Needing Support

Discussion in 'Spirituality/Worship' started by TinaJones, Feb 11, 2009.

  1. TinaJones

    TinaJones New Member

    Hi everybody, I'm an "old" member that hasn't posted in forever. These boards, though, were such a source of comfort to me when I first got really sick. I'm in a different place now, though - and really could use some prayers and support.

    The isolation of having a chronic illness has just really hit hard. I'm through the stages of getting a diagnosis; maintaining hope that my body would heal (I now know I have stuff that's probably NOT going away); having a great "real-life" support network that was right there through those first couple of years.

    But, as many of us know, relationships change w/ a chronic illness. Many of those people, actually - most of those people - aren't there anymore. I've tried to accept the reality of this - I'm not angry...or hurt...or whatever (at least, I don't think). I just feel really isolated. I can't help that I am not the same person anymore and have severe limitations on what I can do, what I can give, etc. Between having a disabling illness and having six sons, it's all I can do to SURVIVE; that is no exaggeration. Most days, I squeak by w/ my head just above water.

    Thanks for listening to me vent. I hope someone will read this and just understand what I'm saying. My mind understands the reality of human nature, chronic illnesses, changes in people, all of that. But my heart just feels the isolation and cries for the type of connections I had in the past. Does any of this make sense? --Tina
  2. Lendy5

    Lendy5 New Member

    Yes this makes sense. I can relate to what you are saying and up until these past few months I have tried to keep my illness silent to others. I guess in hopes that it wasn't real. After all I had been told it wasn't real. I was kidding myself.

    This illness has costed me so many relationships with friends and family and now they all don't speak to me any longer. They never knew why I was so quiet and distant up until my husband told them but none of them want to understand and still refuse to. My childrens grandparents won't even talk to their grandkids because of their lack of understanding.

    Me and my husband went through a separation for a few months and it made me even colder with a don't care attitude that I can't shake. We since have come back together but it's not the same and we fight constantly. I pray all the time for the Lord to lift my heavy heart but I am starting to question my purpose in life. I have always tried to live right but why do we all have to suffer so? I have never had a friend that I could share my problems with and left this board over a year ago thinking it would help but I realized this board was a lifeline to me and it wasn't the one hurting me. I have never hurt this bad ever and it's really pushing my limits. My kids 2boys and 1girl are what keep me going.

    Just wanted to let you know you are not alone and anytime you need someone to talk to we are here. I will say a prayer for you and hope you receive the support you need and deserve.

    Your Friend,
  3. springwater

    springwater Well-Known Member

    Hello, i think most of us with chronic illnesses have gone through what you mention; the challenges of facing and accepting the limitations illness and its excess baggage places on us, our social life, our ability to live life as we see other people do.

    Many of us still struggle with the issue. I know I do. I know i do not measure up in many ways to the expectations of some people. But then knowing what i do (that i do have this disorder and that i do the best i can with it,) has helped me come to terms with it and takes the sting out of any negative situation that may arise - maybe a slight from someone or a criticism from the vast majority who do not understand our inability to be like themselves.

    I feel your frustration and disappointment when you feel isolated; this board has members who face similar issues and have learnt to delve into their resources and come up with the strength to keep going and find joys and happinesses in the little things of life, inspite of their problems. I hope you will soon start feeling better and will discover life still holds much scope for joy and beauty.

    Please feel free to vent when you want to. Its great to get things off your chest.

    God Bless
  4. TwoCatDoctors

    TwoCatDoctors New Member

    I hope you will look at this from a different way and maybe I can help a bit.

    When I came out of the hospital and was permanently disabled, it greatly impacted my life (I lost my job even though I tried so hard to keep it) but I lost my friends too. At the time my insurance policy would only allow a "walker" and I was putting all my weight on the walker to struggle to walk. My one friend wanted to borrow a book I had and I took it to her and when she saw me struggling to walk, I could see the tears welling in her eyes and the pain she felt just watching me. I kept a happy face and smiled and was happy to see her, but she felt immense pain to watch me try to walk. She got me seated and was so worried about me ---and here I was so proud that I made it all on my own.

