I really feel for you. Please don't feel guilty, I think it's built into us to feel that way, but we shouldn't! Am sure your littlies will remember the sledging and not the other stuff. Also don't be so hard on yourself. IT must be sooo hard managing on your own. If you have good friends I wonder if they would actually love to help, how honest are you with them about how you are? I remember my kids being little, and working/studying and stuff was really really hard, I have a husband, when they were small he worked away a lot and I felt like a single parent sometimes, but actually being single must be massively harder! I hope that you have a good weekend and can get some rest. I can remember doing little indoor picnics with a DVD for the kids, and me under a blanket on the sofa being a must occassionally. Also I am sure there are leaflets or books available that can help to explain things to even young children in a non-scary way. I sometimes wish that I had not kept my disease so hidden from my kids as they grew up. Do you know what I reckon that you are a wonderfull mum and that your kids are a credit to you. Do take care of you too xxx

Also EVERY mum out there looses it with their kids at times, regardless of everything else you are coping with!

That's true enough, I think that any parent that says they don't isn't really being truthful. It sounds as if your being ill has actually brought about a great deal more dialogue and honesty than a lot of parents have with their kids

xxx

There's a book called 'What's lupus, Mama' on Amazon, & another called 'The fairy & the Wolf' available through the Despite Lupus Blog. X

its so hard being an active mum when you hurt so much and feel so tired i compleatly understand the guilt and frustration and then seeing disappointment on there faces when you say no i can t do that today and them knowing you proberly cant do that tommorrow either, for me i have good friends and family and a great husband and can t even imagine trying to do things without their help.
well done to you!!!! and don t be too hard on yourself.

my kids are teenagers now and are really helpful to me on my bad days, they really enjoy taking over and becoming the decision maker and bossing me around telling me to lie down and rest making me a cuppa and my daughter whos 14yr really loves to cook dinner and loves playing mum.
i used to feel terrible when i needed to ask if they could do simple tasks like washing up or walking our dog (when legs are sore)but now they ask me sometimes what they can do to help.i found being up front and honest with them about how i was feeling really helped them to understand but they are a lot older than yours.
please don t be afraid to ask for help if you can, sometimes we just dont have a choice but to except help.
take care

Thank you so much everyone it's nice to hear that others are in the same boat and feel the same way :0) we have had a lovely evening cuddles tea on the sofa tv and colouring :0) I talked to the girls and apologised we all had a little cry and said how much we love each other! I'm not honest at all with friends and family because they tend to sympathise and tell me how tired they are *sigh* I usually hide away when I'm feeling bad and get by the best I can. It's hard to ask for help as I am capable of doin everything that needs doing just not always when it needs doing, if you know what I mean?! This site is a god send its great to chat to people who actually do understand.
Thank you!!!!

((hugs)) so glad you had a good evening with your girls. I know what you mean about friends and family. I have one good friend, and a great husband and I consider myself soo lucky for that but even with them it's hard to be honest or too ask for help, also I think it's a kind of coping strategy, I do hope there is someone you can turn too if you need help. I agree it's great to be able to communicate and get things out here. xx

Brigsy,

I haven't yet read the rest of the comments left for you, because I felt compelled to reply immediately; this is something that I understand entirely, and I relate to your feelings of guilt.

On a practical level, do you have any help at home with housework and meals? A lot of people suffer for so long because they don't know to ask their GP to refer them to social services. It sounds frightening, but believe me, they are there to help you. Social Services have a duty to provide you with care. They will assign you with a Care Manager, and often they will pay money into a separate account for you to be able to buy in your own services. I struggled alone for years before I heard about this from somebody whilst I was out with my dog in the park. I don't think many GP's etc. know that this is a service they can tap into for you. So for the last three years I have been able to have the same lady, who has now become part of the family really. She wakes my children up for school, does some housework, changes beds and provides me with any personal care I need.

Instead of feeling guilt about the hot chocolate I think you should feel proud that you took the kids out in the snow! Things that are so easy for other mums aren't for us and I don't think we should compare. Our best is that, our best. Your children will remember playing in the snow more than they remember asking for hot chocolate.

I really do know how difficult it is, because as their mum you want to be on top form and run around and be able to do everything. It's so frustrating, painful and sad realising that you can't. If you were not such a loving mother you wouldn't feel sad about the things you can't do for them... if that makes sense?

I've spent years feeling guilty about the things I can no longer do, but as my girls are getting older (11,14,17) they assure me that whilst they recognise things haven't always been easy for any of us, they don't blame me. And, although it makes me sad and guilty when my 11 yr. old says she will make her own dinner, she doesn't see it as anything other than normal for us. I suppose, as they've got older we've become more of a team.

I'm told that children of parents with disabilities become more independent, more compassionate and very determined young adults. Now that's something we all want for our kids.

But do think of asking about a care manager if you don't have one, and also about asking for more help if you do. There is no shame in being poorly, it's not something we ask for, and it's not something we want.

Your children will love you no matter what, I promise. How old are they?

Much love, and stay warm. My hands are giving out now!

Annie x