feel you can do some more and most of all ………..

[Dirty Don]

i know i should be thankful im still here, but I feel terrible, i have had so many operations hysterectomy ovarys out ect ect , i didnt need any more. then come wegs. -you're HERE for them at least...

i have put on weight. -better some weight than dead weight...

i have problems in my lungs, sinus. not major -to breathe or not to breathe, that is the real question...

i feel tired, weepy, dont want to get out of bed -you have that choice...

i just cannot be bothed to do anything even to get up and shower yuk -why would one 'bother' themselves over something like WG?...

Is your cup half full or half empty today? Thanks for venting, it's important Janet...just make sure you work your way thru it cuz YOU CAN!!!

[annekat]

Janet,

I am taking a low dose of Zoloft (anti-depressant) each day.... don't know how much it helps, but it could be something to look into, along with other advice given above. I know there is a lot I could do that I'm not, such as walking, yoga, meditation, eating better, etc. Just keeping busy with something you like helps, be it gardening, a craft, whatever. I know some days there isn't enough energy to do much of anything... in that case, enjoy your rest. Things will get better. I know I'd be a LOT more depressed without this forum. I'm so grateful for it! And DO get out and connect with Michelle for coffee..... I'm sure it will help!

[freakyschizogirl]

i have put on weight. -better some weight than dead weight...

i have problems in my lungs, sinus. not major -to breathe or not to breathe, that is the real question...




Oh Don, you really make me laugh! The first line made me think of that old joke about how do you lose dead weight? Divorce it.

Hahahaha!

greenjanet you are not alone. That is something that always makes me feel better. When i need to vent or talk Wegs stuff that normal people dont understand i always find myself on here. Talking is definitely the best therapy.

I hope you start to feel better soon :hug2:

[greenjanet]

THANKS i feel better i find when i feel better i overdo things then the next day yuck, a boss years ago said how to loose 5kgs of ugly weight........ chop off your head hahaha. i could sue him now thank you dirty don.

[greenjanet]

thanks i went to dr this morning my blood test is white cells 11.7 neutrophils 9.8 s crp 6 sodium 146 anion gap 23 ggt 43 alt 41 ast 46 t protein 85 albumin 48 how do these go must go the bold and the beatiful is on thanks i feel happier today x

[mishb]

thanks i went to dr this morning my blood test is white cells 11.7 neutrophils 9.8 s crp 6 sodium 146 anion gap 23 ggt 43 alt 41 ast 46 t protein 85 albumin 48 how do these go must go the bold and the beatiful is on thanks i feel happier today x


My white cells, neutrophils and crp are a little higher but the rest are even par(ish).
I'm glad you are feeling a little more like yourself today.
The bold and the beautiful, hey......seriously. I think you need to go back to bed :flapper:

[Dirty Don]

THANKS i feel better i find when i feel better i overdo things then the next day yuck, a boss years ago said how to loose 5kgs of ugly weight........ chop off your head hahaha. i could sue him now thank you dirty don.

NOOOOO lawsuits! I know nothing, I see nothing, I have nothing!! LOL! Glad you're feeling better today and that you got to the doc...it's one heckuva rollercoaster ride, but I always come back to: the price of the ticket was cheap, so just hold on! LOL! Good for you Janet! Go watch your soaps! OMG!

[Sangye]

Janet, I'm glad you're feeling better! Keep an eye on how often you feel really down like that, maybe jotting down a note in a daily log. It sounds like clinical depression to me. I highly recommend working with a therapist as you navigate through life with a chronic illness. If you've been on pred or are on it now, it can really mess up your brain chemistry and cause depression, anxiety and bipolar syndrome. Those imbalances only get worse if they're not addressed. A good psychiatrist can help.

[greenjanet]

thank you i will mark it down on my diary

[greenjanet]

i love your replys i only have one soap thank goodness

[KathyB]

Hi greenjanet --- I think we all go through a sense of frustration, lack of control, and perhaps depression. I went from a go-go-go to a no-no-no lifestyle. Forced to retire from my dream job because I could no longer keep up. Contemplating what to do with my life. Considering what talents I have to share with others. Trying to figure out how to survive on a paltry income. It's very depressing and stressful. Al's passing has iced the cake. So how do we rebound and get back to living? I'll be trying to figure this out. I know it will start by counting my blessings and hugging my loved ones! Hope things improve for you, too. I am thankful for my WG buddies.

