all those weary and tired of illness

[Mark N]

GardeniaGirl's post struck a cord that so many of us related to and it gave many people a chance to talk about the weariness we all feel at some point. It has had me wondering what is one thing that could relieve you of that feeling? What would it be; realistic things that can be done.

I know in my case once I quit trying to make my body fit a schedule and just accepted that I would sleep when I could doing what every I was able when awake the weariness left for the most part. Now this didn't happen until after years of doctors visits and surgeries finally becoming disabled. I wasn't able to do this when I was still working.

So what would help you get out of the weariness you are/were in?

[Kathi49]

Mark,

Hmmm...trying to think on any SPECIFIC weariness. Sure, I am tired of the conditions I have. But the weariness comes more into play with numerous appointments more than anything else. I am not so sure anything will ever relieve it totally since things are ongoing. But if I had to say, as far as stress reduction or getting a reprieve from it all would be in distractions. And I just mean maybe playing on the computer, watching TV, reading a book, taking a nap, socializing when I can...that sort of thing. So, I guess you could say those are realistic things....just finding things I am interested in besides housework which can really be trying and boring at times LOL! But since I am able to stay home I just kind of break things down into what actually needs to be done and then just take time out for myself...no matter what it is. It DOES help...at least I get distracted for a time. And of course if I am in major pain, I WILL lay down and try to kick it out through sleeping.

[gizmogirl]

homeostasis. Knowing that I won't have a meningitis like attack requiring days of recovery every few days.

[Jo6]

weary to the bone. I try to not make those around me suffer just because I do. there are times I can hardly get out of bed, but if I stay IN the bed the pain gets worse and I cry for the whole mess to go "Poof".

I should count my blessings, I do have many. I will try harder.*candy cane here, and enjoy:p

Yikes, what is that thing I thought was a candy cane, but it is actually some thing, I just don't know it. *fear So much for my good will wishes

[Mark N]

Kathi, glad to hear you have things that pull you out of the weariness. Maybe one day soon the doctor visits will become rarer and longer in between because I remember how tiring it gets.

gizmogirl, I hope that you are able to stop the attacks or find a way to stop them so you can get some relief.

Jo, I hope that some day soon you get what you need to push away the tired weary feeling. It is good to count all the blessings we still have but it isn't always easy to do. Thanks for the good will wishes no matter what candy showed up on the screen.

[GardeniaGirl]

My weariness is a soul-weariness.

It doesn't really have a remedy.

It is deeper than than the type that can be remedied by a TV show or something like that.

Little things take the edge off, and some days are better than others, but for me, I feel the disease has just pretty much taken a wrecking ball to my life.

[debhun]

Well That is a little hard for me. I guess it would be to live on a Island nice and warm all to myself no one to bother just me. No one would have to hear me complain again. Just me and my hammock and a few fishing poles

Deb

[BrokenBladder]

GG,
You hit the nail on the head with your description of how I feel.

I just don't know how to get the weariness to subside. Like Kathi said in addition to the pain there's the doctor visits and I usually have 2-4 per month and alot more appointments to other specialists that I haven't even made yet.

Depression is another ugly monster as well. I know I should see a Chronic Pain Specialist, but that will be another doctor that I would need to see monthy.

I'm open to any suggestions that will make all of this better.

[GardeniaGirl]

BB --- for me personally a key factor in this deep soul-level weariness is that the pain levels are just too high on a daily basis.

I had about 2 weeks in October when I was on a new med that brought my pain levels down at least 50% than what they are now.....and it made the "illness" stuff move more to the back-burner - and I felt like I could re-engage in life again.

I had to stop the drug due to side effects, and now, the pain levels are back up again.....

In my own case, I can identify a 1:1 correlation with high constant pain and feeling totally worn down to the bones.

Does that fit at all for you? Or are you still weary even when your major symptoms are controlled?

[Mark N]

GG, weariness of the soul is what I am talking about and you are right there is no easy remedy. There is life past the weariness even though it doesn't seem like it right now. I don't know what it will take for you, but as you pointed out in your post I have come to accept my disease and disability. I wish I could give you the something that would help but each of us has to find our own way.

Deb, I wish there were some way to give you your dream.

BB, not everyone can take the step I took. I got off the doctor merry-go-round after my decade of doctors and surgeries and just accepted my fate. I know that some illnesses don't allow that approach. It does get tiring to see a doctor every week or ten days over and over again. After a while it takes a toll on our souls.

[Kira]

I honestly don't know what I can do.

But this is a good post. Maybe I will think of a better reply later on.

