Advice please struggling with 3 children fibromyalgia and EDS

[Strongshell3]

Hi, I'm hoping to get advice from any other parents out there that have a chronic illness.

I have three boys (10yr old, 4yr & 2yr) . I was diagnosed with EDS at the age of 30. I am 36 now. I triggered fibromyalgia after the birth of my youngest son, 2 years ago. I don't have much support and it's been a real struggle getting friends and family to understand how tired and fatigued I am.

My eldest son has EDS and Dyspraxia so he requires more help than the average 10yr old.

My partner and I recently separated because of his lack of understanding of my condition.

I would be grateful to hear any advice or strategies from any other mothers.

Thanks M x

[Hidden]

I'm so sorry you are going through all this, I understand your conditions (I have the same) but I don't have my own kids (I have worked most of my life with other people's kids but I'm single)

Its not easy to pace yourself during the school holidays, is there anyone you can ask for help? I would employ a cleaner for a few hours a week, at least if you can afford it?

You really have to pick and choose your battles and decide which things are the most important to do.

Planning is something that can help too, prepare stuff in advance if you got a bit of energy (cook twice as much and have a spare meal in the fridge/freezer for a bad day)

Being flexible with your diary helps too, if you have particular bad day, make it exciting for the kids without much energy needed: open the popcorn, close the curtains and have a pyjama movie day. Or phone some friends from the kids and ask if they can have a play date at their house?

Is your ex helping out with the kids at all? It would be great if possible so you can have some time to yourself to recharge your batteries.

Sending you lots of hugs, hope you get lots more tips and inspiration on this site. Take care

[Strongshell3]

Thanks for your reply.

I admit I'm not very good at pacing myself. When I'm on a good day I rush around like a mad woman trying to get everything done. But there seems to be more bad days so I have this constant growing list of to do's! Which just pressure and stress constantly.

I have began to learn to prioritise and let go of what's not important but I have to admit I still struggle.

It just so frustrating and depressing sometimes. I feel like I just want to do normal things .... be mum, take my children out without worrying if I can manage. Be able to do gentle exercises for myself a, take care of a house (basic level) and maybe meet a friend once a month for catch up.

I feel like that isn't wanting a lot from life, or maybe it is??? How can I meantlally lower my expectations?

One of my biggest depressive triggers is worrying what people will think. They will think my houses is a state? My children don't look well kept? I can't bring my children to all activities- bad mum? Not able to reply to constant mum what's app messages? (She's rude) the list is endless 😩

Gosh I feel like I right moaner but I get so upset that I'm just not able to do these basic things.

My ex is good at having the kids. The separation has given me more free time. For example he now collects the kids twice a week from school and gives them dinner. We have just started to alter weekends also. My ex doesn't have much understanding my condition, I do feel much better since we separated. He never have any empathy and I always felt judged. He would always critise if I asked for any help.

I do have a cleaner who I use when I can afford it. Mainly just to do the really difficult jobs that I know I just can't do. I have her once every two weeks for a few hours. I can't afford anymore than that.

Gosh I feel like I really have gone on .... which I didn't expect. (Sorry) . I really appreciate you taking the time to reply. It means a lot and makes me smile 😀. I feel like today is going to be a stronger day 💪🏻🙏🏻. I really am going to try lowering my expectations and working on not worrying about what people think.... any tips please let me know.

Thank you again.

I hope your feeling okay today. Sending hugs

M xx

[Sueculver]

Hi you really do have a lot on your hands. I've not got much advice but have a lot of understanding. I foster my grandson who is very challenging due to the way he was neglected and abused. Some days I just haven't the strength to cope with him. Nobody understands how exhausting fibro is.

I've always got a free ear tho, if you need to talk, take care Sue

[ButterflyPrincess1]

Hello,

I have a working diagnosis of M.E/Fibromyalgia and I have two young children (one under 5 and one under 10).

I can't offer much advice but I wanted to let you know that you aren't alone.

[notmebutme]

My kids are grown now but my youngest (20) is autistic and dyspraxic so I get 'challenging'. I'm also separated from their dad and they go to his every other weekend. One thing I have had to stop myself doing is rushing around during "my time off" getting jobs done while they're away and I bet you do the same thing right? Try very hard not to - use this time to rest and do nice things for yourself. Then hopefully your body is better prepared to cope when the kids return.

[Strongshell3]

Thank for replying everyone. I really appreciate it and feel comforted knowing I'm not alone.

It's good advice to try and rest when i don't have my boys. Im really am going to try and not feel guilty about it 🙏🏻

Thanks again for the replies.

Lots of hugs 😘