I suffer from a chronic illness and feel like I am not there for my kids as much as I want

Rebeca - posted on 04/09/2010 ( 13 moms have responded )

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I suffer from a chronic illness which means I am either in a wheelchair, or bed ridden with chronic fatigue. I have a 12 year old daughter who has just started high school, and a 9 year old son and I get depressed thinking that I am not being the best mum I can be to my kids, eg as I don't drive, I cannot take my daughter on girls days out shopping or to movies, and I cant drive my son to sports practice or practice with him. I have a wonderful husband (their stepfather) who drives them everywhere as well as caring for me full time so the kids arent really missing out on anything but I just feel like they are growing up so fast and needing me less, and I want them to grow up feeling close to me and like I was there for them as they were growing up.

My daughter and I have movie nights at home, with popcorn and dvds, or Beauty nights where we give each other facials, paint nails etc, and I still read to my son every night, but not sure what else I can do to spend quality time with them.

I would really appreciate any advice, especially from other mums suffering chronic illness. I ahve ankylosing spondylitis, fibromyalgia, chronic fatigue syndrome and sometimes suffer depression because of my illness. (I got sick 6 years ago). I have seen many specialists but they all believe my condition is permanent and I need to come to terms with it though I remain positive that there will be a breakthrough which will help me walk again someday.

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Sarah - posted on 04/09/2010

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Hey Rebecca - Firstly, can I just say how sorry I am to read about your chronic illness. It must be very hard for you.



Secondly feeling guilty about not being the best Mum is part of being a mum. I feel guilty for working full time, and not being there for them. I'd love to have movie nights or beauty nights with my kids, but I don't seem to have the time. There's always washing, housework or cooking that needs to be done.



It sounds like you spend quality time with them already and I bet your kids love and appriciate you for that. Kids are adaptable and more than anything they need to feel loved and have affection shown to them, and to feel they have parents they can depend on. Just keep doing as you're doing. Sounds like you're doing a great job to me.

Anne-Marie - posted on 04/28/2010

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rebeca from what i just read you are doing everything you possibly can for your kids. i'm sure they understand mom isnt't well enough to do all the things you've mentioned. but you do things with them that you're capable of and i'm sure they appreciate that. don't beat yourself up about it. like you said they're not missing out on anything, if anything they have something that a lot of kids don't have,a mom and dad that love them and do everything they can for them. get well soon.x

Louveda - posted on 04/28/2010

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It really sounds like you are doing the best you can considering the challenges you face. I'm sure your kids understand that & appreciate the gestures you make toward them. Continue being there for your kids....reading, hanging out etc. They know you love them. :)

Jayme - posted on 04/26/2010

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My sister is going thru the same type of thing she is bed ridden because of her back. Do you have family to help you. My sister of course has me I spend as much time with her 3 boys as I can. They just like to get out sometimes. I take them to the park or to the library. There is a service for big brothers big sisters. They will come eat with them and take them bowling. Your kids know you love them. being honest about how you are feeling is a plus.The more they understand the better. I have a daughter she is 15 but very young at heart. Maybe a pen pal will help. Let me know. Keep your head up mom.

Michelle - posted on 04/25/2010

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i have to give you great credit for doing what you are doing with your kids that is wonderful. maybe you could go out side in your yard and have a picnic. i also have chronic pain 24/7 i have a syrinx in my spinal cord and am possible looking a major surgery i have had 3 neck surgeries in 3 years i loose control of my legs and fall down and i start shaking uncontrolably. i have depression problems as well because of this. my daughter is 16 and she lives with her dad but when i have her we do the same things that you do with your daughter and she looks forward to it we have lots of fun. i don't go out of the house very much because of the pain. i have a wonderful boyfriend who helps me with everything around the house. and his son is wonderful too. we play board games ect. we have a big back yard and my boyfriend will help me outside on really nice days to just sit and we lay out a blanket and have a picnic with the kids. Also my sister just game down with fibromialga and MS she has to do injections twice a day and she has two children one is 14 girl and son is 3 and she does the best she can with them too. plays games,crafts ect. i hope you find this helpful and god bless you hun.

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[deleted account]

Hi Rebecca. I too suffer from fibromyalgia, CFS, ankolysing spondylitis as well as a host of other illnesses. I understand only too well how you feel... I have a blog for women who suffer as we do. It is called Sacrificial HomeKeeper. You may find my Lists for homekeeping with illness helpful. The link is here: http://sacrificialhome.blogspot.com/ Meanwhile, I pray that you will have some respite from your pain and some relief from the depression that afflicts us Sacrificial HomeKeepers with false guilt. Blessings, Glenys

Rebeca - posted on 04/28/2010

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Hi Jayme

It is great that your sister has you. I have always wanted a sister, I have a younger brother but we are not close, and my parents live a couple of hours away and we don't see much of my husbands family either but I live in a small town so there are members of my local community and neighbours I can turn to for help and we have had a lot of support (food parcels when I am too ill to cook, assistance with our bills etc) so we are very lucky.