    That was the last time I saw that friend and word spread and I lost all my friends, except one. It was just too much pain to watch me try to walk and get around. The same goes with illnesses that leave us disabled too. It's hard for people to watch us slowly get worse and many don't know what to say, where to invite us if they invite us at all and it's a real dilemma. I have heard of friends that become caretakers for friends and that can become way too much to handle. I also had a trauma and thankfully began seeing a therapist, which helped put so much into clarity. He told me I was the only patient he has had who became disabled and was really doing well with being disabled. I also have 3 types of lupus, irritable bowel syndrome, migraines, cataract from medication I have to take, and I've been really working through a very traumatic event that occurred that left me stuttering and barely able to communicate--I worked my way out of the stuttering and speak normally now.

    I go to a local disabled support group and losing friends is what happened to many there who have multiple sclerosis, stroke with paralysis, brain injuries, fibro, and me with back injuries and other disabilities, plus many other people there. I have an electric scooter now, but not everyone feels comfortable around an electric scooter, but I decorated my scooter with pretty flames on the side like a racing car (you NEVER see electric scooters decorated!!!). When you become disabled, you start a new life and many times it means you lose people in your life and you end up finding support through local disabled support groups as a start. But tell yourself that you have to accept the new life and go with it and not stay in the past.

    Please don't spend time reflecting back on friends that used to be and start thinking about whether you can manage to get to some local disabled support group meetings. Many times they are held at the local senior centers because they lend out rooms without having to pay for the rooms. So check there for the support groups they may have. Do everything possible to go to any local disabled support groups and local depression support groups. You'll find the type of people who understand and care.

    And I pray every morning (my back is so bad at night that I'm better to pray in the mornings and I can then put my hands on my cats to pray too) to thank God for what I have been given and I ask him for guidance for me because I don't like burdening him every day with constantly asking for everything for me. I live alone with two wonderful Service Animal Cats that help me out and I have a roof over my head, food to eat, the cats have everything they need, and I am very grateful.

    [This Message was Edited on 02/12/2009]
  5. windblade

    windblade Active Member

    Please keep sharing - I know being here has lessened my feelings of isolation. Even kind friends can't really know the 'inside story'. What our everyday lives are like. But this board has so many caring people who will pray with and for you, and share the treasures they have found in the midst of it all.

    Lifting up prayers for you,
  6. jole

    jole Member

    I too understand your pain and despair....sometimes it is nearly too much to deal with, isn't it? I try very hard to stay upbeat and count my blessings, but with chronic depression it is very hard.

    Since becoming isolated, I have found more peace in not having people in my life other than my immediate family. I would love to be able to be out and about, but I cannot.

    My social life is here on this board, as it is with so many others, after losing all our outside friends. The chit chat board is great for the purpose of having upbeat conversations with others, and finding friends that stay with you. This has become my lifeline to the outside and friendships. I no longer feel "different" or shunned here. Please get involved in the conversations going on there. It helps. And don't give up! I will remember you in my prayers also...God doesn't forsaken His children....

    [This Message was Edited on 02/13/2009]
  7. Doznclan3

    Doznclan3 New Member

    I soo agree. I've told my children, that life happens. You can either dwell on what's bothering you, or look for the good in what is happening.
    On pros and Cons, I often wonder why people are so hard on themselves. There is so much good in all of us.
    Thank you jam..
    Love, Cynthia
  8. Doznclan3

    Doznclan3 New Member

    I just wanted to come back on and reply better to you. I came back on and saw that I replied to something someone else had said, and hadn't really made one to you.
    I feel so bad for you. I remember when I came to realize that this pain, wouldn't go away, for good, that it was here to stay. I would think at times that since I was having good days, that maybe those drs were wrong. Well, it's been years since I was diagnosed with Fibro, MS, and so many other things that is seems ridiculous. People don't understand, they can't if they haven't been where we have. Family, mine at least, are more understanding. I've heard that some aren't so understanding..that would be hard. I've come to the point where I just don't say too much about what is going on. Not too long ago I actually gave it a try again, to explain that I wouldn't be able to make it to something. Well, she thought she would laugh it off, just kidding, or whatever...when she said, "oh, I'm not even listening to this." She really thought I was making excuses. So, I just stopped talking. My husband was right there, he just put his head down and kind of shook his head back and forth in disbelief. He knew how I was feeling. I think after I'm around this person for a while she will come to know, that I wasn't making excuses. Situation being, I will be around her more. I love this person. She just doesn't know yet. She doesn't, and many others don't know, of all of the drs. visits, ER room visits, speciallty dr visits, surgeries.... I like the part where TwoCatDrs said, she came to her friends with a smile, and was happy to have just made it there. People really don't know how to react to people with disabilities..should say some. Those that have been around others with it, or suffer themselves do. Some are just quiet because they don't know what to say. I like to think that we are getting more prayers out there than we realize, because we can't fully know what others are thinking about us. :) My MS is slow progressing, very thankful for that. TwoCat...if you are reading this post I have a question. How are your eyes? Mine are going bad fast. I dread the day that I may end up in a wheelchair, but have a son with spina bifida that has been in one for years, so that doesn't worry me so much, but losing my eyesight is a scary thought. I wear polarized, prescription of course, to go shopping or anywhere that the lights are real bright. It's got to be hard on people that I'm standing there talking to with these dark glasses on. If you don't reply to this, maybe I'll post one directly to you.
    Tina, please come back on and let us know how you are doing. Keep praying and talking with the Lord. You will feel of his love. You are never ever alone, he's there for you.
    Love, Cynthia
    [This Message was Edited on 02/15/2009]
  9. TwoCatDoctors