KB

[drz]

I am sure most of us have heard the comments and compliments about how great we are for maintaining our positive outlook, good sense of humor, courage, fighting spirit, resilience, and other things intended to help us feel better about how we cope with our illness. I know it was hard for me to really take such comments to heart or feel those things really applied to me or that such traits and behavior were unusual in any way. After all we just have to deal with the things that happen to us. Right? When I read about someone else coping well with a tough situation, I know they merit such commendations and compliments. When I read some of the things I wrote shortly after my diagnosis, I was impressed, and now sort of believe those compliments were valid and sincere. So if those nice things were true for me, I am sure they apply to you.

Therefore you are awesome and amazing and displaying great strength and courage to be handling things so well and doing what you need to do to survive and to make the best life you can with what you have to work with. Maybe focusing on what great job you doing might help you feel better. I think we all deserve a big pat on the back and large group hug.:hug3:

[freakyschizogirl]

Had to revive this thread as i am feeling majorly annoyed today for no real reason.

Have to admit i've stayed away from the forum for a while after Al's passing, it gets too hard sometimes. I wish i was a stronger person and could cope the way so many of you do. I am complimented with having a good sense of humour and for coping well with a disease no one can see or understand.

But i break down sometimes and get depressed some times, like today. Nothing major has happen but i went from being happy to being very annoyed and subsequently i've scared Stu off home for the evening. Feels like a pred rage cos i cant snap out of it and i kinda look in at myself and see me getting angry but i cant stop it.

Why am i crying?

I spend a good majority of my life putting on a good show for people that i'm brave but the thing is behind that i'm a little girl who wants to hide under the duvet to come out and find out it was just a bad dream.

You'd think after nearly 3 years i'd be better able to cope. I wish i was a stronger person.

[drz]

Had to revive this thread as i am feeling majorly annoyed today for no real reason.

Have to admit i've stayed away from the forum for a while after Al's passing, it gets too hard sometimes. I wish i was a stronger person and could cope the way so many of you do. I am complimented with having a good sense of humour and for coping well with a disease no one can see or understand.

But i break down sometimes and get depressed some times, like today. Nothing major has happen but i went from being happy to being very annoyed and subsequently i've scared Stu off home for the evening. Feels like a pred rage cos i cant snap out of it and i kinda look in at myself and see me getting angry but i cant stop it.

Why am i crying?

I spend a good majority of my life putting on a good show for people that i'm brave but the thing is behind that i'm a little girl who wants to hide under the duvet to come out and find out it was just a bad dream.

You'd think after nearly 3 years i'd be better able to cope. I wish i was a stronger person.

Most people wish they could better, even if they are are doing extremely well given their circumstances. What dosage of pred are you on? I know it can really miss with your emotions and make you wonder what is going on and to also wish you weren't so emotional. My thinking generally is that if you don't experience some depression from the losses related to this disease you are either in denial of reality or still having a pred induced euphoria, sort like being in la la land but when it wears off you feel like you crashed and burned. Have you had any professional psych help to help adjusting to this great GPA gift we share?

[Pete]

Hi Freaky!

If you're having only the occasional down day, you're probably coping pretty well. Admittedly, I don't have formal training in the behavioral sciences, but a thought that helps me is, "Every day is a good day. Some days are better than others!"

Pete
dx 1/11

[freakyschizogirl]

Thanks Pete, that made me smile. I dont think i cope that well.

Jan i probably do need a few Psych sessions. I was seening a counsellor for a while but she had pretty much no idea how to help me so i stopped going. I will ask when i next go to Adds. I dont think i'll ever come to terms with this.

[pberggren1]

Stop faking it. You will probably feel better if you don't. I never try to do things when I feel like crap and I know I will pay for it dearly the next day. Talk about this with Stu. That is what he is there for. Open up to him about how you feel about all this. It will help, trust me.

In the meantime, eat lots of cookies.

[Dirty Don]

I dont think i'll ever come to terms with this.

BOO! Come out from behind that duvet...now. Face me, look at my eyes, well OK, look up at my eyes, I'm taller than you. SMILE AT me, no, not for me, AT me, make me think you're happy to see me...it's OK to pretend, I don't know any better. Don't turn away, I'll still be here...I don't go away easily...frankly I can't...I am you and you can't run from me.

