1. I was living in an inaccessible one room apt on a noisey alley. I had been unemployed about 2 yrs and my car (my mobility aid) broke down. The only place near me to get food was a liquor store and an ice cream shop. I was feeling very caged in because I couldnt get anywhere without my car and was becoming more and more isolated. Finally I approached my parents for help. My fathers answer was to "just move closer to a grocery store". He didnt think about the need for social contact, nor the fact that I didnt have the money to move, nor the fact that I was falling deeper & deeper into depression.
2. My brother is in a high position at (a computer company). I
had told him several times how helpful a computer would be for me in order to
read and write and keep track of things I needed to remember. Even though he
makes a real high salary and has an "in" at the company, he wouldnt
help me get one. (later he tried to tell me I had made a poor choice when I
picked up a used Mac!)
3. Years after the above grocery store story and after my father died,
my mother found out my phone had been temporarily disconnected and my wheelchair
was falling apart. She now is sending me $100 a month to help out. (She can very
well afford it)
It's hard to tell. Our family was never a close one. Also when I was very young I somehow got the impression that illness was bad and had to be hidden. Even yet my mom doesn't tell anyone else in the family. She says it's "none of their business". My father was never a daddy, but I got the impression that I either disappointed him or proved his suspicion that I was a loser. I think it was easier on them because we were never close, but it sure was harder on me when I was going through the early stages and didnt feel as though I could talk to them about it.
I am always so tired. I no longer am capable of doing EVERYTHING, which involves working outside the home, going to college at night, finances, cleaning, cooking, shopping, planning and carrying out all functions involving family get-togethers. My family (husband [of 26 years], daughter [22 yrs. old] and son [19 yrs old] believe they are truly helping when they say "lay down - clean that tomorrow when you're feeling better" Do they really think this is going away?
I was initially diagnosed in February of this year - after I ended up in the hospital with the total loss of sensation and motor skills in the left side of my body. My family was devastated - I had the Big M.S. - I was glad to know what was wrong. However, I "looked so good" and family and friends soon forgot that I am the proud possesser of a debilitating disease. I'm angry because I'm left out of things some feel will tire me, yet when it comes to doing everyday essential duties, they are sure I will be back up and running. I can't walk for very far before my leg gives out, but I am learning how to manage. Why doesn't anyone ask me how I feel before making decisions that impact my life?
I don't know how this has impacted my family - but I will ask them and get back to you. We are computer disadvantaged at home so I will get their feed back - hopefully I'll get some honest answers. I sure don't want to project their thoughts - they all do enough of that to me these days. I really, really hate this!
My wife received the diagnosis with relief, thankful that she wasn't facing an inoperable and terminal brain tumor. She has faced her MS with amazing courage. It is starting now to cost her some mobility and has forced her to retire from a job that she enjoyed, but she does valuable volunteer service when she is able. She is learning to cope with increasing limitations on her strength. She has not avoided counseling. We are thankful that the chilren are grown and that they can be a source of support. We are learning to make day-to-day adjustments. She has joined a local MS support group. We have made major modifications to our home.
We have learned to make ajustments in our expectations of ourselves. Our family has faced other serious disfunctions. We have learned some coping skills and are learning still others. Our children are now grown and on their own, but their mother's MS has made them more aware of their need to offer her support.
My wife has Ms and can't walkand is somewhat immoble. Our social,martial,sexual and mental life are deteriorating.
It has dismembered it.
My sister is the one with MS. She doesn't talk to me very much about it. I know that it must be awful to deal with because I can't remember the last time that I've seen her happy. She is divorced and has two daughters that live with their father be- cause she was deemed unable to take care of them. This is the first thing I've really looked into something that concerns MS. I'm a recovering alcoholic and never really cared about anyone but myself, but now that I have the time and energy, I would like to get to know more about MS.
Being ignorant of the disease, I don't say or do much of anything about her condition.
My sister was put into hospital to receive treatment for an episode of MS. She was not able to walk again after this episode, and was given an electric wheelchair. She was not discharged from Hospital until the Housing Commission (Vic Australia) was able to give her a house. She was in Hospital for eight months. None of my sisters nor my mother who live near to her, I live 3,000 kms away, visited her. One of the reasons was that there were people who were amputees in the ward. When she came out of Hospital, because she was out of Hospital every assumed that she was ok. She has nurses come every day, yet still none of her family support her in the manner that I would anticipate that she would deserve. He husband has Sleep Apnea, and has his own stress criteria. They have three children, who are living in this situation and need respite. I feel for them, yet I live so far away. I spoke to a social worker when I was in the area the last time that I was there, and she spoke to my family, suggesting ways in which they could support my sister. This lasted for a small while. I encouraged this from the distance I live at. I encouraged words of thanks and praise. It was all too short lived. Such is the way that our families have disolved that we are not able to show that we care withour expecting the glory here on earth!!!!!!!!!! All of my family ignore or not mention the wheelchair and the catheter bag that she has now. When I was with my family for christmas, the first one in eight years, I talked with her about her chair, asking speeds and comfort, length of battery life, and recharging. I noticied that my sisters were listening, I found later that htey had not asked her about the chair. I was a nurse, so have a cruder sense of humour when it comes to some parts of the human functions. I made some jokes about her cathater bag and these were met with shock from my sisiters, but laughter from the one with MS. Another occassion I was offering champaign around and did not offer any to my sister, telling her that she was legless already. I was pulled aside by one of my sisters and told that I should not mention her disability as the tried not to notice. I told her that this was silly, as to notice the differences was one of the things that we do in this society. We know the samenesses, as she is still our sister................the point is still being debated. One of my sisters said that if she pulled herself together she would get better..................not even my powers of positive thinking would solve that one....
I think, as you would have realised from the writings before, that my family is living in denial of the situation. My sister needs yet is not getting the support that she deserves, either emotionally, or physically. This has meant that when I go to see them suddenly things happen for them. They have lifts offered, which cannot be taken as she is in an electric chair, and people talk about going to visit with her. None of it is good. None of it is right and I think that there should be greater support for the extended families of MS sufferers, so that they know what it is that they should do.