    TwoCatDoctors New Member

    You asked about my eyes.

    In addition to being in my electric scooter, the eye specialist discovered I have a cataract that is caused by medication (I have 3 different types of lupus). The eye specialist uses the eye equipment to view my dilated eyes but then uses extra magnifying lenses to be able to get the best view of the back of my eyes and know the cataracts are from medication and not regular cataracts. I had to put off cataract surgery for a while until I can get my immune system back up as I was sick from December through January. And I'm scared that after I have cataract surgery, what happens if medication bothers my eyes--will it cause infection and festering of my eyes and I eventually go blind? I try to be happy and look to the positive, but I know medication impacts my eyes and no one can tell me what the future holds.

    Just today I finally talked the HMO primary care doctor into referring me to a Rheumatologist (the specialist who handles lupus) because for the past year I wanted a specialist involved and maybe he can change some medication that would protect my eyes.

    Being disabled and having various disabilities, I try very hard to always wear a smile, say hello to people I pass by, and be so independent that I can live alone with my beloved two cats (that are like doctors). I am truly blessed by God to have a happy spirit, and be blessed by so much and be especially blessed with these wonderful cats that help me and take care of me every day.
  10. Doznclan3

    Doznclan3 New Member

    Ahh, thus the reason for your screen name..that's great. Animals can really bring a happiness into our lives that sometimes no one else can. I have dogs. I used to have cats in the past. My husband of today is allergic.
    Yes, you are truly blessed to have a happy spirit. Not everyone can get by with so much going on, with a smile. I try to do the same. Some days are easier to smile than others. But today, :))
    I'm not on much medication. I do give myself B12 shots. Helps a lot. Plus take Trinsicon..the iron and B12 mix.. I don't take any type of narcotics, can't handle them, plus I don't like the way they make me feel. So, I'll just have to do the waiting game on the eyes. I just wondered how you were doing with yours. I understand that's one of the main concerns with MS. I know I'll be ok, whatever happens. Knowing the Lord, helps me with understanding.
    I love your positve attitude! :)
    Take care, love, Cynthia

  11. TwoCatDoctors

    TwoCatDoctors New Member

    Yes, my screen name reflects my cats because they are "Two Cat Doctors" who take care of me.
  12. TwoCatDoctors

    TwoCatDoctors New Member

    Of course they are not doctors and I call them my doctors jokingly because they are there so much when I am sick and help me through--they are both certified and registered service animals and therapy animals. There are no cat training schools so it required me using positive reinforcement using love, love love and lots of petting and telling them they are so good. It was a slow process to accentuate the good things I wanted them to do and ignore the other things. So they quickly learned. Also with using love and petting, when they go out in the scooter basket, people want to see them and pet them, so it reinforces how GOOD being in that scooter basket is. You have to find out what a cat's currency is--some what treats, but my two flourished on love and love was what I used in training other animals I had.

    They are service animals in some of the tasks they do for me. I have talked to other disabled and many of their pets sense they are disabled and with some pain and seem to offer more help and that may possibility be the basis--that the animal can sense the pain and disabilities, whether it be through an electrical field, an aura or whatever senses that animals have and pick up.

