Feeling so sad : Feel like a prisoner in my... - Vasculitis UK

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Feeling so sad

LauraMk30 profile image
13 Replies

Feel like a prisoner in my own body...

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LauraMk30 profile image
LauraMk30
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13 Replies
Nadine99 profile image
Nadine99

You have to learn to do the things you can and don't bother about the other stuff. Do something, rest, do something, rest some more. Best wishes

LauraMk30 profile image
LauraMk30 in reply toNadine99

Hey Nadine99

Oh I know, I'm in bed with an inflamed spleen..

been a bad bed day.. seems like I complain a lot to the walls so thanks for the right advice of rest. X

saloshnaidoo profile image
saloshnaidoo

Please Dont feel sad....I've been diagnosed with takayashus disease since 18yrs old...I've been thru 2 by passes and 1 stent . I am also diagnosed with sarcodosis, -l (1999)gad mdr TB(2000) and pulmonary embolism(2005), currently on oxygen since 2005 and now I a 51 year old with 2-grandkids.....if I can YOU CAN FIGHT THIS!! Sending you prayers love hugs and undying support.....keep up the spirits!!

saloshnaidoo profile image
saloshnaidoo in reply tosaloshnaidoo

Please don't feel sad

LauraMk30 profile image
LauraMk30 in reply tosaloshnaidoo

Wow !! Saloshnaidoo.

Fair play you are a warrior !

I think I'll feel a little more balanced when I have some form of treatment.

I'm

Not taking medication or anything at the moment.. & it's just so difficult.

I'm in the woods as I haven't a firm diagnosis everything is strongly suspected. I don't like labels but I would like to know what this is so I can deal with it. I've read about your form.. & to go through what you went through & your here telling me now that is so inspiring thank you x

saloshnaidoo profile image
saloshnaidoo in reply toLauraMk30

You welcome doll...I just had surgery....a stent inserted but I feel good ...i have not taken any medication for takayashus.. only for sarcoidosis....once diagnosed you will be guided to treatment n will feel a lot better knowing what you're dealing with. Pray it goes into remission fast enough. Keep the faith

zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK

It is normal, I think, to feel great sadness from time to time. We have to let our feelings out and not let them poison our poor body more.

I get sad, emotional, frustrated, angry..... Don't let it overtake your life though. Try to find joy in small things, happiness is around us! Life is beautiful even when you have medical problems.

Sending you a comforting hug.

michichgo profile image
michichgo

Hello Laura. I hope, as you read this, you're having a better day.

I was diagnosed with MPA vasculitis four years ago and I've I've achieved remission". MPA did substantial damage to my kidneys but that's manageable and I undergo one form or another of medicinal treatments nearly all the time.

The real problem with this disease is the lingering, nearly always present symptoms I suffer, which broadly include joint pain, low stamina and terrible fatigue. My life, both work and social, has suffered greatly. THIS BRINGS ME TO MY RESPONSE TO YOUR POST!

Some days, I find my sadness and anxiety to be debilitating; other days, I feel more supported or in control and I just feel better. The following are tools I utilize in my life and perhaps one or two might work for you.

1. Consider an anti-depressant. If one doesn't work, try another. I began taking one in January and it's helped immensely.

2. Expand your support network. Find those confidants outside of your marriage or current relationship. Family, friends, a support group, THIS or other online groups, a minister, a book or social club (many are online!).

3. Consider counseling; if available and affordable, go.

4. As alone and trapped in your body as you feel, YOU ARE NOT ALONE. Many of us are fighting a similar battle. It is tiresome, I know, but we're here.

5. Consider a happiness journal. Write down the happy things of the day. When our bodies fail us, it's important to recognize the good things and the smallest of our accomplishments. (After my best friend died, it was a year before I could write in my journal.)

6. Find a place to really cry when you need it. You can light a small candle and when the light extinguishes, it's time to stop. I allow myself a certain amount of time. Sometimes, 3 minutes; on rare occasions, all day. Dry your tears and then it's time to move on.

7. Meditation, yoga, walking, hell, a good stretch is all I can manage some days.

8. My unbelievably simple philosophy is One day at a time; when it's bad day, one hour at a time.

I wish for you strength, courage and improved health.

Michele

Tunabird profile image
Tunabird in reply tomichichgo

Michele, thank you! Wise words, very helpful.

Positive or at least optimistic thoughts over negative ones are what I strive for,difficult sometime I know but good for our sanity!

ludo profile image
ludo

Have you got your appointment for Birmingham yet Laura?

LauraMk30 profile image
LauraMk30 in reply toludo

Hi Ludo, I have 23rd of June

klc48a profile image
klc48a

Hold in there Laura we haven't got long for our appointments now !😊 Mine is 13th June Big hug

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