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Jack
04-20-2009, 05:50 AM
If I had to pick one thing that has helped me through the past 24 years, it is having a positive attitude. Countless relapses, infections, complications and even a period of marriage break up have come and gone without breaking me down. I'm proud of it! However, I feel it is now taking its toll and I'm starting to struggle at times.
During the past two weeks, on top of everything else, I've had a lung infection. I changed my antibiotics and it cleared up, but they upset my already delicate digestive system to the point where I could hardly eat. I'm now getting over that one, but have an ear and throat problem instead. This is making swallowing all my medication difficult and I'm starting to feel sorry for myself. :(

Never mind! I expect I'll get over it after a while. :)
Trouble is, there are more steps backward than forward these days.

Thanks for listening. :o

Sangye
04-20-2009, 06:21 AM
I'm sorry to hear you're struggling with so much, Jack. I've had a difficult past couple weeks, too-- oddly similar symptoms and antibiotic issues.

I keep telling myself, "At some point, this is gonna clear up, too, just like all the past problems have. At some point, I'll be on the other side of this problem, just like I've done before." It's helping me get by. Maybe it'll be a little lifeboat for you, too. Hang in there.

coffeelover
04-20-2009, 07:39 AM
Jack,

I hate to hear that you are having some struggles. I believe in the positive approach as well and I get up every morning giving myself a pep talk. Then I get busy! Easier said than done at times, but necessary for me anyway.
I picked up the guitar and started taking guitar lessons. It gives me something to do that I never thought I'd have time for and it challanges me to continue to improve (even if my improvement seems slow at times). I sometimes have to force myself to practice as I would rather commiserate, but once practicing, I get that feeling of accomplishment and that makes me feel better.
I am just suggesting this becuase it works for me. Maybe, this is not your personality. But if you have the chance pick up something....knitting, art, guitar, piano or go to the neighborhood dog shoelter and volunteer to walk the dogs. (or bunnies if you will...) Iknow our community has plenty of avenues for outreach programs that I could volunteer for. (and I do!)
Please feel free to tell me if I am barking up the wrong tree. I know when you don't feel good, you don't feel like doing good either. Please keep talking with us. I will worry about you.
LIsa

Terri
04-20-2009, 10:58 AM
Hope things get better soon for you Jack.
I've noticed from reading what others have to say and noticed it to be true for myself, that stress seems to cause flare ups.
I give myself 5 minutes each day to cry,throw things across the room, or whatever makes me feel better for that time. Then I have to believe that God will shield me from the suffering or give me the strength to bear it.
On days that my feet hurt, I think of those who have no feet. That's being a little harsh I guess, but you know what I mean.
I've been feeling pretty bad myself and yesterday I was able to get out and roto-till my garden to get it ready to plant. I was thinking to myself how this disease keeps trying to put me down. I refuse to let it! As long as I can get in to my garden, mow grass or ride my 4-wheeler, I will, and no disease is going to take that away from me!:mad::p:D I love you guys!!!! That helps me too.

Jack
04-20-2009, 04:22 PM
I'm overwhelmed! Thanks for all your messages of support. :)

I wrote that post when I was feeling a bit low (as you may have guessed), but things seem better this morning.
I'll try to remind myself that my Wegener's symptoms are a bit like our British weather - if you don't like what you have, just wait a while and it will all soon change. :rolleyes:

I think I'll make a start on the "To Do" list today. I have hardly done anything for a couple of weeks and I know that it is not helping me to improve.

Thanks again.


EDIT - Admission! I gave myself a big one-off dose of pred yesterday. It probably explains why I'm feeling better today.
Yes, I know it's bad and I don't recommend self medication with dangerous drugs!:rolleyes:

Sangye
04-20-2009, 11:46 PM
I betcha you've been on the pred long enough to know how to use it safely--newbies shouldn't do that, but you probably have a good feel for how much to take. And if it keeps you in the game, then it worked! :)

Doug
04-21-2009, 11:09 AM
Jack- I'm happy you are feeling better! One theme we all seem to have in our group is a profound sense of the importance of a positive attitude and an understanding that we will always be heading to a "new normal". May you land on your feet! I promised myself I'd cool it on the smilies for awhile, but your feeling better forces me to break out the classic smiley: :)

Jack
04-21-2009, 03:52 PM
Had a good day yesterday - too good really because I ended up overdoing it! I'm planning on doing just one small job today and being a bit kinder to myself.