    Shelby signals me to people at the front door--someone stole my doorbell, so I'm not putting up another one to be stolen. Then my cat Cesar alerted me to people outside after 9:00 pm and I hadn't heard them. When I turned off the TV and listened then I heard them. By the time I got up, put on the outside front light and then got to the window blinds, they were gone. Cesar got so much praise for that. Shelby is excellent at recognizing that I am going into pain and need to stop and rest and she will "pester". Cesar at times has just flopped over onto what I was working on at my desk to make the point that "we said it is time to rest" and I obey. If I don't pick up on signals, Shelby will grab my pant leg lightly with her paw and some claws and shake it. I watch for signals from them. I also have them trained to come to a dog clicker and I did so they come to me for whatever reason and also in case of fire and I was choked from the fire and couldn't speak, the clicker would be heard and they would come and get out safely.

    Cesar is also my pain management techniques partner and that way I don't have to take the pile of meds and narcotics they wanted me to take after I had been in the hospital for a week. I refused to take all that stuff and knew there was a better way but it took some time to find it.

    When I have migraines and lay down, Cesar seems to sense it and instead of his normally jumping up on the bed, he carefully gets up on the bed so I don't even know he has jumped up and he lays his body over the top of my head. His warm long fur, his vibrating purr, it feels so good. And then Shelby lays right by my stomach and sometimes on my chest during it all so she is there with me.

    During a bad lupus flare, I had fever, migraine, really bad aching muscles like flu and I went to bed. Cesar came and laid up against my head and I told him I was so sick. But with that vibrating purr and that warmth of his fur, then Shelby right there, I actually fell asleep for the night and awoke to them in the same position. Getting some sleep really helped.

    Any time I am sick, they run to bed with me and are there. If I am just tired and go to bed, they may not go to bed with me.

    Having them in scooter basket actually lowers my stress level. I have to attend an agency meeting once a year and the stress of it would have me vomiting. I take Shelby in the scooter basket and I pet her and the stress reduces and I no longer vomit. After I had 3 different incidents of attempted (and unsuccessful) robberies of me in parking lots, I could no longer go out of my home. I did NOT want anyone to take me to a store or the store to walk me in or out--I wanted to do it by myself as I try to work out of everything myself but I had so much fear. I eventually went to stores with a cat in a scooter basket and having the cat there gave me confidence, and made me feel I can do this and get through it.

    When I had my back in such pain, I had done too much and was ready to scream as the pain was so severe. I called out "Cesar, help, my back is bad" and he came running up to bed and we started the pain management.

    Both cats are Ragdoll breed and are very much interested in what I do, stay with me in whatever I am doing throughout the day.

    My cats have been seen by the therapist, the City's Social Worker, by the HUD agency, by support groups.

    [This Message was Edited on 02/18/2009]
  13. Doznclan3

    Doznclan3 New Member

    That is incredible!! Wow. You have done something wonderful. There are so many people out there that would love to have this with cats. There are so many dogs that do things for people, but haven't heard of cats doing therapy. I've heard of cats saving people's lives from fire, by jumping up on the bed and being pesty until they awaken, or, trying to wake a diabetic person. Of course they can do therapy, why not. They are a very smart animal. More independant than a dog most of the time, but as you said, with love and treats, anything is possible with them. Just last weekend, after the big move for my handicapped sister, I was feeling pretty bad. My legs went into the not wanting to move right mode. I had stressed over this move for her pretty bad. Stress will get me as bad as any "over doing it" will. Well, I was sitting there on the couch beside my husband, letting him know how I felt. Over comes Sophie. She layed her head on my legs. My husband said, "Look, she knows." Her big brown eyes just kept looking up to me..big sad puppy dog eyes. I chuckled and gave he loveys. She just stayed there until I got up. How in the world do they know?? She is more of a people dog than my other dogs. These dogs are not sissy dogs, believe me! They are actually retrievers. My husband works swing. I love her deep deep bark, she sounds more like a male. If that doorbell rings, or someone knocks, she's right there, sounding like a St. Bernard! Sometimes when I can't sleep, I just sit in the front room recliner until my husband comes home. Boy, when that key hits the lock, she's right there at the door with her loud bark. She lays at my feet wherever I am. So, if I knew how to teach her, I'm guessing she would be a good therapy dog. She's very protective of me. I used to rescue and train dogs..when I was able. I miss that. I've just trained my three for me now. Good dogs, but Sophie has shown more love for her family than the others...especially for me. If she has been let out, then once back in, she runs all over the house until she finds me. Animals, can be such a comfort. I've also heard that fish tanks are very soothing. Thank you so much for sharing your inspiring story of your cats. I'm so happy you have them. Give them some loves, and tell them that they're from a new friend. :)
    Take care, love, Cynthia