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Justmesuzi

Member
Joined
Sep 24, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
06/2002
Country
US
State
FL
Diagnosed in 2001 with chronic fatigue, 2007 with Fibromyalgia, sciatica, scoliosis, arthritis, degenerated disc disease, degenerated nerve and bone disease. This is the first time I have ever posted on a support group however I have visited and read many over these long years. I am just really at the end of my rope today, it has been a long time in coming and feeling like death sucking through a life saver. I'm married for ten years and have ran the office of his environmental company for the entire time. In the past two years mismanaged would be the more appropriate term... I just feel as though I am living a nightmare that I can't wake up from with no end in sight. We had a meeting at our state capital yesterday so we had to wake at 3am to be there on time and had other business to attend while there (get the semi/tanker tag straightened out as I bungled it so badly it was insane) and while at the tag office I collapsed and the paramedics were called to my embarrassment. I thought I was going to have another seizure (started having them five years ago when I ran out of Lyrica for two weeks, was in the ER three times in that period. They say they don't know what is causing the seizures so they are at a loss as to making them stop. I may have several in one day or not have one for months). My legs became weak and I knelt down, dizziness and loss of balance overwhelmed me and my husband was telling me "Get up, you're embarrassing me!"and I couldn't, it felt as though someone pulled the plug. I explained to the paramedics my condition as best that I could and told them we had had a rather long, exhausting and stressful day and that I just needed rest. They left once they felt that I was going to be ok. My husband who goes to every doctor appointment, cat/mri and testing with me puts on such a loving and caring act in front of others but what happens behind closed doors is escalating out of control. He has always been distant when it comes to any physical display or comforting and has a rather gruff way about him but he is growing more and more verbally abusive and abrasive and quite loud and shattering. I can not handle being frog marched every day of my life anymore, there is no rest for me, there is no help - every morning at 5 I had best be up and ready to march out the door to work or all Holy hell breaks out and I have conditioned myself to do so even when I am wall-walking and nearly crawling overwhelmed with pain and my body so weak it is all I can do to move. He firmly believes that as long as I keep moving that I will not get worse, that it is saving my life and preventing me from staying in bed. I just don't know what to do or where to turn. Most all of my family and friends ebbed away over these past ten years and it is rare that I hear from anyone other than on Facebook and I try hard not to let anyone see inside my real life. We live and work behind 6' perimeter fences and electric gates which are feeling more and more like prison walls. I have umbilical ruptures and had my first surgery in 2010 and another to repair that one a year later. I asked if I could have someone come help me for a day or two and he refused asking me why when he would be around. Within an hour of getting home from the hospital after somehow managing to get out of the Hummer and into the house and my recliner (by myself) I asked him to please help me to the bathroom and he told me go by your damned self - The rupture split back open and he wouldn't take me back to the doctor that preformed the surgery. I just try and lie back and push it back in when it pops out but when I get constipated (as I often do) it hurts like heck. Right now I feel so despondent emotionally, if I had any tears not frozen inside me they would be a relief. My pain is at a 7 and my meds are barely taking the edge off. I take Lyrica 75mg 4x daily and Hydrocodone 10/325 (I get 120 a month and sometimes use maybe half) and Flexeril 10mg which help me to go to sleep when the pain is on fire - they work the best but I can't take them during the day as I would be out cold. I may use 30 of those in 6 months. As to meds, I feel less is best but right now I'd give my heart to be out of pain. When I have an extreme flare like this I always feel the world is ending and see only gray skies and a half empty glass but when I am functioning with a pain level I can deal with (which I am grateful is most often) the sky is blue and my cup runneth over. Today just feels like the end of the road and I have no one to open up and talk too, a rather lonely place to be and so that is how I come to find your support group. If I felt a trip to the ER would benefit me I'd crawl if I had too to get there but the last time I went for out of control pain 6 years ago I was made to feel like a drug addict even though I carried my meds with me and explained they were not breaking through. They asked me how many pharmacies did I use and I told them I only ever used mine since arriving in this city (one pharmacy located in my GP's office) and that seemed to baffle them especially when I told them if they had any questions to call the number on my bottles and ask for Lisa the head pharmacist there. It was a joke thinking I could get help there, made to wait in a near empty ER for two hours, placed in a curtained cubicle with an IV (for what?) and left for another four hours with three pokes through the curtain to ask if I was doing ok and one of those they changed the bag on the IV. Finally I was given a shot that made me higher than a kite and I woke up at home with no idea how I got there in pain again so what good did it really do? This minute I would be grateful to have one of those shots if only for a few hours respite but not enough to go through all that time and humiliation again. Have you ever had a day or a moment where you have been in the shoes I am wearing right now? I was turned down for disability last year when I applied directly and they even did an exam - blew me away that they said no. There are days like today that answering the phone and making out manifests is the best that I can do and if I worked for anyone else I would have been fired long ago. I have not had a check in my name for over 5 years now as the company could not carry the liability for any mishaps that I may create and have it blow back on the company which bodes well if I can find a way to reapply again for disability. Oh, I am 49 years old - if that matters. Have you been in these shoes?
 

