I miss the ME I use to be

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green_eyed_girl
New Member


Date Joined Sep 2007
Total Posts : 10
   Posted 9/23/2007 1:36 AM (GMT -7)   
     I really miss the me that I use to be. I use to think I could do anything and everything....Now I am lucky if I make it out of bed everyday.
     This past week has been so long and hard. I started last Sunday with an episode/flare. First it was a migraine that lasted for 3 days. While with that I broke out in a hot and pretty diturbing rash across my nose cheeks and forhead. If that isnt enough i feel like every bone in my body is being pulled outta my body. My skin hurts so badly...and I will spare you the details about whats going on with my stomach and how food wont stay where it should. I can hardly make it from the bed to the couch. And now on top of it all I got a boil on my leg!!!
    Lord help me, I cant stand this. This use to happen maybe every 4-6 months..not this bad...but now it is at least 2-3 times a MONTH!! I miss me. I miss me so much. I miss playing with my children. I miss taking care of my family...instead of them taking care of me. I think maybe the worst thing is my memory. I am having real trouble remebering things....and it scares me. I see the worry in my childrens eyes and I try to put on the "happy" face and trudge thru the day like a wounded warrior that still has to fight---but this battle is a hard one and i am not properly armed for it...and the enemy is invisible and always changing positions and changing the rules of the game.
    I know this is just the desease talking....but i am just so tired of being so tired. Thankyou all for this board. Sometimes I feel like I am so alone and I can come here and find someone like me...someone who understands me and gets me without me having to use ALL my energy just trying to explain what is going on with me---what is wrong with me---and what am I going to do about it. Thankyou all.
JOY
 

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/23/2007 5:42 AM (GMT -7)   
Joy, your depression about the loss of your life as it used to be is understandable, expecially since most of us have many of the same feelings as you do. Is it possible for you to see a therapist? Once you accept your desease it becomes easier to get on with the new you. Don't forget that you haven't changed even though your health has. In some ways I liken the changes in my lifestyle with the changes that occur as people become elderly. I watched my parents age in a retirement facility and it was pretty obvious which residents had a healthy acceptance of the problems that come with aging. I constantly fight the urge to go the other way and focus more on my disease than I do on myself but I know that it's not what's best for me, my life, and my family.

I'm so sorry you're going through this. It's a tough battle, but Joy, you can do this.

(((((hugs)))))

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/23/2007 6:08 AM (GMT -7)   
Joy . . . you expressed that so well. Thank you for starting this topic. YES!! we do miss the old "me". *tears*

I agree, this board is great medicine when we need someone who understands.

A big hug and some hot tea for you sis!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/23/2007 9:26 AM (GMT -7)   
Joy, I think you just described so well what so many of us have felt while battling this disease. I think it is completely normal to feel tremendous loss and grief of our "old lives". I often describe it as feeling as if my life was shattered into a million pieces and I had to rediscover who I was all over again.

It is so hard being a sick mom, isn't it? I have the mommy guilt a lot, although I hope it's reassuring to you that the longer I've been sick the more I have learned to be there for my kids in different ways so the guilt isn't as severe or as often. I still do get the guilt though, especially during bad flares.

If your flare continues, please call your doc. I'm not sure what meds you are on, but there could be something the doc could give you to help you through this flare.

I'm glad you posted about this because it's something so many of us go through. This forum is such a blessing because at times when you feel utterly alone, you know you can come here and be among friends who really understand what you are dealing with.

I'm sending you lots of (((((Hugs)))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/23/2007 4:33 PM (GMT -7)   
Hi, Joy. I think every single one of us know exactly how you feel about the loss factor you're experiencing. I have previously posted a link to a very helpful article that came in my Healing Well Summer 2007 Newsletter dealing with a chronic illness and how best to cope with it. The web address is www.healingwell.com/library/health/salvucci1.asp Please take a look at it and see if it inspires some ideas. As far as how you're feeling, I agree with others that a call to your doc sounds in order. Take care and feel well soon,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/23/2007 6:44 PM (GMT -7)   
Hello Joy,
 