[alex44]

Hi all - This is a subject I can relate to. I am tired, tired of being depressed, tired of getting a temp job only to get a phone call not to come in next week knowing they have the work, they just don,t want me there, tired of my S.O. bless her heart telling me i should not do this or that or feel that way, sorry, but tired of Christmas, wish it were over , and this from someone persueing a divinity degree ) I am working on becoming as Spiritual Minister _ would be ordained by now except for School and Church politics - that is ok though as I have been ordained by God - I am doing my first sermon soon, this keeps me goimg as the lord has called me, tired of pain, although that has been a little better with slight change in meds, sorry this is long but this is my Christmas rant - tired of so-callled friends that when the going gets rough they get going - Oh well, Tommorow is another day and god willing I will be here to see it and will thank Him if I am. God Bless and a Happy Holiday to all.
Alex44

[ejskennedy]

I'll make a confession: I look longingly at homeless people and sometimes wish I could be one. I am greatful for a home, food, warmth, clothes. But their invisibility, freedom and lack a responsibility look really good sometimes. Just the idea of feeling like if I somehow existed in that anonymous way I wouldn't let down my kids or husband anymore. I would only let down myself, which is much easier to handle. So being alone, no strings attached just me and my shadow....I know this sounds immature, but that respite from the crushing feeling of constant failure would help my weariness. Other than that, its denial. Just pretending I'm ok until I can't pretend anymore. Hmmm, maybe that's why I'm such a wreck?;).

Erin

[Mark N]

Kira, it is a long process and may take quite a while before you even know what is the biggest issue for you. For some it is the pain, others the disability pain brings, yet others struggle more with the change it brings in our lives, and on and on. It is a very individual process we go through as we deal with our life changing disease.

Alex, I have found that I can deal with today and the pain it brings but if I think of yesterday's pains or tomorrow's pain it is too much. You have hit on the only way for some of us to make it through.

Erin, one of the hard parts of our debilitating pain is the feeling that we are letting so many others down. It is such an insidious part of our pain because if we had another disease that disabled us so much not only would the people around us act differently but we would see ourselves differently. You can have that freedom once you come to terms with the true extent of your condition. Ours is an invisible disease which we need to recognize is as debilitating as any visible debilitating disease. We aren't letting your family or anyone else down any more that someone struck down with ________[insert your idea of a terrible disease or accident] is letting the people around them down. I hope you are able to work through this phase of our understand soon because it is a hard phase to be in.

[GardeniaGirl]

Just the idea of feeling like if I somehow existed in that anonymous way I wouldn't let down my kids or husband anymore. I would only let down myself, which is much easier to handle. So being alone, no strings attached just me and my shadow....I know this sounds immature, but that respite from the crushing feeling of constant failure would help my weariness. .

Erin

I have had the exact same similar feelings....

I am single, no children, and my brothers and parents are screwed up in various ways, so I am just not really close to any of them.

I think this reality is what leads me to feeling like I might want to explore my options for not living like this for the next 40 years.

I used to envy people who had their families around them, but I realize that means attachments and responsibilities and that can be a huge source of stress.

I have an old love from the past come back into my life and its looking like he really wants to be with me ---and I am feeling like I don't know if I want get involved with someone where they are gonig to be so affected by my health , etc. I don't want to let them down, limit the things they can do in their life, etc.

So....I am pullled in both directions...and only time willl telll how thigns go between us.

[Jo6]

I'll make a confession: I look longingly at homeless people and sometimes wish I could be one. I am greatful for a home, food, warmth, clothes. But their invisibility, freedom and lack a responsibility look really good sometimes. Just the idea of feeling like if I somehow existed in that anonymous way I wouldn't let down my kids or husband anymore. I would only let down myself, which is much easier to handle. So being alone, no strings attached just me and my shadow....I know this sounds immature, but that respite from the crushing feeling of constant failure would help my weariness. Other than that, its denial. Just pretending I'm ok until I can't pretend anymore. Hmmm, maybe that's why I'm such a wreck?;).

Erin

Hello Erin. If I didn't welcome you properly, then I am doing so now. I'm sorry for the reason of having to be here, but glad you joined us anyway.

First please let me assure you that I am not coming down on you or your thoughts. It just brought some very heart breaking memory's.

I had a nephew that didn't live far from me. He lived even closer to his parents, my sister and BIL. He chose to be homeless. For what ever reason I'll never understand. He didn't HAVE to be homeless.

In the spring of this year he was murdered by another homeless man. It was so senseless, it haunts me as well as my sister. I can not imagine having to deal with this every day of my life. I myself have had a very hard time dealing with the senseless of it all.

I had a point to make when I started this post. I don't remember what it was. Maybe it was family left behind that have to deal with the life choice of a member of their family.

Always wondering what they had done wrong, not handling life with their child as he grew up, so many questions. Heart breaking beyond belief.

