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Feeling Overwhelmed

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    Feeling Overwhelmed

    Hi All,

    I am so glad I found this forum. I am a 49 yr old woman who sustained C7 incomplete SCI on 8/24/03 as a passenger in a MVA rollover in a Blazer. My youngest daughter was driving when a bee flew in her face. In brushing it away she went off the road. She kept her cool and brought the car back on the road safely and under control. Blazers have a tendency to roll (this is posted on the viser of the vehicle) and without warning we rolled. Thankfully my daughter only sustained a bump on her head. I was in the hospital & rehab for 3 months and have been home for 4 months. I am very fortunate to have a husband of 25+ years is devoted to me and takes care of me.

    Life is extremely stressful. We have been impacted on every single level of our lifes...financially, emotionally, physically and mentally. I am unable to work right now because my body is still so unstable. I experience constant,full body spasms for which the docs don't seem to be able to manage.( I will provide the specifics of this and questions in the pain forum) My spasms are so severe that they interfere with therapy and daily functioning. No one is giving us clear answers on bladder management and I am having trouble with PT/oT care as I only get 25 for the year!! It is extremely difficult to be positive with pain/spasms 24/7 and no clear obvious sign of spinal cord healing/return of function. Every time we go to docs it seems like we leave with no answers... that no one knows what to do with type of injury and we end up feeling very alone..not knowing what to do to help me get better.

    My husband is my sole caregiver while still trying to work and do all the things I used to be able to do. I feel like both of us have been cheated and he is being shortchanged with a dependent wife at such a young age.

    Emotionally I can handle problems best when I can come up with solutions and a plan of be able to do something makes me feel somewhat in control. This life event has no clear answers and I cannot control any of the outcomes. I don't know when or if I will be able to go back to my job that I love and need and eventually they will have to fill it. We have 1 daughter in college and a 2nd one going in 1 yr. We are fighting with insurance co because they are in collusion. The health insurance has a subrogation clause to claim any payout from the auto insurance policy.

    Everyday is so frustrating and so mind numbingly the same. I am bored and am begining to feel hopeless and helpless. I have lost my faith and confidence and I need to find some hope and trust that things will get better. I am still having a hard time accepting that I might be in a chair forever. How do people find joy and inner peace trust and acceptance??

    I know that you folks know better than anyone these feelings and hopefully can provide some much needed insights.



    I'm a T11 T12 SCI. my accident was 5 years ago, I was hit from behind and my seatback fail projecting into the backseat breaking my back. I don't think I'll every walk again, I'm paralzyed from the waist down. My dear husband of 36 years is my caregiver, we are still in litagation with the car manufacturers and hope to settle within the next few months.
    I'm 56 years old and feel like I'm the oldest to be a SCI but fortunately I have a great support group of family and friends, that's very important to have. I'm not very active in the SCI community but I'm always lurking on the message boards. I have resorted to purchasing a powerchair since my shoulders are wearing out, I broke my left shoulder and never healed right. Keep your chin up and know your not along. Do you know that we are among the few women who spouses have stayed by us! When I was in the hospital in Rehab there were 4 people who spouses left them after not being able to cope with life change. I consider myself very fortunate.
    If you have any questions feel free to email me.

    Mary Jane


      Welcome to our forum, Elaine. It is a "club" that no one wants to belong to, but you will find a lot of good people here and lots of support.

      Your husband may want to join the Caregivers' forum for support for himself. It will be important to get your husband some support, and if possible, some respite to avoid his burnout in this process. Attendant care can be a problem if your family income is too high for public attendant programs.

      You may also want to explore for some women's specific issues.

      What type of work did you do? Do you still have a job to return to? Is there something related you can do? Getting back to work would help with the boredom as well as get you some health insurance (hopefully with better benefits). Do you have an ongoing relationship with a good SCI physician? Spacticity control takes a lot of work over the first 1-2 years for many. Generally a baclofen pump is not considered until at least 12 months post injury. Has this been discussed as an option yet?

      I am assuming that your spasticity is interfering with you being more independent in your own care, as most at your level can do the majority of their own care.

      Please keep coming to our Forums for questions and support as much as possible.

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.



        Oh, I'm sorry. Welcome to the club that nobody wants to join. First off, let me say that your injury is very new. It takes forever for your body to line itself out after sci. I know it feels like forever already. I have to laugh at the boredom though. You sound like me. With all these huge issues, boredom scares me the worst.

        I'm concerned about your therapy options. Where I live I have found a few places where PT/OT staff volunteer their time and expertise to help us out. Is there anything like that near you. Chapel Hill is a college town, right? If they have a PT/OT school, there may well be something similar. We also have students that volunteer, they get sci experience and we get help. It is a godsend for many, especially young kids with no insurance and no rehab. It is also a social contact for us. Have you found a support group near you? If there isn't one, you might think about starting one.

        How self-sufficient are you? Can you cath yourself, do bowel care, etc? A lot of sci's carve up their bodies to achieve more independence. Getting an s/p cath, for example, allows a quad to cath easier when the fingers aren't working right. I would do it if necessary.

        How incomplete are you? Can you stand at all? How are transfers? Can you drive? I guess that's enough for now. Good luck, keep us posted...Beth

        C5/6 incomplete, injured Aug. 2000
        Does This Wheelchair Make My Ass Look Fat?


          Hi Elaine, I'm Chris - C6-7 incomplete, 40yrs old, 3.10months post, married, full-time career, etc.

          Sorry to hear about your accident. All in all however you seem to be moving forward and are experiencing all of the normal nuances of this injury (physical, emotional, financial) and are making the necessary, appropriate adjustments. Hang in there. [img]/forum/images/smilies/smile.gif[/img]

          A couple of ideas to consider based upon your initial post.

          1. Continue to read the Care forum for information concerning bladder management, spasticity (are you using baclofen?)etc. I believe that most answers to your questions can be found within these forums/community.

          2. If you can maintain your employment whether in the same position or not I would suggest doing it. Socially, productively, self worth, self confidence, independence - these are just a few of the reasons that I believe are helpful in retaining balance in our lives.

          3. You're the same person you were before your injury. Adjustments, preparation and anticipation of your needs will help you in regaining more of your normalcy. True, that physically things are much more challenging. However, with time you and your family will re-learn.

          4. Check the other forums - especially Cure to keep up with the people and science that are working to free us from sci. Yes, a cure is coming.

          5. It sounds like you have a wonderful support system and family. Please remember that they need you as much as you need them.

          6. Keep working on your physical (PT) strength. You'll be surprised that within a year or two your strength will probably double from today further helping you with your independence, daily tasks/living.

          Good luck. Please let us know how things are going and if we can help.

          Peace, Onward and Upward - [img]/forum/images/smilies/cool.gif[/img]


            As others have said, this is all still pretty new for you, it will get better, trust us. It takes time to make all of the adjustments, physically and emotionally.

            I am a C3/4 incomplete, 9 years post, who was lucky enough to get alot of return. I do remember well though the feelings of boredom and feeling useless and without a purpose. The best thing that happened to me was when my head nurse called me one day a few months after my accident and asked me if I would be willing to come back to work. I said I didn't know how I possibly could. She said I could do paper and computer work and she would even provide my transportation and bring me home when I got tired, they really needed me. She will always be an angel from heaven in my book. Even though I felt self-conscious about everyone seeing me in my new condition, I felt like I was being helpful again. Watching Jerry Springer just wasn't doing it for me. [img]/forum/images/smilies/wink.gif[/img] The other thing that helped me alot was that while I was in rehab I made friends with a para who worked at the hospital, and she inspired me. She works, she has hobbies, she has a very busy social life, and she is very happy. She also lives alone, her husband divorced her after her accident (and I was to discover my marriage was going to fall apart as well).

            About the limits on PT/OT. Yep, I had to deal with them, too. First, are you asking your therapists to set you up with programs you can follow on your own? I joined a gym so that I could keep up with my exercise program in between sessions. Also, I don't know your financial situation, but I ended up paying for some sessions out of pocket because I felt I really could use the added benefit.

            Especially the first year there are alot of unknowns, your body is still changing alot. The full body spasms pretty well disappeared, although I still have a pretty fair amount of spasticity. Whatever happens, you will learn how to live with it, and it IS possible to be happy and productive. You are different now, but that doesn't have to be a bad thing. People look at me like I am crazy when I say my spinal cord injury was one of the best things that ever happened to me, but I really believe it to be true. I have learned so many valuable lessons about myself, life, and others that I otherwise never would have learned. Sure, life is harder now, but I went back to school, got a new career, and am making it as a single mom, and I'm damn proud of myself.

            Hang in there, be patient, and give yourself some time. Everything will all come together for you. My main suggestion is that you find some kind of activity that gets you out with other people. See if they can find something to accomodate you at work, find some volunteer work like answering a crisis line, join a church group, whatever.

            Best of luck.


              Thanks everyone for your words of encouragement and support. It really helps to hear from people who have passed through this phase and can provide insight and a glimmer of hope.

              My ability to handle things emotionally and mentally right now are hampered by constant full body spasms that are severe and extremely painful. Constant,daily,pain on top of everything else I am adjusting to is overwhelming. I find it extremely difficult to be postive and hopeful when spasms are slamming me every 20 sec for hours on end!!

              Has anyone experienced this type of pain?? I am taking the usual baclofen, tizanidine & valium and the meds have not worked. Because nothing has worked medically and my pain has progressed over the last 4 months I do alot of negative thinking and am very stressed out. It's difficult to go out because the spasms really kick up in the car. If I could find a way to relieve this issue my life wouldn't seem so overwhelming.

              I have stayed in touch with my boss, trying to figure out a way to work from home but that seems unlikely. I try to keep myself physically & mentally occupied with exercise therapy, family finances on the computer & reading. I have lots of friends and family for which I am extremely grateful. I am hoping to get a van this week and to find some relief for this pain.

              Thanks again for your support and words of wisdom. I hope one day to achieve the level of insight, acceptance of the situation and happiness that you all seem to possess.