Where do you live? I am in Australia. It might be nice for our daughters to correspond, I think it is good for children to connect with children from other countries and learn about different cultures and different ideas.

Thanks for responding to my post.
Cheers

Rebeca - posted on 04/25/2010

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Hi Michelle
Thank you for your kind words and support. I am sorry to hear about your condition. I can certainly relate and empathise with the pain you feel. It must be hard not having your daughter living with you but its great that you can spend time together doing fun stuff and its great that she looks forward to spending time with you, at 16 years old I didn't have any time for my parents. Teenagers can be so selfish and think the world revolves around them, I guess that's what I'm dreading, the day my kids are too busy to spend time with me so I am trying to spend as much time as I can with them now so I can save it up for later. lol.

I also have great support from my husband, and rarely leave the house unless its for medical treatment, but a few weeks ago I started volunteering at an animal sanctuary one day a week (4 hours), just answering the phone and typing funding applications etc, and I have started going to college one day a week also so after being housebound for 5 years, I am enjoying meeting people and learning new things although it is hard to get through some days, but I have a motorised scooter to zip around the college in which is much easier than getting around in the manual wheelchair.

I think it is important for my kids to see me actively doing things such as work and study to give them courage and motivation for their own journey through life. I think we all just do our best to get through the day and when I am in extreme pain and I start to have anxiety about spending the next 30 - 40 years in so much pain, I try to just slow it down and think just get through today and taking one day at a time is much easier to handle. Also, I would rather LIVE in pain, than not live at all, so that helps to keep things in perspective.

Good luck with your back, and thank you again for your support. I will send you healing energy at night when I meditate. :)

Rebeca - posted on 04/14/2010

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Thanks to all the mums who have responded so positively. I do know deep inside that I am doing the best I can to be a great mum and there are many children in the world nowhere near as fortunate as my children but sometimes you just need that reminder from other people that you are not alone you know?

I really appreciate all your good wishes and support.

Eve - posted on 04/14/2010

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I have 3 kids now 18, 16 and 12, I also suffer from bipolar, depression and ptsd so not only an I not able to spend time with my kids, I never know how I will be from day to day and have periods of proper madness.
I don't have all the answers but it sounds like you are doing the best you can,. when you think your kids are old enough explain about your illness and how much you love them and wish it was different but that you would do anything to help them enjoy the time you can spend together.
The spoons theory helps to explain for older children check out: http://www.butyoudontlooksick.com/articl...

For my own part my 16 yr old has recently rebelled against the family and moved out citing my illness as her reason and this has been very painful. However though it is difficult to live with, her main reason for going is that she wants to live a more liberal lifestyle with her friends.

I have searched out a young carers group which if you are i the uk are readily avalible, these groups provide activities, support and grants for respite.

Good luck and don't make it worse by beating yourself up over it, lets face it you did not chose to be ill.

[deleted account]

I do understand your emotional pain. I have 2 boys, 16 & 14, and I was diagnosed with multiple sclerosis 13 years ago. So their whole life I have been sick. I started by letting them know that on my good days I would do everything I can with them so they know. I think as long as you don't make your illness over shadow your whole life and take advantage of your good days with them it will be OK. Try to join groups and get suggestions from parents in your same situation. I joined the MS Society and that helped me tremendously. So don't give up and stay as positive as you can.and they will thrive. Oh yeah and remember they would complain with you where sick or not!

Laura - posted on 04/13/2010

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Rebeca,

I'm very sorry to hear about chronic illness. You are doing a great job in your current situation. I'm sure the kids know that you are doing the best that you can. Since it is difficult for you to go out, you could do a shop online at the computer with your daughter. Have her invite some of her friends over for a beauty night where all of you can participate in the fun. For you son, you can try playing video games with him or work on science kits together. My son is 9 and he is really getting interested in science and he always loves playing video games.

I have a friend whose husband has fibromyalgia. I understand it can be very painful. My friend thinks stress is a big part of making fibromyalgia worse. They moved to a small town and her husband's fibromyalgia has virtually disappeared. Try not to stress yourself out regarding your kids. We moms put so much stress on ourselves.

I will be thinking positively about your recovery.

Laura

Louise - posted on 04/13/2010

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I think you are giving yourself a hard time for no reason. You are there for your children when they need you. Mums need to spend time just talking to their kids to know what is going on in their lives. The fact that you are confined to a wheelchair does not stop you listening to their problems. It is so important to have the lines of communication open throughout childhood as the ground work now will keep you in good stead when the really difficult situations arise in their teens. Quality time comes in all different modes. You just have to make sure that your mode is to be there soul guidance. Hey the pamper nights sound great. You really are a great mum stop worrying.

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