MDJunction - People Helping People
 

Why wear a ribbon?

  "fibromyalgia" (karenlara)

MDJunction to me

MissNikkiAnn"When you have an illness with the name "Non-Familial Dysautonomia" (a name that most people, and even doctors, have never heard of), you need a network
of people who understand the name and the symptoms/issues that come with it.
MDJunction led me to that network of people during a very confusing and sickly time. For this I am thankful. And for this reason I try my best to give back to other members the same care and help that I received through MDJunction.
" (MissNikkiAnn)

more testimonials
Lupus Online Support Group
A community of patients, family members and friends dedicated to dealing with Lupus, together.
Join This Group
Group Home   Forums   Articles   Members (2183)   Diaries   Videos   Leaders   Guidelines
Lupus Group RSS Feed
Lupus ForumsGeneral & SupportDarkness closing in
01/27/2012 10:18 AM
sharon87
 
Posts: 8
New Member

How do you cope when you feel the darkness closing in on you and all you can do is lie around while others run around after me, when all I have ever done is run around looking after others. I feel so useless, I don't want this to be the rest of my life, being a burden to others. The guilt is crushing me.
Reply

01/27/2012 11:24 AM  Top
Zahc
Zahc  
Posts: 626
Senior Member

Dear Sharon88,

Although we haven't met, my name is 'Zach', and I would ask you to review my profile, and, perhaps scroll downmy diary entires, in case something may prove to be of some help to you.

While I am 58, and live alone with my dog Daisy ( 'the-best-dog-on-the-planet ' ), I can well-understand your feeling helpless, depressed, and--maybe--having feelings of perhaps not being of much use.

I can well-imagine that if you are a wife and/or mother, that,in another situation, you would be the care-giver, and the one often in charge.

I would suggest to you that perhaps, the 'darkness' you feel so palpably closing in around you would be that feeling of depression, and, of helplessness, and hopelessness.

And while you did not mention what condition you might have, or, if you are seeing anyone professionally, or, are on medications, if not, I would urge you to seek professional help, and treatment; there IS NO shame in that.

I think I may safely assume that you are suffering, but not by your own choice or design.

This is important; for you are NOT your condition. IT is something you just happen to have.

Neither did you mention, dear, how long you may have felt this way.

First of all, always remember that you are NOT a burden; you still have a mind to make choices, a heart that is still fully capable of caring, and...a soul, dear.

Perhaps what you may be feeling--too--is a sense of being 'powerless', and of now having to depend on others.

That's why I wanted you to review my profile,'sharon87', for it will show you what I must deal with daily.

At one time, I was used to being the one in charge...both at work, and home, as for 16 years, I cared for my elderly and ill mother and father before their deaths.

I worked full-time nights, and you'll probably laugh ( which wouldn't hurt you! ) that I even had a 'work' calendar in the bathroom at home, so I could look at it, and program action from that.

So it was incredibly difficult for me to make that transition to doing everything, to admitting that--now--there's a lot that I cannot do without help or assistance.

These are but a few things I did regularly that I just cannot do now for myself:

1) grocery shop

2) mow the lawn and trim the hedges

3) drive and own a car ( that was a BIG one, because it limited my mobility.

4) clean up the huose

5) laundry

6) I even need assistance with a C.N.A. to take a shower.

Now, I am on oxygen, 24/7, and can only walk painfully with a cane. That is in NO WAY the 'old' me.

You must remember, sharon, that ( if you are very lucky ) you are surrounded by ones who love you, and hopefully will understand your condition.

In taking stock of yor limitations, also take stock of what you can STILL do. It will surprise you.

You can still dry a child's tear ( if you have children ); you can still tell someone you love them. You can still be gratefull for any number of things.

At very base, is that you live in a Country that gives you SO many freedoms.

Take heart from all the things you are, and of those things you can still do.

At times, excuse me, you'll just have to put on your 'big girl pants', such as times when I have to don my 'big boy pants'.

And, please also never forget, you can still report and end spouse, child, or pet abuse, by just picking up the telephone.

You have value, sharon; you have worth. Please, please never, ever forget that.

If you so choose, please 'PM' ( private message me ) to let me know how you are doing.

BTW....you have made an excellent choice by coming to MDJunction; here, you can find support groups of caring, emlightened people from all social strata, that would help your condition.

Meanwhile, please do take care !

'Zahc'


01/27/2012 06:25 PM  Top
IDoNotKnow
IDoNotKnow  
Posts: 22580
VIP Member

Zahc,

Thank you for sharing this! It brought tears to my eyes. Thank you again.

"If you could read my mind you would be in tears"

"Who cares when I cry"

"A smile just hides the tears we hold inside."
- Me (IDNK)

Previous discussions I participated in:
Just Started Lamictal...Any SE's?
(((HUG)))
Introduction

01/27/2012 07:39 PM  Top
redhairali
redhairali  
Posts: 3435
Group Leader

Sharon, You are just going through a bad patch, most of us have been there at one time or another. It is hard to get used to your new "normal". And even that can very from day to day. Are you taking anything for depression? I always look at it as another symptom of lupus, many of us take something for it.

I hope you are feeling better, you do have value as a person and never forget that.