Psych 101: find the issue, see the issue clearly, confront the issue, know that the issue causes problems, chip away at the issue, find it's weak and non rational points, replace those weak points with rational ones (yeah, it's your brain, mind, body, heart...so what, it still has issues...we all do), apply those rational points, if you fail do it again...and again...and again...

Dark begets light, light begets dark, it's a cycle, we're caught up in it...no way out...so we must make the best of what it is...Pete is right...only the best to you m'dear!

[carriej22]

I find I go all over the place - some days I feel lucky and blessed. However today I did have a breakdown. My husband is probably going to have to move away for work (28 days gone, 14 days home) because with me not able to work as much, our income just isn't enough (house, cars, you know the drill) for what we have. I'm very frustrated, because darnit.. All I want to do is be self sufficient and be able to work and not kill myself doing so. My last shift at the shop had me questioning whether I was going to be able to do it for much longer. I have to take the elevator now to get into the shop rather than the stairs. It's embarrassing and degrading.

What's even more sickening is I still owe like 14,000 on student loans, so even if I stop working.. I still need to pay for that. Such a waste :(

I know I just get tired of being sick. One day I want to wake up, and not have to worry if I forgot to take a pill (Im 22 years old, I never had to take pills...) and not have to worry about going somewhere and having to leave because I don't feel well. Heck, I'd love to be able to go out for drinks with my friends on the weekend or even just have a glass of wine with dinner with my husband. This disease has stolen everything from me, my body, my health, my confidence, my spirit, some of my hobbies... It has taken a lot from me.

I hope to someday get it all back, but it's going to be a really annoying road. People keep telling me it hasn't even been three months yet... But I can't help but feel frustrated.

[mishb]

It is a long road indeed.

Look at you though, you are gorgeous.....such lovely photo's you always put up :drool:

You are 22 years old, you have a loving husband, a house, cars, a massive fish tank, jobs.........everything we all want in life........it has to be the best, and you are one lucky girl to have all of this at such a young age and you obviously have a very good head on those shoulders (some may even say .....wise and older than your age belies)

But you are not well. This is the sad fact and yes it will take a lot from you both physically and mentally. You have to give yourself some time to get through this.
You may need to set a pace that you can cope with........ don't let people push you. Maybe that means working, but only at hours that wont kill you.
A few little baby steps will help to bring you forward.........big giant steps may send you backwards.

There will be that one day for you and it may be sooner than you think.
You have come an exceptionally long way from the girl who was so sick, she couldn't even walk.

I say, congratulations to all you have done and achieved so far, and for the other stuff, I'm sure it will all work itself out.

[annekat]

You both have every right to feel the way you do, Freaky and Carrie, and we are here to listen to all of it gladly. Don is right about cycles, dark begets light, etc. I've been feeling down lately, too, and got a little crabby with people today. I know I'll feel better after a night's sleep. Rest is so important to us, so make sure you allow yourself plenty of that, and let people pamper you if they are so inclined.

Carrie, about the 3 months, all I can say is that hasn't been much time for your Wegs to get a lot better, but you could see some big improvements in how you feel in the next 3! I hope so. That's what I experienced, and then it kept getting better from there.

Sorry about the other bad news, your hubby's work, etc., and I don't blame you for falling apart over that!

[Dirty Don]

Good step forward Carrie...really good step...keep on keepin on!

[freakyschizogirl]

Nope, sleeping didnt work. Woke up today feeling as crouchy as yesterday. Feel like a bear who's been woken up in winter.

Hate feeling like this. And the one person i should be talking to (Stu) i dont want to talk to. Think i've either upset or scared him cos he hasnt texting me today.

I dont know whats wrong with me. I'm sad, depressed, angry, upset, scared, annoyed, emotional, wanting to cry...but most of all i want a hug. And the worst thing is its come from no where really. I wanna scream and cry and i dont fully understand why. Everything seems so dark at the moment. :mad1::confused1:

[Psyborg]

To be honest I had to get on anti-anxiety drugs after I started prednisone. I was ok a lot of the time, but when I had a mean mood hit I Had absolutely zero self control. To the point of seeming like I was watching in third person thinking "what the heck is so upsetting?". So I can totally empathize with what you said about that. On top of that it really took a big chunk of the other issues with depression and anxiety and reduced those as well. I think it's at least worth inquiring with the doctor about.

I think I should preface also that I'd always been pretty against mood adjusting drugs, but the reality is that I'm alot easier to live with for my family when taking them.

[Dirty Don]

the reality is that I'm alot easier to live with for my family when taking them.

Better living thru modern chemistry...been on Lexapro for years...it has made life better, believe me!

[freakyschizogirl]

I'm on amitriptyline which is a mood drug but its also taken (for me anyways) to stop neuralgia.

Feel like i'm having a mini break down to be honest. Thoughts keep spiraling and i dont know why.

[annekat]

I'm on amitriptyline which is a mood drug but its also taken (for me anyways) to stop neuralgia.

Feel like i'm having a mini break down to be honest. Thoughts keep spiraling and i dont know why. I was on amitriptyline for several years, long ago, for trigeminal neuralgia, which eventually went away. Interesting drug. It slowed me down quite a bit and caused dry mouth. Not sure what it did for my state of mind. It did help the neuralgia, for sure.

Now I'm on a low dose of Zoloft, actually the generic, sertraline, for anxiety and depression. I didn't think it was doing much but then I ran out of it and noticed a difference, more touchy emotionally, teary, etc. Think I might get the dose upped a little.

In any case, you you've been feeling this way for several days, it seems, and maybe time to get some help from a doctor. As for hugs, the best we can do on here is this: :hug2:

[Psyborg]

I'm on celexa right now. I tried to quit about the time I flared...don't know that it wasn't semi-related to be honest. But my mood went wonky pretty quick.

[Lightwarrior]

I'm on amitriptyline which is a mood drug but its also taken (for me anyways) to stop neuralgia.

Feel like i'm having a mini break down to be honest. Thoughts keep spiraling and i dont know why.

I'm on Cymbalta and my kids wonder if it is enough. Carrie and Freaky, the feelings you have are all very normal for an abnormal situation, Lets face it, there is nothing normal about having Wegs and one of the hallmarks of this exclusive club we belong to is that the Weg dog is one sneaky, mean blankety blank. We have the right to feel frustrated and even angry. I remember Jack telling me that I needed to quit trying to be normal and adjust to the new normal because that was the way it was going to be. Those words at that time helped me. But...neither of you are me and those words may or may not be helpful to you.

I do think that both of you are close if not already in more serious trouble and need to not only be medicated but talk to a therapist. Talk with a professional is some of the most powerful medicine there is. I wish you could feel the love and warmth that I am trying to send you with every fiber of my being and yet I understand that you need those close to you to send you that love and warmth. Here is my hug not only to the two of you but to all of us.

:hug3::hug3::hug1::hug3::hug3::hug1:

[freakyschizogirl]

Thanks Lightwarrior, I feel the warmth.

I've been to my GP today, she looked at my throat and said it looked like a virus, been told to rest, drink lots of fluids and take paracetamol. Second virus in a month, I'm a collector.
While there I asked her to refer me to a psychologist, since I tried counselling last year and it wasn't effective for me. I told her I was struggling at the moment and had tears in my eyes.

I miss Jack's wisdom and direction, he offered me a lot of help when I came on the forum.

Thanks to those of you on facebook telling me I'm strong when all I wanna do is lay in bed, cry and scream and just give in. It is helping, I don't feel as bad as yesterday but not out of the woods yet.

[Lightwarrior]

Freaky, You may not be out of the woods but at least you know that you can pull us in there with you to keep you safe.

[AmyA]

I'm so glad I found this thread! I've been feeling all over the place lately. I have 2 new pharmacist at work and while they are great, having to re-explain my story to them is frustrating. I run into the same thing, "well you don't look sick". I work really hard and on my feet. Some days I just want to sit and cry. It's so hard to explain this disease to other people who have no idea what I'm feeling. And while I have a note from my doctor to sit more often, I don't have co-workers or pharmacist who let me partake and when I do sit, I feel guilty. It's a daily battle. I'm lucky I have a wonderful husband who is always making sure I'm taking care of myself and helps me do so. I just need to find a balance at work so I don't come home in so much pain and full of frustration and stress.

[greenjanet]

hi amy i printed up copies of wegs off the internet and gave it to my friends not sure they understand, i feel very tired all the time, i have
pain from nerve damage having a hysterectomy and never were able to have children. so im doubly sad. do you take it easy
on the weekends and after work..... i send a big cuddle and stay calm xxjanet

[freakyschizogirl]

I have some leaflets that Vasculitis UK sent me called understanding vasculitis. I'm starting to hand them out cos although a lot of my friends and family know what I have I don't think they get how serious a disease this is.