HappyToBeAlive

Active member
Joined
Sep 22, 2014
Messages
35
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
OH
I am 49 and married. My heart literally broke as I read Your post. I am sooo sorry that You are going through so many horrible things all at one time! It is bad enough dealing with Fibro, let alone all the other stuff too! I hate that You don't have any support. I wish that I had some great advice,but all I can offer is Prayers for You, and I wanted You to know that I care! I just want to gently reach out and give You a big Hug! Please take care! I think You need this wonderful groups support.
 

Justmesuzi

Member
Joined
Sep 24, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
06/2002
Country
US
State
FL
I am 49 and married. My heart literally broke as I read Your post. I am sooo sorry that You are going through so many horrible things all at one time! It is bad enough dealing with Fibro, let alone all the other stuff too! I hate that You don't have any support. I wish that I had some great advice,but all I can offer is Prayers for You, and I wanted You to know that I care! I just want to gently reach out and give You a big Hug! Please take care! I think You need this wonderful groups support.

Thank you HappyToBeAlive, just read your reply and am grateful and embarrassed all at the same time. Just knowing somebody out there cares is everything. My two pillars of strength both passed away just eight months apart back in 4/'10 (Sister) and 12/'10 (Mother) and it has been a long hard road. My sister and I both had umbilical surgeries three weeks apart, Debbie went first - and she passed over the night that I had had mine and it was hell to give her eulogy while wondering why I lived and she died. I still struggle with survivor guilt but not as badly. I've two beautiful sons, one lives here in town, Brandon is 28, but I rarely get to see him and he struggles with bi-polar disorder but is fully functioning and we talk by phone at least once a week. Hans is 30 and lives up north, he has three beautiful daughters, two loving step sons and a wife that is a real trooper and we go up about once a year more when time allows. Our whole family simply disintegrated the year Mom and Deb died it seems. My oldest brother comes every few months but none of the cousins interact, it has been years since I have seen or heard from any of them and none communicate with the others. It is as if we were a ship that was blown to bits at sea cast away from one another. Family is everything to me and it's hard not to live in the past when the present sucks so badly. What I'd give to go back just one more day, any day - of what once was when we would all get together at my prior home on the river for boating and pic nics, bbq's and such. Prayer and my relationship with God is what helps me to hang on but the loneliness is awful. it feels as though I am forever on the outside looking in. I wouldn't wish being sick on anyone but it is somehow comforting to come here and know that I am now one of a crowd and not alone. It is somehow empowering and comforting and I am truly grateful for your reply, it made me cry tears of hope. I just apologize for being a 100% downer, not always like this please believe me. I was blessed with a whole 18 months of miraculous health and no wall walking or anything, traveled and made up for lost time. After nearly 6 years of being as I am this minute (never been this depressed though) physically it was like being let out of death row and prison and freed and then to be dragged back kicking and screaming. It has been progressively worse each day the last three weeks and I know in my heart I have come out of that remission of sorts and am not accepting it with grace. I told my Rheumatologist on my appointment on Friday that I feel I am in a scary depression and that my best friend (lives cross country) had made me promise to tell him she thought so too and he didn't address it nor write me anything but a new muscle relaxer to add to my Flexeril 10mg, Lyrica 75mg and Hydro 10/325. I am very afraid of the deep volume of my feelings right now, only ever been this low once and I didn't believe I would survive it. I am not now or ever been suicidal but have begged God to take me out in my prayers but here I am. I know in my heart if I just accept that I am out of remission and deal with it I will feel better and energy would best be served back in the game of roulette of "what's going to help today". I used to live in the same neighborhood as some of the members of Telsa and Molly Hatchett when I was younger and went out with a fella who wrote "Little Susie is on the Up" - what I would give to be her again.
 

charitybear7

New member
Joined
Sep 28, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
09/2014
Country
US
State
TN
I am 35 and married. My husband travels most of the time for work. Your story really touched my heart. I am so sorry you don't have more support. An emotionally abusive relationship is the last thing you need on top of your health conditions. Prayers for you for strength and healing. :)
 