As I said in the first part of this post was not to put anybody down. My nephew's life choice effected all that loved him.

This is from the other side of that inviting way to live. My heart still breaks and my sister, she will never be the same.

May God hold Steve in the palm of his hand. *cg13 Jo

[Mark N]

Jo, I know you weren't trying to put anyone down. I just wanted to say I am sorry you have to deal with this. We all need to know that our choices effect those around us and you had to deal with Steve's choice, then the man that killed him made those around Steve deal with the tragedy.

Erin, I also understand the feeling of worthlessness you were trying to portray. I have dealt with my wife going through this and no matter how much I loved her or our kids loved her she just felt worthless. I hope you work past this point of our condition soon. It is terrible to feel like that and I hope you don't have to feel that way too much longer.

[A.K.]

Erin,
I have never thought about wanting to be homeless but I have certainly had the very urgent feeling of fleeing while I still can. Just getting in my car and driving to somewhere that no one knows me and trying to start all over. At this point in my illness if my disability had been approved I just might do that but I am stuck because I have zero income and am far too ill to work.

I know I would be traceable but I am talking about leaving a note behind explaining why and letting the ones I love know that I was doing it for my own sanity so PLEASE not to come and haul me back and make my life even more miserable forcing me to watch them all have to wait on me hand and foot for 20-40 more years or how ever long this torture continues.

I think one thing that would help me would be to live in a group home with some of you and us all take care of one another. Talk in person instead of type our fingers to the bone. Have someone cheering you on outside the door when you are so constipated you think you are going to explode :D - and not think it's weird when your body needs 12 hours straight after being up for three days in excruciating pain. We could brush each others hair and play cards and oh well you get the picture......

[ejskennedy]

You know, the first thing I though of the morning after I wrote that post was to delete it. But I didn't and was almost too embarrassed to come back to the thread. But here I am.

gg--love is worth the risk. It's my fantasy to run away/be away/no responsibilities. But if I did, I wouldn't be able to share any "good days" with anyone. And there is something to be said for the power of love to bring out the best in someone. Don't get me wrong--it is exhausting and personally hard, but I am better off not left to my own devices :) .

Jo6
I am so sorry for your nephew and sister. It's terrible that you all have to live with only a memory. My post probably would have been more accurate/pc to just have said "run away." God's blessings to you.

Mark-
I am lucky that my "good days" currently outnumber my bad days. (new a.d.). I think I would feel better if I could get disability, but I'm still waiting to get denied. If we weren't so broke, the sting wouldn't be so bad. Maybe I wouldn't be so hard on myself. Thanks for always be so sweet and positive on the threads. You, my friend, are a real blessing :).

A.K.:
I am so sorry about your situation. Please know that no one would want you to leave no matter how much they have to wait on you:). If the situation were reversed would you want your loved one to disappear? Sometimes we have to let ourselves be loved as we would love our loved ones, no matter how hard, uncomfortable and vexing it is. We can all fantasize, so I do hope that is all you are doing. I will say prayers for your physical and mental comfort, A.K. Keep posting to let us know how you're doing.

p.s. Yeah, maybe Oprah could sponsor a house for us! We could all just show up for a week or so a month, take care of each other and recharge our batteries then go back and tackle real life!

((((hugs))))
Erin

[Mark N]

Erin,
The problem with our system is the people that administer the SSA and our congress people who pass the laws have a much plusher system than we do. If they had to go through the same process we do they wouldn't make us live broke before they okayed our disability. It's great to get back pay in a lump sum until you think about how much the money meant for all the years we waited on disability to kick in. Once you get approved it isn't too bad a system but why we have to wait so long is beyond me. I feel for your situation. I often wondered if my family didn't have my LTD how we would have survived waiting on SSDI to kick in. I am sorry you are still waiting for an answer especially knowing you will have more time to wait after they reject you [usual response the first time].

[Jo6]

there's no need to be embarrassed and feel you need to delete the post:)

I'm sure I've said that I felt like a "bag lady" many times. You had no way of knowing about my nephew . I wouldn't have known either until it touched my life.
So, please don't feel bad about any of that post. Thank you for the gracious reply you posted to me. Just keep posting and we will continue on with our fight with Chronic Pain.

take care, Jo

[A.K.]

Ditto,
I agree that you should not feel bad about previous posts. My goodness we have all posted and then wondered if it was the best way to say something or express or thoughts but those are the limitations of typing out our "feelings" sometimesl

As far as the skipping town - it is just a fanstasy - I won't really do it because I know it would hurt them too much but my theory is that if they would just 100% honest and realistic they would come to realize that placing me in an assisted living home would be beneficial to all concerned. I know it would certainly take care of all the guilt I carry around. That would be nice. A.K.