Grief and being a parent with CFS

Jemima37

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I don’t want to be negative but I needed to empty my mind and maybe other parents can relate to this pain.

I was diagnosed with CFS in 2017 after being unwell for 18 months. Prior to that in 2012 my brother assaulted me and police were involved as he assaulted me in a police station where I ran for help after he chased me in my car. As a result my mother and sisters gave me 2 years of abuse as I refused to forgive him, I was accused of splitting up the family and basically his violent ways (he was always very violent, many times he hurt me, his sisters, his kids, my husband, his partner etc) were never spoken about, I again was the one to blame. My whole childhood had been like that.

Anyway after the assault I suffered ptsd and anxiety, I struggled to leave my home. I had therapy and overcame some much and kept going for my children, who at the time were 10, 8 and 7. I wanted them to still have childhood memories so I pushed and pushed to go on holidays, days out etc despite the anxiety. By 2015 I felt happy again. I was doing so well.

Eventually by 2016 my body was broken. My gp then put me through hell with testing and kept saying I was just depressed and wouldn’t believe I was ill. I changed GP and she said I’d suffered a huge trauma with my extended family, and I had to walk away from my family for good, My GP said I’d pushed myself to give my children the best so all the stress eventually broke me, hello CFS.

I still kept pushing in 2016 and 2017 but then in 2018 I had the worse CFS crash and was bed ridden for a year. I was so poorly. Then slowly I improved but I still now rest on my bed each day, do little jobs when I can but hubby still does most of the housework and cooking. I’m also still housebound as I can’t walk or stand for long periods due to CFS and possible pots. 2019 was a good year as I was very active again doing 70% of the housework and went out a few times and I’d sit in the garden. Then last year the stress of the pandemic set me back again. I’m not back to 2018 but I rest so much again especially recently since expediting long crashes again.

My children are now 18, almost 17 and 15. I have thousands of photos of their childhood, of all we did together but I can’t look at them. I made a video of their childhood 2 years ago with a beautiful Taylor Swift song, Never Grow Up. If I watch it I sob uncontrollably. I feel I’m grieving losing their childhood. I feel I’ve been robbed of the last few years of them being little. I never got to take them to the park and push them on the swings one more time, take them to watch a kids film, and anything else we did together when they were little. The last 3 years I’ve been housebound and they’re now grown ups pretty much.

I look back at the video and photos and sob, it feels like grief and I can’t go back and get that time back. It’s a horrible feeling. They’re my world. I lost most of my 30s because of what I went through. I’m now 41 and feel I’ve lost most of my life and now feel I’m old and lost precious years.

My children are my everything, my heart beat but I’m so heart broken I lost the last few years of them being little. I’m glad I’ve all those memories and they remind me of how happy my children were, I should never beat myself up as a parent because they’ll never look back at their childhood like I do mine. Mine was filled with abuse and fear. I know I’m a good parent and my children are so understanding and beautiful people, but these 3 years I’ve not taken them out, not attended meals for birthdays etc and I’ve been the mum resting on her bed or worse like in 2018 when I was severe with CFS. Also in between there are better periods when I still rest a lot but can potter about doing jobs and seeing my family more. I do beat myself up for these 3 years as I’ve not been the mum I was to them. They’re much closer to their dad now which is lovely but I miss being the mum I was. I know they still love me but this awful condtion has affected my relationship with my kids because I can’t be the mum I was 😟 Lately I’m in a dip as had 2 major crashes since November, it’s been hard. In 2019 I thought I was on my way to being that mum again, then the pandemic stress hit hard.

I just don’t know how to deal with that grief and be able to look at the photos of our good times without crying. I just needed to get this out of my head as it’s something I’ve struggled with the last few years but struggle to voice it. Maybe other parents with CFS will understand. Grief gets us in many ways.

It’s taken a lot for me to post 2 photos of when they were little and when I could take them out, and a photo from Christmas Day recently. I need to make myself look at the happy photos without feeling sad.
I’m sorry this is long, I just felt I needed to get these thoughts out of my little head haha.