Gail
04-21-2009, 04:29 PM
Dear Jack,
I am glad you are having a better day today. It's a beautiful day here so I'm sending you some good Aussie sunshine and well wishes. Take care and keep smiling.
Gail :-)

Luce
04-21-2009, 05:31 PM
I'm having a duvet day today as well - my first day off sick from work since I went back in January.
Something (meds, food or a bug) has upset my stomach so I spent most of last night making friends with the lavatory and I'm shattered now.
Bit of a wake up call that I'm not quite as well as I like to think I am.

Enjoy your day everyone!

Carol
04-22-2009, 07:13 AM
Sorry Jack to hear about your low times. I have often advocated meditation on this site. Over Easter I visited my parents and forgot to take me meditation CD with me. By the 5th day I was getting very wobbly and tired. I realised that it may be lack of meditation. I mentioned it to my mum and she said she had a meditation CD I had given her ages ago. What a releif it was to go into a deep meditation again. I can do it without the CD BUT it never seems to have quite the benefit that this guided meditation does. SO ...... how about giving meditation a go - there's lots of guided meditations about - just find the one that suits you.
I also do a number of affirmations - one of them is .... "My blood is calm and happy" and I envisage blood cells looking this way. An affirmation is a positive statement that you say to yourself a number of times each day to imprint it on your sub conscience. Regards Carol - Australia

coffeelover
04-22-2009, 12:05 PM
Jack,

I am glad you are feeling better. I have not been online for a few days myself, but I kept thinking of you. Everyone had some good advice for those times we feel down. I tell ya, with me it does become a daily struggle.
Lisa

Cindy M
04-24-2009, 07:43 AM
Jack, I am so glad that you are feeling better. It is so much easier to just become sad and depressed and it takes work to make yourself look forward to things and have hope. It's amazing how now the smallest things will make me smile, like a clean house, a quiet evening with friends, or just a stress free day. Just keep smiling because I believe we are more happy to just be normal than to have the world at our disposal.

Doug
04-24-2009, 12:19 PM
:) Ladies- You forgot bunnies....! Seriously, I find caring for another living thing, whether a creature or a plant, a wonderful meditation, a calming thing. As spring settles in on the Northern Hemisphere, and garden centers start of fill with flowers and vegetables, I start of perk up. I don't have a pet just now because I still can't believe my remission will last forever. (I don't have any plan for who would take care of a critter while I "relaxed" in hospital. It's a worrisome possibility. I'd have me a cat otherwise. I live in a detached duplex in a retirement village, and a cat would work best in this environment.)

Sangye
04-24-2009, 12:42 PM
That's so true. If I didn't have my two dogs and bird, I'd be a sorry sight. I was so sick this morning and had to get up early anyway. While I lay there contemplating how on earth I was gonna do it, my little bird started singing and talking-- just filled my heart with such joy to hear him carrying on. I know my pain went down and my coping ability went up.

Doug
04-24-2009, 01:02 PM
I'm sorry you are feeling like crud again- still.

KtheC
04-24-2009, 09:17 PM
I have got to agree with Coffelover, starting a hobby is a a great idea! One of the things I have started appreciating is the time I spend with my wife. She is an avid photographer and likes to go places just to snap photos. Since travel is something I will probably never be able to do again this is the next best thing for spending time together.
As for hobbies, I have many and as before this kind of thing got on my wife's nerves, now she indulges me and pretty much puts up with whatever I decide to get into. Right now it's collecting local brewriana, Natty Boh, hon! Those Balmer peeps will understand that one. hehe
Having something else to focus on definitely helps get by things. Keep positive!!

Doug
04-25-2009, 12:52 AM
I have got to agree with Coffelover, starting a hobby is a a great idea! One of the things I have started appreciating is the time I spend with my wife. She is an avid photographer and likes to go places just to snap photos. Since travel is something I will probably never be able to do again this is the next best thing for spending time together.
As for hobbies, I have many and as before this kind of thing got on my wife's nerves, now she indulges me and pretty much puts up with whatever I decide to get into. Right now it's collecting local brewriana, Natty Boh, hon! Those Balmer peeps will understand that one. hehe
Having something else to focus on definitely helps get by things. Keep positive!!

I'd say you are dealing very well with the "new normal"! :):):):)
(When I was stationed in Germany in the early 1970's, my job took me all over the place, and I collected brewriana- all the new ones I could find at each place I went- .5l at a time. Haw! I couldn't handle that regimen again, but it was great fun being a "bier kenner" then.)