Alison


01/28/2012 12:56 AM  Top
sharon87
 
Posts: 8
New Member

Thank you for all your encouragements. Zahc, thank you for sharing from the heart. It is very difficult to remember to look at what I have when I feel like this, it is so easy to get lost in what has been taken from me, but you have reminded me, and I have a very loving family, a loving hubby and 3 wonderful teenage children, these are what have got me through the last three and half years of suffering from depression.

I feel a little brighter today, I slept better last night.

It is hard to go from being busy all day, to having to sit or lay around all day because of the pain, I guess it's a learning curve.

I am glad to have found this site where I can share with people who really understand what I feel.

Sharon


01/28/2012 06:30 AM  Top
MMsBrat
MMsBrat  
Posts: 215
Member
I'm an Advocate

Sharon87,

You have done so much for so many others, and now, when you are in need, allow them to show you what your contributions have meant. Allow them to give back to someone who has given so much of themselves to others. Do not look at this as if you are a burden to them. Accept their return gift to you with pride, and love. Obviously they care a great deal for you, and love you most dearly.

Accept their help. It is an outpouring of love and caring made manifest by their actions. Love is a verb. It is a doing, living thing that can take many forms, and come in many ways from any direction. Accept this love in the manner for which it is expressed. This is not being a burden, it is accepting their love in the manner best expressed during your time of need.

Do not feel depressed over this. Feel honored, that they now return what you have given sevenfold. To take it any other way is to deminish their gift to you, and to taint that gift of love, that respect they have for you, and would dishonor what they give freely out of love. Be proud of them, they are showing what they have learned from your actions.

Love them dearly, for obviously, they love you unconditionally. Be proud of what they have learned from you, and keep a good heart. Do not let this blind you to what is in front of your eyes, and do not let this distract you from seeing clearly the gift of love.

Hugs.

Cliff.

Taking it one day at a time.

01/28/2012 08:26 AM  Top
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

Sharon87, It hurts me when I see others suffering on the emotional side of this disease. Most of us along the way have picked up a mental health diagnosis whether its depression, anxiety, or many others we all struggle. It is hard to go from your busy life to barely functioning and it takes its toll on your mind because you do have so much downtime to think about all you have lost. I realized last year that I can't escape what I am going through so I have to face it. I am commited to seeing a therapist and also to having a psychiatrist to manage my anxiety, depression, and sleep. I notice that if I am mentally/emotionally feeling well it makes it so much easier for me to deal with the effect that my diseases have had on my life. Don't feel guilty asking for help. Your family loves you and would probably be hurt if they thought you felt bad needing their assistance. I can tell you from my own family that when I feel really bad they are all on their toes to call and see if I need something when they are on their way home and its awesome to have them think of me when I know they are also so busy. My husband and daughter also make sure that one of them can be with me for all of my appts. At first its hard because you feel like you are an inconvenience but that is what families are for and I know they wouldn't have it any other way. Its humbling to me to hear your words and know that we all have gone through this. You have all of us here for support and anytime you need to vent we are around to listen.

Zahc, Thank you for sharing this with us. It also made me feel emotional. Smile

Yesterday I dared to Struggle. Today I dared to win- Bernadette Devlin
When you get to the end of your rope, tie a knot and hang on-Anonymous

01/29/2012 11:21 PM  Top
hawakeita
hawakeita  
Posts: 1745
Group Leader
I'm an Advocate

Hello. I can relate to your feeling the darkness all around. I have those feelings of guilt, especially because I have a very active willful toddler right now. I'm now diagnosed for almost a year, and what huge changes in my life. One thing that I have noticed is this intense gratitude I feel when people offer to help, and now I never say no. I can't return favors anymore, and feel relatively useless to others, but I have really learned the beauty of the word YES, to help and to support. That has been a great gift. And I do what I can.
MK

01/30/2012 06:32 AM  Top
MMsBrat
MMsBrat  
Posts: 215
Member
I'm an Advocate

@hawakeita,

No one is EVER useless to others so long as there is life. You have a wealth of information to share, love to give, and you offer others not only consolation, but provide a way for them to shine!. You provide a way for others to do good in the world, and God, well He gets a chance to see others doing good things for people. It's a matter of perspective, and when you think about it from the right angle, you start to see things from a different standpoint. A person who needs help provides a way for others to manifest love in this world, to let others see them shine as well. No one is ever worthless, or useless. Look at Stephen Hawkings! He's totally disabled, but, what a mind! And look at all he has contributed! Never feel that you are less because of this illness. You have plenty to give, even ribht here on mdjunction!

With love and respect,

Cliff.

Taking it one day at a time.

01/30/2012 10:18 AM  Top
sharon87
 
Posts: 8
New Member

Thank you for all the encouragement you have given, sometimes it's very easy to just look at the dark side of things, then you have friends who start to show you the good side of things and there is suddenly a bit of light beginning to shine.

Can anyone advise me, I have had a flare up of inflamation in my joints, having had a short course of steriods most of my joints are back to their usual aches and pains, but my back at the base is still very painful, it feels swollen and inflamed, my GP still seems reluctant to accept that I have Lupus and has advised today that I need to keep moving and exercising my back, but standing, walking and even just sitting seem to put pressure on it.

Has anyone had this problem and can they advise whats the best to do?

Reply

Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 Next > End >>

LupusLupus ForumsGeneral & SupportDarkness closing in

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved