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| | From:  Tami62 (Original Message) | Sent: 4/5/2008 1:31 AM |
Hi all, I am a caregiver and have only met a few others in this group who are. I would like to extend a welcome to any family or friends who are here to learn about RSD and need support for yourselves. It is so hard to take on the daily responsibilities of those who are suffering and still keep up with your own. It seems that you are constantly extending yourself to help others and sometimes forget that you are in need too. At times we are strong and other times we are just exhasted and don't know which way to turn or what to do next. I find myself becomeing more forgetful as time goes on and feel like I am literally loosing my mind. It can all be all so overwhelming with all the life changes and emotions and keeping up with the medical and leagal aspects let alone if you have other family that depend on you like children and pets and then there is work on top of it all. Some days are just a blure and I just barely get through it all. I could really use some friends who understand where I am living and maybe together we can gain strength and find better ways to cope and some tools to help us. I feel this support is a huge nessecity and will not only benifit us but those who we care for and those who are suffering. I am personally inviting all caregivers to come here and vent and share and ask for help. I need your help too. Tami62 |
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Hi Tami62, I guess I am a kind of a care taker...I take care of and live by myself. As you know I have had upper body RSD since August of 2000, I was married and thought I had the best marriage that could be possible, untill I got sick, RSD invaded my body and my family. Three years ago my wife came home from the law firm she worked at and had divorce papers...she couldnt take what you described any more. My Pain Dr, Neuroligist and my family Doctor all three warned me that sometimes(most times)the uninjured spouse gets stressed so bad that the couple splits up, the stats are incredible...So! I have one word for you and the same word for your husband! Counseling! God bless and help you and your family! Your new friend Frank |
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Hello Tami,
I'm doobie's wife. We have been married now for 19 years. He got RSD 18 years ago. We went to counseling. What a joke that was. His counselor was trying to tell us how to manage our marriage and how to raise our kids. This was coming from a woman who was in the middle of getting a divorce and had no kids.
I understand the stress and everything that goes along with being a care giver. I can tell you that you have to take some time for yourself. Even if that is going out with a friend for lunch or just getting your hair done. One thing I will recommend is that you find a someone who does massages. It helps to just relax and relieve some stress.
I don't get to do it but maybe once a year, but what a blessing it is.
We have two boys who are a great help with everything around the house and who also help when money gets tight.
If you ever need some to talk to please tag me at [email protected] but let me know in the subject box that you are from the RSD group. I will answer any question as I have been doing this a long time. Or if you just need to vent cause you have nobody else who understands.
Julie
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Hi,
I am the mom of a 27 year old who was horribly injured in a automobile accident in the summer of 2002. She endured at least 13 operations and was diagnosed with severe PTSD and CRPS in 2004 when after one to loosen her joints, her arm and elbow just got stuck. She fortunately was directed to a series of doctors, one of which recognised the symptoms and began treatment starting with nerve blocks and manipulation to get things moving. She endured about 20 of these things over the next few years along with all the other symptoms of temperature, colour along with big sores that attacked her skin grafts and scars. The problems then went from her left arm into her right and then to her face.Life went on and the symptoms continued suddenly she noticed burning in her feet and now it has traveled there,
She has also the problems with concentration, unable to focus, read a book, do a craft or take a course. She has just started driving again but is unable to drive on her own or for long periods of time. Next week she is to attend the UCLA pain Clinic with Dr Praeger in Los Angeles for 4 weeks to try and help her and get some strategies to meake life better for her. Of course I have to attend with her as she cannot be alone due to the NES/PTSD seizures.
The problem i am having is the attitude of others to her problem. I have been accused of being an enabler as she just has to get over it and it is all my fault that she can't. That I make too much of her symptoms and "baby " her too much.
I gave up work to look after her as the care bills were eating into her settlement and although I don't regret it one minute I am finding it hard to deal with the moods and depression she goes through sometimes saying things like she doesn't want to go on.
How do other people deal with this? How do you stay positive when your child is in such pain that she cries at night because of spasms and cramps ( Quinine has helped this enormously).
How do you stay positive when you see a beautiful girl be left behind in life as she can't even make a phone call to friends and has all but isolated herself so long that no one even bothers to call her anymore.
That he future is so uncertain. who will take care of her in the future when we are too old, her brother"s longtime girlfriend isn't interested in her and will not even ask her for coffee. There is no one else at this time.
My heart breaks each night when I say goodnight to her and check the medications, she forgets if she has taken them. There seems to be no one we can relate to in the same situation in Vancouver Canada. Perhaps if we could find someone in a similar position to hang out with things may be a little better, is there anyone out there?
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I just want to say that I admire you for joining this group trying to find help for you daughter I love you for that. from what I have seen rsd is under diagnosed in canada I had to go to usa to get them to get it right finally for friends you might want to try www.rsdcanada.org/ I am not a member but from what i know of it you might find friends for her here. I am always looking for more rsd friends maybe she and I could chat online.I hope you find someone though online groups saved me life literal both here and livejournal.You might also look at general pain groups my best friend has migrane that keep here from working but she gets what it is like to be in pain and that is the help knowing not the same pain but she does understand I don'5t have any pain friends in real life but online is almost as good.. As for stay postive it hard.The beest advice I've ever recieved for that was live you life.If you are juggling to many balls drop one,if you are feeling unloved remember to love yourself,and remember those who judge don't matter.Droping balls was the greatest part.I am trying dispirte rsd and cerebral palsy to take almost a full course load.I let go of things that do not matter my room isn';t the cleanest but I don';t care I devote energy to what matter live the best life for me and not for anyone else.rsd is diffcult to explian because outside she looks normal.You might want to try in enp,ianing to use the spoon theory(google has pleanty of links, it really has helped many to explian in a general way what our lives are like. My heart breaks for you as my mother worked so hard to try and gt me well and I know the pressure she had been under and the guilt because she couldn';t make me well so uif you daughter never says it thank you for trying for her] love mirage |
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Thank you for info on the spoon theory. It is exciting for me to think that I have a way to explain to people how this disease affects me without going through the physical symptoms and affects it has on my my life . It is a fine line for me to explain this disease to make people aware of rsd/crps and explaining my very personal struggle to make my disease something I live with and not just becoming the disease itself. The empathetic verbal and physical responses from people I can understand and appreciate, but it always seems that I sense a discomfort from the questioner. I don't want people to treat me differently just because they know about my disability. Sometimes I just need them to know that I cna't make firm commitments but will give my best shot when I can, and will ask for help when I need help. I want to set my limits and I don't want people to assume that they should adjust their behavior for my limits. It is not always a visible disease I know people question how my activity level can seem to have such extremes. Sometimes to the point that I sense that I am expected to make excuses that I am not dibilitated on that particular day. Thank you again. |
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| | | From: Tami62 | Sent: 9/26/2008 8:32 PM |
Hi coolcaregiver, I have to apologize for not responding sooner. Life has been a little more hectic than usual. I too admire your strength and determination in helping care for your daughter. It is sooo very hard to stay possitive at times for the ones we care for. You are doing a great job because you are there first of all. My husband also goes through the severe depressions. It is so hard to hear that they don't want to go on any more. It is like a knife is stabbing you in the heart. I don't know if this will help you or not but maybe it will give you something to think about. When my husband starts falling into the giving up on life mode, it is usually because he hurts so much for one and tired of it but mostly because he feels like he is so useless and such a burden to us. I have found that the things that help the most are to find the possitive things in them that are still there and what he is still able to do even if it is differently than what he use to do. Reminding him that there are others in this world who have lost so much and yet they have found some way to live on and adapt to what life has given them. That he can still be a good husband and father, just in different ways than what he is use to. I also try to encourage him to do what he can even when he has high pain days but to not overdue it. I do help him a lot but I try not to do it all. Sometimes I make him figure out how he can accomplish some of the same goals but in a different manner. I read a story about a woman who went on a sailing trip by herself and has severe CRPS and no use of any of her 4 limbs. I know that not everyone has that much determination or financial resources to do those type of extrodinary things but it made me realize that if I treat my husband like he can't do anything because of his disabilities or his pain then that is exactly what he will do..........nothing. If I encourage him to keep trying to reach some kind of goals and be creative in finding ways to achieve them then he will not give up on himself so easily. There are so many rehabilitating resources for people who need them. Talk to her doctors about them and possibly some pain counseling for her. Keep reminding her that life is not over, its just different. Find things that keep her mind busy. There are a lot more things that you can do. I will try to add some more ideas when I can to this groups pages. Most importantly, when you are having a difficult time staying possitive and strong for her then it is time to make time for you. You have to find the possitive for you too. You can be of no help to anyone else if you are not taking care of your needs first. I have to go for now but will talk to you soon Tami |
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