Fm and explaining to my young son

[Koneill]

Hi I am new here and I have fibromyalgia and a parent to two beautiful boys. I was diagnosed a while ago but have only recently started looking into fm as I feel like I am not getting the support from my doctors. My problem is my sons are two and seven and I am finding it hard to explain to my seven year old why I am not the fit and active mother I used to be. I also suffer from depression and anxiety but it is really getting me down at the moment as I can't do the things I used to with my boys. Some days I have pushed myself just to keep the peace and have ended up in agony for days afterwards. I feel like I am letting them down as I am only 30 and can't find an easy way to explain to my children that some days mummy can be fine but other days I might not be able to move its breaking my heart as when he asks me to show him my sore bits there is nothing there so its also hard for my son to understand. If anyone could help please do so. Thanks

[Koneill]

Thank you so much for reply it is hard explaining to anyone I feel never mind children. I have my boys in a set routine so i have time to myself to relax at night but at the moment my sleep pattern is terrible as i am constantly worrying about how i will feel the next day and how i will cope. My doctors arent much help and this is the reason why i have been investigating for myself I would try anything just so i can play with my children like i used to.

[Koneill]

I forgot to add I hope you are well and to take care also. Thanks again

[dannyxox]

Hi Koneill I understand where you are coming from as Ajay says don't try to much with them pace urself. My son is 12 I've had it 4 years he understands now that I can't do as much as I used to and it's hard bcoz you can't plan anything as you don't know how you are going to be on the day so we take weekends and free time as it comes if I'm having good day I try take him out and about cinema ect if bad day we play his xbox or have movie days in bed. Kids will learn to adjust ur doing a great job don't feel bad xx take care n remember to pace urself 😙

[fusedesigns]

Hi there. So sorry you are going through this- it’s so tough battling this with kids( mine are 5 and 9), and you are still in the tough preschool stage with one. I am still looking for answers too. My limited advice being a year or so down the line would be:, SERIOUSLY Pace yourself- I rest when the kids are at school (or were at preschool) so I can be as upbeat and enthusiastic about everything as possible and then I go to bed pretty much when they do!

I now know not to take on too much to do in one day including medical appointments, shopping, social stuff etc - it just isn’t worth it. If people don’t understand refer them to spoons below...

Try and make sure all the folk around you are as knowledgeable as possible about your condition and use them to help you and remind/help your children. Look into Spoons theory- really helped family members and my 2 kids understand -mite work for your older child... it is really tough having a sick mummy and as a lone parent I am all they have. I have enlisted professionals like my OT to help explain things too.

Get all the money help you are entitled too! I use my PIP money to buy in help for myself eg cleaning, so I am less tired for my kids, and some childcare help so I can pace myself during holidays. I also pay other people or get friends to do the activities I used to with my kids- eg a guided climbing session at the gym, a sports lesson/club etc. It is utterly depressing and not what I wanted for my kids childhood but better than me going under!

I try to focus on what I can still do really well -family snuggle time in bed, chatting about their day, lots of books, watching a film/series together, games, puzzles, art work- all in small doses with rest between...

There are wonderful folk out there that want to help if you can accept it. I have had too, and now try to think of small ways to help them back within my pacing schedule. Eg, i can just about manage to take friends kids to the cinema( sitting down ) and for a swim in my hydro pool ( they are older I know so this is tougher for you). Flowers, choccies, a really good frothy coffee and a listening ear count as well!

Find some excercise to do slowly and gently at first even for 2 minutes and build up- those endorphins are the key, I am convinced- all I do right now is go to a really warm hydro pool and move around gently for half an hour but it is like a meditation for me and helps with anxiety and low mood. I also walk a little ( not far as have RA) to get kids to school when I can.

I use medication strategically. I have fibro and RA and plan ahead to have a steroid injection if I know I have something big. Eg my kids love camping- it’s exhausting even if not sick so I found somewhere to stay with a tipi I don’t have to put up, I make food beforehand and make sure kids bring lots to do.

If u can, and I know it seems hard cause everything is an effort, look into dietry changes- it has made a difference to me and when I slip back I really feel it.

Hope some of this helps a bit- you can always reach me here if u need a pep talk. It’s really unfair you have this, so it’s understandable you are feeling depressed. Moving forward is very hard but finding a way through so you feel as though you are doing all you can with your kids is so important and that’s where finding the right help comes in. Good luck xxx

[phlebo123]

Hello, I hope it is ok to mention this here (May be classed as advertising) , but I have heard about a book called "why does mommy hurt?" by Elizabeth M. Christy which helps explain fibromyalgia to young children. It is available in USA, but I am not sure if it is available to buy in the UK (it may be available online).

Also there is a comic book called Fibromyalgia and us, which is written by Dundee university, which is available online and may be suitable for a 7year old as it has cartoon strips.I believe you can find it on the university website.

Take care xxx

[Shazzzy]

Hi there just wanted to lay you know Epsom salts in bath are very good for that horrible achy bruised feeling you get, you can also use magnesium spray from chemist straight onto your sore bits. I find it really good to have bath at night and if I need more I use the spray before going to bed. I found it easier to explain to my young daughter than some adults, if your sons ask to see your sore bits point to them and yell them the muscle under the skin is really sore. You could show them how their own muscles work and say mine are not as strong as yours and get sore and tired very quickly. You could also tell them how lucky you are to have two strong boys to help you, most young boys jump at the chance to show how strong they are !! And can help you by fetching carrying etc. All the best

[Dizzytwo Moderator]

Hello Koneill I would just like to add my warm welcome to our lovely group and it's fantastic members It is always difficult when struggling with a chronic illness and raise a family that's for sure. But many do and make a wonderful job of it and I am sure you will too.

Things were way different when I became ill over 30 years ago but I manage to raise two children and I don't believe they suffered for it. Sometimes i think children are more understanding and caring than we often give them credit for. But has a mum we always worry it's just what mums do isn't it.

May I say if you would like to lock your post to keep what you write private to this community only. This link will show you how. Also most members prefer to answer only locked posts

healthunlocked.com/fibromya...

You may find our main website very helpful it has loads of great information.

fmauk.org

If there is anything you need help with please just ask me or any of our admin team. I hope you have a very pleasant evening

Momo

[aaron1234]

Hey, I know there is a book you can buy to read to your kids. Also, have you considered CBT? you should ask your GP about a referral. Good luck and see link below

amazon.co.uk/Ravyns-Doll-Ex...