We haven't met yet.  I"m Ginny.  When I read your post I broke down into tears. Tears of understanding exactly what you are feeling.  I miss the old me too.  I find myself reverting back to my early 20's when life was easy, I was healthy, and the world was my oyster so-to-speak. I have many days, like you do, when I don't know if I can get through another moment of feeling like "this".  I want you to know that you're not alone.  Not one bit.  We all have different symptoms and issues, but the emotional battle we go through is the same.  This disease is relentless.  I've come to a point where I've told it, "you're not going to win". I went 4 years without a flare up. Remission like state.  It was wonderful.  I"m now back to having issues.  I won't hijack your post!  I'll explain it all in another one.
 
I just wanted to let you know that we're here for you, and as hard as this gets, you have to keep on fighting.  Don't let it win.
 
God bless,
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/24/2007 7:58 AM (GMT -7)   
(((JOY)))... I also go through this a few times a month and get really down. I'm going to be 32 this Friday and this should be the prime of my life. My husband still goes out with his friends and drinks and has a good time and he always invites me to come but I always decline knowing that I would not get through the night. What is scary is not knowing what each day will bring but I try to keep in the back of my head that I will keep on fighting as Ginny says.

I hope you get to feeling a little better soon.

Take Care
"Des"
Co-Moderator ~ IBS Forum & Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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Lupus & Diverticulitis flare (Flagyl 500 mg/3, Levaquin 500 mg, Zofran 4mg PRN for nausea, Hydrocodone 500mg PRN for pain)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/24/2007 1:10 PM (GMT -7)   
Joy,
I know what you mean, it seems so unfair to be robbed of your old self by illness. With every doctor appt and visit I think, this will be the one, they will fix my skin, fix my guts, stop my arthritis, but it just goes on , more and more pills. And you look back at how much time is wasted being sick. But sometimes life just is what it is and hopefully we are better people for our illnesses, beauty on the inside is more important that beauty on the outside, and shines through no matter how sick we get. *tears* I look at my bf, who's aged since we first met, and I can still see the old him in his face, though he's changed alot and I know he still sees the old me. When people love you they see with their hearts, and that's what matters.

I hope your fatigue gets better and you can get clear of that uck feeling. The trip to the livingroom is often the only one I take, but I'm trying to do better. My bf put a bird feeder outside the window so I can watch what's going on outside and I now have a fish tank too to look at. And my dogs force me to get up once in a while to go outside. I try to do some crosswords and stuff to exercise my brain even if my body isn't doing good or read. Sometimes I make jewelry with beads. I make alot of earrings, they are easy to make. I paint with some cheap watercolors, its very hard and I'm not very good, but when I can't focus to read or write I can still paint. Writing has helped me alot, given me back my youth in a way by writing about young characters having adventures, doing what I can no longer probably do, or what I could never do. Do you do things like this? It helps me, makes me feel like I have a purpose.

When I put on my makeup and do my nails, which I try to do regardless of whether I leave the house or just make it to the living room, the mirror is a reminder of what I am now, and sometimes, admittedly, I hate it and get down about it. I'm scarred up, pigment messed up so I'm two different colors, fat, bad skin, hunched over and just not what I expected to be at my age, but I can still pull it together and I know you can too. On the vitiligo forum, people there say that we are not defined by our skin color. It's not the physical things, but what we think and do that is who we are. I put on makeup because I always have, same with nails. My psychologist once told me she could tell if I was sick because of my nails and makeup and hair and clothes. I bring makeup to the hospital, if I go in. That's just me. Some people are the opposite and that's them. These routines we figure why bother are important, and we deserve to be able to do them or have someone help us, it is who we are in a way.

I hope you get through this rough time and don't give up on yourself. Sometimes we look in the mirror and all we see is our sickness, but that is not what everyone else sees, or has to see. Its a struggle, but you just keep going on, doing what you do, what you can do, like everyone has said above. Though I can't play my flute anymore, or ride horses, I can still write, and as long as I can do that, I'm free to relive my good times and imagine many more. I will keep you in my thoughts and prayers and hope that you find your way back from this soon.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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