Tharper

Active member
Joined
Aug 13, 2014
Messages
90
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
FL
My heart aches for you. May God give you the strength to get through, and you have us to talk to. Gentle hugs,
 

Justmesuzi

Member
Joined
Sep 24, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
06/2002
Country
US
State
FL
I am 35 and married. My husband travels most of the time for work. Your story really touched my heart. I am so sorry you don't have more support. An emotionally abusive relationship is the last thing you need on top of your health conditions. Prayers for you for strength and healing. :)

Thank you charitybear7, Thank you for your prayers, they are so needed right now and I appreciate them as well as the time you took to send your note. At 49 I've had my fair share of hard knocks, this just feels like one of the harder ones, however I try and remind myself of one solid truth that is hard to remember at times - I got to where I am by somehow surviving them and feel that I did so only by the grace of God and being lifted by the prayers of others. We have been to counseling and the tools we learned there have helped substantially in building a stronger marriage but there is much room for improvement. I can't understand why he turns his back on me when we are alone and I need him the most, it's fully contrary to his nature. Sometimes I feel that when the lynch mob of life knocks on my door he takes the biggest club from their leader and finishes the job himself instead of fighting for me, a bully mentality of sorts. But publicly he is at his finest showing compassion, empathy and tenderness - he laps up the attention like a kitten to milk. Baffling. I have tried to get a living will stating that if I am not of sound mind (I also have a neurological issue that is causing brain damage, I have been safe and good so far) that I be placed into an assisted living center and he could visit or take me home for visits. In the State of Florida I can not get anything legal set up, if my mind goes he will chose and I do not want to be at his mercy should that happen. I want accountability. I phrased it to him by saying as long as he or my sons visit that they would be accountable. Other than the bully mentality when I'm doing poorly he is a good man, perhaps more counseling will heal this area that is standing in the need of divine healing.
 

Justmesuzi

Member
Joined
Sep 24, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
06/2002
Country
US
State
FL
I am 35 and married. My husband travels most of the time for work. Your story really touched my heart. I am so sorry you don't have more support. An emotionally abusive relationship is the last thing you need on top of your health conditions. Prayers for you for strength and healing. :)

My heart aches for you. May God give you the strength to get through, and you have us to talk to. Gentle hugs,

Thank you Tharper, my heart is healing bit by bit with every reply and nearly feels whole again just being able to vent and let the ugly out of my heart so the positive can get back in. I wish I would have joined a support group before now, I always read them but never participated. I am just so humbled and appreciative of all of you, your kindness and goodness are balm to a wounded soul. I had to do something, I was heading for a dark and scary place and wasn't seeing a way out this time - until now. Love and gratitude to you and all who have replied, xxoo;-)
 

HappyToBeAlive

Active member
Joined
Sep 22, 2014
Messages
35
Reason
Undiagnosed
Diagnosis
09/2014
Country
US
State
OH
Am new to this, but just felt like I really needed to reach out to you. When I was a little girl,my nickname was "Little Susie"! Lol! The darkness can seem sooo thick and heavy sometimes..but it only takes one ray of light to pierce right through it! Sometimes, it takes effort on our part to just look up and see that the light is there. Hugs to you!
 

Justmesuzi

Member
Joined
Sep 24, 2014
Messages
13
Reason
DX FIBRO
Diagnosis
06/2002
Country
US
State
FL
Yesterday afternoon we went for a ride to the coast (10mi) with our dogs, had an early dinner on the beach and watched the surf. The ocean is so healing to me each wave taking the darkness out and bringing fresh new life in. Our miniature datsun had me laughing so hard my sides ached watching him chase each wave then jumping and attacking them with such joyful abandon - never knew he was a surfer dog, lol! Light at the end of the tunnel <3 My Mama used to say she felt the closest to God where the ocean met the sky, me too.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Suzi! So sorry to hear about your pain, I know how bad it is to have a partner who doesn't understand. Some people can be so cold and mean, I think he doesn't understand what you are going thru ((hug)). My heart aches for you... it's just awful what you go tru with that man. I make emphasis on what you go tru with that man rather than your pain because i know hoe the negativity and foul behavior of someone close to us can make everything much worse.

You sound like such a brave and nice woman, you try to carry on no matter what (been there) and that's something not many people can do. I really admire your strength, your courage to deal with all those problems. You are truly admirable, I hope you know that. You deserve better than this, much better. I hope you find your way, please don't give up! I know it is hard, but please don't!
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,529
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
My ex hubbie was like that after ten years I left him yes life hard now but I'd never go back to not being loved for anything. Sending u hugs and lots of healing light xxxx
 
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