I hope you’re all ok and staying safe.
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Wayne

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Hi @Jemima37 -- I'm sorry you're going through such a difficult time. -- There's much I could say, but will restrict myself to just one point. I think it is wise to never underestimate the value of children seeing and experiencing the sometimes difficult realities of life, and learning empathy in the process. When everything is peachy dandy, children sometimes don't learn to appreciate the sometimes more subtle, important things in life. People who experience the most adversity often end up progressing the most spiritually. -- Sweet pictures! :)
 

Jemima37

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Hi @Jemima37 -- I'm sorry you're going through such a difficult time. -- There's much I could say, but will restrict myself to just one point. I think it is wise to never underestimate the value of children seeing and experiencing the sometimes difficult realities of life, and learning empathy in the process. When everything is peachy dandy, children sometimes don't learn to appreciate the sometimes more subtle, important things in life. People who experience the most adversity often end up progressing the most spiritually. -- Sweet pictures! :)
I agree. Very wise words.
I had a difficult upbringing but it taught me so much. It taught me to love, be kind and it drove me to be the best parent I could be. My children have too faced difficulties seeing their mum unwell and losing my extended family (which none of them have really been upset about just more angry at the way the family treated me as sadly they witnessed my brother one day assault my husband out of the blue). This is why I cut my family out to stop my childhood abuse being continued onto my own children. It’s very sad as my niece and nephews are still living it and seeing such awful things, they tell my son what happens and it’s awful and sad. At least my children have come through this strong, and they’re such good, kind people.

Thank you for replying to me 😊
 
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I don’t mean to in any way belittle your grief (I’ve lived with the grief of severe ME for years now), but when a friend got ill recently it changed my perception slightly. She is 41, and has been given three months to live. Her children are both under ten.

Don’t give yourself a hard time. It’s not your fault you are unwell. You’re doing your best. Even if you can’t do much they probably enjoy your presence. Children can learn from illness. You feel like you’ve missed out, and it hurts, but you’ve always been there for them, and that’s what matters.
 

xebex

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I hear ya! I have a 7 year old and I cry too when I look through photos of us doing stuff together, luckily I was still well enough to be able to teach her to ride a bike (she learned at the age of 3) but I got much worse shortly after that, I’ve missed her learning to ski, and swim, I’ve missed seeing her laugh and play at parties, I’ve missed out on vacations with her, I can’t play anything with her that involves sitting up, not even board games. She’s developing anxiety because all she sees is sick mummy and she keeps asking me if I’m going to die. It’s just awful. However something I have learned is that it is OK to cry, give yourself that time and space, sit and look at those photos and cry and cry and cry. It is OK you are allowed that space and those feelings.
 
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Sorry to hear that xebex. Sending some love and sympathy through the internet as I do not have children and can't imagine how rough that must be wanting to shield them from the nastiness of this illness.
 
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I don’t mean to in any way belittle your grief (I’ve lived with the grief of severe ME for years now), but when a friend got ill recently it changed my perception slightly. She is 41, and has been given three months to live. Her children are both under ten.

Don’t give yourself a hard time. It’s not your fault you are unwell. You’re doing your best. Even if you can’t do much they probably enjoy your presence. Children can learn from illness. You feel like you’ve missed out, and it hurts, but you’ve always been there for them, and that’s what matters.
Thank you so much.

I am so very sorry to hear about your friend. That’s so awful for her and her family.
 
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I hear ya! I have a 7 year old and I cry too when I look through photos of us doing stuff together, luckily I was still well enough to be able to teach her to ride a bike (she learned at the age of 3) but I got much worse shortly after that, I’ve missed her learning to ski, and swim, I’ve missed seeing her laugh and play at parties, I’ve missed out on vacations with her, I can’t play anything with her that involves sitting up, not even board games. She’s developing anxiety because all she sees is sick mummy and she keeps asking me if I’m going to die. It’s just awful. However something I have learned is that it is OK to cry, give yourself that time and space, sit and look at those photos and cry and cry and cry. It is OK you are allowed that space and those feelings.
Thank you so much.
I’m so sorry you’re going through this too. I guess I should be grateful it happened to me when mine were a little older so I do have some memories. In some ways that is easier I guess, I’m so sorry for your grief. It’s awful. As a mum it really is so painful. I try not to look at the photos very often because it just causes me so much pain despite them being such wonderful memories.