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?