                Welcome Elaine.

       we're all about working to recover what we have lost from our injuries, and fighting to give ourselves and others that chance.

                The first thing to do is to stabelize your health. Get on as few medications as you possibly can. RESEARCH RESEARCH RESEARCH. Do you really need sopositories to void? or can you get away with oatmeal and digital stimulation?

                Are you standing EVERY DAY for at least an hour?

                Are you working to find ways to get a cardiovascular workout?

                Also...TRY and work. Find a job doing something, ANYTHING. reading to kids? Something other than the injury to think about. There are going to be talents that you have which remain uneffected by your injury. Explot them! Refine them! This is your safety blanket for your mind. The mountains that you can still climb without a stupid neurological hindrance.

                These are all elements in a solid foundation for recovery.

                Then you can begin to explore options like EMG Biofeedback,4-aminopyradine.

       are incomplete. Western medicine will admit you into the "Recovery Camp." As a complete injury (ASIA A, most people don't have a clue what this means) I was told I wouldn't recover.

                but I do everyday.

                God bless you!
                Eric Texley


                  Hello Elaine:

                  The only encouragement that I can offer you is that we are closer to repairing the damaged spinal cord than when I was injured in l987. If I know one thing, you can not stop science and technology and the future is looking better.

                  The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
                  --General George Patton

                  Complex problems need to be solved collectively.
                  ––Paul Nussbaum


                    I just read your post Elaine . If you havent already, get an attorney. As much as we hated to have to do it, we did. Our son was driving with a guy when their jeep rolled. Our health insurance company had the subrogation clause in the policy also, but since Jesse will not get "full recovery" they awarded him the money from the drivers insusance, which I might add was a piddly amount. Since you were injured in your own vehicle, this might be totallly different. Just check it out.

                    [This message was edited by beelady on 04-10-04 at 11:00 PM.]
                    "Oh Lord, bless me indeed, enlarge my territory, that your hand would be with me, keep me from evil, so that I will not cause pain."


                      Please check your private topics.

                      I tried to e-mail you privately but the address given on your profile did not work for me.

                      Let me know, I'd be happy to help. [img]/forum/images/smilies/cool.gif[/img]



                        I am a C4-C5 incomplete and I also had near constant spasticity when I was first injured in 1993. Like you, I tried baclofen, tizanidine and Dantrium for spasticity to no avail. I cannot take Valium and Dantium elevated my liver enzymes.

                        I found myself depressed while on Baclofen although my physicians told me that there was no connection.

                        Finally, I stopped everything (why take it if it's not doing anything?) and my physician prescribed clonidine transdermal patches. This finally worked - I change the patch once a week and the spastcity does not limit most ADLs.

                        I'm now able to drive and work. I'm not depressed and been back to work for the last eight years.

                        Obviously, don't do anything without speaking to your physician, but maybe he/she will be willing to try clonidine patches (brand name: Catapres TTS) and ween you off of the other meds that aren't cutting it.


                          Thanks PJT for the suggestion!! I will definitely speak to my MD. I have recently felt that maybe part of my problem with spasms is that I am over medicated. I never really took much more than a tylenol..since the accident its been 2 surgeries and a boat load of drugs. My body has had no time to purge itself of off of this stuff!!

                          Thanks for the feedback,I will e-mail my dr today.



                            Elaine, I almost thought that I was reading a post about myself. I think that we have too much in common(T2 incomplete). My six year old daughter is what kept me from throwing in the towel during my four or five suicidal stints since my accident in july 03. My spasms kept getting crazy, so I'm on 140 mg baclofen/day now they stay kinda in check. The pain OH the pain. Six weeks ago I was at the end of my pain rope. It was blinding, I couldn't think, function, or even lay still. No amount of pain or other meds seemed to do a thing, so my neuro doc started me on neuronton. After being a complete zombie for one and a half weeks the edge was finaly taken off. Up up up on that 1200 mg/day. I still hurt alot, my head is completly up my butt, I still spasm, but I can sorta function for three hours or so before I have to lie down. I'm walking and crawling in therapy now and I really hope that things turn around for you. It sucks to think that we cheated death only to live like this, but it has to get better, it has no choice. Welcome to carecure. Reading the postings daily keeps me from feeling alone and lets me know that I am not the only one. It is comforting, informative, inspiring, and entertaining. I hope it has the same effect on you.


                              Hi, I'm not SCI but I am from Chapel Hill and know that we do have a somewhat new rehab facillity on the 8th floor and PT/OT behind the Med school. I'm not sure how good it is I have been researching for a while as I am interested in becoming PT nurse...but I have seen several articals in News and Observer in the past month about the rehab facility and UNC. Check it out..visit it and let me know what you think. I am checking out all of the rehab facilities in NC and have heard UNC is pretty decent. Get in involved in PT/OT and any support groups they offer(I know its not much if any..i checked up on it) but Wake Med offers some pretty good deals if your insurance will go for friend just start a PT twice a week routine with the E Stem bike...he loves it. Good Luck!! Keep your head up and email me if ever you need to talk!