should family sometimes shoulder the downs of ms

Hello everyone, sorry my subject title is not very clear, let me explain, firstly at last i can get on here. Hope people have not been put off like gerard has coming on here. Well the title is a little confusing but here goes my worry. Gerard is now on facebook, ok fine he doesn’t mention about his ms. He has been on facebook for some time and no member of my family or his family have put anything in his inbox. In other words they don’t start a conversation with him, its always gerard that has to make contact or join in. This is the case with both our families. Now that gerard is on facebook its like ms is forgotten. I know everyone would like to escape from this but in reality we can’t. When he reads other peoples lives and messages, he moans at me and says ‘yeh wish we could do that’ aren’t people lucky '. I have been nothing but supportive towards gerard and explained to gerard that the reason some people (mainly family and i have been told this by my sister a few days ago i rang her) don’t talk to us is that all we have going on in our lives is just bad health and that they don’t want us TO BRING THEM DOWN. I would not mind but we hardly talk to them in the first place. I am SO ANGRY. Its not our fault we can’t go driving here and there and do exciting stuff all the time. The little one does get forgotten about and other non family members get taken out a lot more. Our little one not been out all summer apart from two football matches IN A YEAR and thats only because we made a fuss about him not being taken anywhere. What family don’t realise is that when we do get to go out. Gerard sits on a bench all by himself and i have to take the little one round a mini golf place or something. We get back he goes to sleep the little one goes to play his PSP. Me i am stuck in the kitchen. There is nothing to look forward to unless families can make the effort. Should they once in a while make the effort with us? as we try with them without saying anything. There is only so many times i can say ‘i am so happy for you about whats going on in their lives ’ before my grin starts to crack. I explained that some people are so selfish and they should think not of how they are feeling but spare a thought for how gerard or me is feeling in other words think not of being brought down by someone but that you are lifting someone elses spirits for a change instead of your own as we try to. Well, it seems that he does not talk to them about the odd ms stuff anymore but other things, fine, guess who gets talks to me about the ms. I do listen but should family sometimes shoulder the downs of ms too ?. Why should he chose to alienate me now, i am here all the time but i have interests too. Wants, desires, needs…etc. My family and his family can be so ignorant at times its unbelievable. Also before anyone can say ’ why not get a job’ please let me make this clear. I am 41, looking after 3 people each with their own difficulties. There is no money to pay for a training course (care worker course costs 1,000 upwards) all free computer courses are aimed at ESOL people. All voluntary work needs references (fair enough who do i pick as one must be last employer) yet childcare is an issue as cannot commit during school holidays. Cannot afford childcare and also asking relatives is a no no as they would want money like last time therefore working for nothing except a reference. Somebody please please give me a straw, as i don’t even have that to cling to :now. :cry: love sandra. Helena i have lost you on here.

Hi Sandra
sawjd wrote:

Hello everyone, Also before anyone can say ’ why not get a job’ please let me make this clear. I am 41, looking after 3 people each with their own difficulties. There is no money to pay for a training course (care worker course costs 1,000 upwards) all free computer courses are aimed at ESOL people. All voluntary work needs references (fair enough who do i pick as one must be last employer) yet childcare is an issue as cannot commit during school holidays. Cannot afford childcare and also asking relatives is a no no as they would want money like last time therefore working for nothing except a reference. Somebody please please give me a straw, as i don’t even have that to cling to :now. :cry: love sandra. Helena i have lost you on here.

about references; if you don’t have a previous employer it is OK to get two from people who know you well (GP/pastor/whatever) as in your pplication for voluntary work you’ll have made it plain your experience is life based not work based. There are some volunteer recruitment agencies; don’t know if thre are any near you though. Actually someone mentioned just today seeing a request for hospital volunteers at the local Job Centre. The thing about volunteering is as you are giving your time for nothing then there has to be a fair bit of flexibility on the other side eh! Why is it people don’t want to listen, even the close ones is just so frustrating - I find myself biting my tongue and making out all is well because I don’t want to see to look of haunted panic in the eye of the person I’m talking to. As for family, yes I know they’ve got other things going on outside of me but it would be nice if I was included sometimes! There seems to be an unfounded fear that if they do something for us once they’ll have to keep doing it - which we both know is total BS! Drat it we are family, a lot of guff is made about ‘fambly’ but don’t expect anyone to act on it!Arrrghhhh - I started off with the aim of sympathising and easing but unstead I’ve ranted! :roll: Clarexxx

It is awful when you see someone you love reaching out to people he should be able to rely on for support and getting very little back. I don’t have children, so I don’t know, but I would guess it’s the same feeling with bells on when your child is being ignored in this way. I am sorry it is all being so difficult. Should they sometimes shoulder the downs? Well, maybe so, but you don’t get very far with life it you expect people to do what they ‘should’ do! Some people, anyway. And your lot do sound as if the effort of expecting them to do what they should do is unlikely to be rewarded. I think it’s good that you can get annoyed about it - rant away! Just as long as this is not accompanied by expecting them to change. In my experience, people rarely change, they just get more so. Hoping that people will start behaving better is a sure-fire recipe for disappointment, I think. Maybe you need to be a bit tough about this. Just stop expecting anything much from them. And I do completely agree with the poster who said that people sometimes seem unwillng to help because they are terrified if being sucked into some regular arrangements. My advice? (a) have a good rant about them. (b) say 'sod ‘em!’ Loudly. Alison x