[pberggren1]

I know exactly what you mean Sam. I think only my parents realize how serious this **** is. Most other friends and family don't really have a clue what it is all about. My cousin's wife could not understand why I was not working. I told her there are too many issues that pop up each week and then there is the coughing up of mucus and SOB and fatigue. She still didn't get it. She said I should be working, there is nothing wrong with me. I am cured.....lol.

[KathyB]

It's comforting to understand we are all not alone in our feelings. Yesterday I spent an hour on the phone talking with a clinical psychologist from my insurance company about this disease and allowing those scary thoughts to be verbalized. I want and need to talk with others about the sense of loss I feel in my life and finally ready to arrange some longer term consultations/sessions. I still rely on you all in this forum, too. Thank you.

KB

[Lightwarrior]

I'm so glad I found this thread! I've been feeling all over the place lately. I have 2 new pharmacist at work and while they are great, having to re-explain my story to them is frustrating. I run into the same thing, "well you don't look sick". I work really hard and on my feet. Some days I just want to sit and cry. It's so hard to explain this disease to other people who have no idea what I'm feeling. And while I have a note from my doctor to sit more often, I don't have co-workers or pharmacist who let me partake and when I do sit, I feel guilty. It's a daily battle. I'm lucky I have a wonderful husband who is always making sure I'm taking care of myself and helps me do so. I just need to find a balance at work so I don't come home in so much pain and full of frustration and stress.

Here is a fantastic link that helps explain exactly what you are talking about. Someone else on this forum posted it and I have used it with many of my friends, family and co-workers who didn't "get it". They usually do after reading Spoon Theory.

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[annekat]

Thanks, Light.... it's worth printing and I just did. I also bookmarked the main site, www.butyoudontlooksick.com . It looks like it might be worth exploring.

[Sangye]

I'm so glad I found this thread! I've been feeling all over the place lately. I have 2 new pharmacist at work and while they are great, having to re-explain my story to them is frustrating. I run into the same thing, "well you don't look sick". I work really hard and on my feet. Some days I just want to sit and cry. It's so hard to explain this disease to other people who have no idea what I'm feeling. And while I have a note from my doctor to sit more often, I don't have co-workers or pharmacist who let me partake and when I do sit, I feel guilty. It's a daily battle. I'm lucky I have a wonderful husband who is always making sure I'm taking care of myself and helps me do so. I just need to find a balance at work so I don't come home in so much pain and full of frustration and stress.
Amy, with the help of my therapist I've been learning how to take care of my own needs without feeling like I owe anyone else an explanation or making them understand why. Tune into your body throughout the day. Find what it needs-- a break, food, water, warmth, cool, etc... and give that to yourself with kindness and compassion. Many people don't know how to do this and wind up with years of anger and resentment at others for not "letting" them take care of themselves. Then they develop sort of a rebellious way of handling it, like "I'm gonna take a break and if you don't like it, then jump off a bridge." If you take care of yourself and respect your own needs, others will start to do the same. It really does work!

I want to emphasize that I'm still learning how to do this. It's not my habit yet. My habit is to try to get others to understand-- I need them to understand and have compassion for me. The habit thinks that then I will have compassion for myself, but it doesn't work that way. It's just a habit and every habit can be changed.

[Sangye]

Sam, I'm just seeing this thread (it's Catch Up Day). I am so sorry for what you're going through! :sad: I can empathize with all you're feeling. First off, have you tapered pred at all recently? Many times when I get like that it's due to pred being too low and/or from me doing too much for days and days and outrunning the pred dose.

I agree with the others that it's a good time to get a therapist and possibly a psychiatrist involved. (I'm opposed to any doctor other than a psychiatrist prescribing psych meds) I started with a therapist right when I got dx'ed and still go. I went once a week for 5.5 years and now go once a month. It's the best thing I've done for myself. I'm a lot like you-- sunshine on the outside, sad on the inside. Therapy will help you learn where that comes from and how to get your outside and inside to jive.

[freakyschizogirl]

Thanks Sangye, i've only just seen this!

I had a week on holiday with Stu and feel much better, things are getting sorted out at work and yes i had just tapered and now tapering again! On my last leg now tapering down from 2mg to 1! Eeek!!