Chronically ill mum feeling like a complete failure most of the time!

[Blessed1501]

I suffer with a chronic pain condition that leaves me in absolute agony most days. I rely on strong painkillers constantly and need to sleep a lot during the day. Despite my son being at school and being at home as was too sick to work I am finding it really hard to meet my own standards and expectations on what I should be doing as a mother and as a housewife. I feel so guilty when my partner comes home from work and has to help me clean the house or cook dinner. I hate that I can't take my son out as much as I would like and that he has to see me in this state. I sometimes end up just leaving mess and making him a light picnic time tea for him to have in bed with me while we watch Netflix, colour or read books, he also sometimes brings his toys in and plays with them there. I wish my health was better but that is unrealistic. Need some methods of managing all the responsibilities I have without overdoing it physically or ending up feeling shitty about myself. I love being a mother but feel like I am so restricted and letting him down. Is anyone else in the same boat?

[MatildaTheCat]

Sort of. So great sympathy to you. My DC have left home so it's just me and dh. I'm also perhaps less severely affected than you because with Pacing and drugs I do get out and about. However, I do need to rest a lot and things like cleaning and shopping are mostly left to other people.

Would it be possible for you to get to the sofa for your ds when he gets in? I hate my dh to see my lying on the bed all the time so I try to be up when he gets in.

Are you getting DLA or PIP? They would help to pay for additional support with cleaning and buy in good but quick food. ( sorry you may not be in the UK)

I think it's a question of picking your priorities and working on getting those things a little better rather than tacking your whole life. It is depressing and awful. I've also had good support from two Pain Clinics. I did a Pain Management course which was beneficial in some respects. Also finding online support has made me feel much better because it is so isolating to feel like you are the only one suffering like this. You are not.

Hope that helps. If you have back pain amongst your problems feel free to join us on the back pain support thread.

[icclemunchy]

I could have written your post except I've a 9month old as well as school age DD.

It's a struggle but I prioritise being able to collect DD from school (4min walk each way for DP and 15 for me) I then often need to have a nap when we get home but she's happy to chill and colour/ play in her room. I can then manage the kids dinner and DP sorts ours. I've found life generally much easier now I've accepted that I just can't do normal stuff, it helps that DP is supportive of me doing things I want to if I find a bust of energy rather than doing house work.

Have you seen a pain clinic? I'm still waiting on a referral to mine, I'm hoping they'll be able to get me sorted so I don't crash out every evening or 2/3 days when I try to get stuff done

[Blessed1501]

Thank you for your reply, I am sorry you are going through the same thing but it is a relief that their are other mums going through the same thing.

I have been to two pain clinics one was a bit rubbish and then I got a referal to university college London hospital pain clinic and it was amazing. I did a pain management programme called link and it did help in some ways. Just struggling to prioritise the time for myself to implement the strategies etc. Like you I put all of my energy into things like the school pick up, making my son food and bedtime routine etc. I wish I knew how u can manage having two. I would love to have another child but don't know how I would cope and it breaks my heart. Waiting now until January to see a rheumatologist specialist but feels like a lifetime away.

How does your oldest manage and feel about you being poorly? Mine is really good about it all and doesn't really know anything else. He unfortunately is too used to going out with my partner or my parents, friends etc while I rest. I just feel like I am missing out.

[icclemunchy]

I'm not sure how I manage two either! it's starting to get harder now the youngest is more mobile! I'm lucky to had a fab childminder she goes too a few sessions a week. She was an unplanned pregnancy and luckly quite a few of my symptoms Eased off whilst I was pregnant

My oldest finds it hard. She's only 4 so has just started school which makes it slightly easier but weekends are really difficult. My DP often works 7 days a week now I can't work so I'm left with both of them on my own. Routine helps, she does ballet so I its have to get us all dress and there and then she'll usually be content to do some craft or something whilst I rest. We tend to days out at least once a month even though they wipe me out for the rest of the week she feels a bit less left out then.

Do you have a narrowed down diagnosis or are you like me with the broader chronic pain syndrome label?

[Maiziemonkey]

I don't know much advice butcan offer sympathy and know whereyou are coming from. I have had chronic back hip and pelvic pain since 6 years ago whn i got pregnant with my son but have recently been told it is fibromyalgia- which many do not think is worth knowing as it is not well understaood but the doctor at rheumatology seemed to be very positive it could improve more by knowing and having slightly different treatment and management. I often have to lie down in the day and I know you can feel very guilty about taking time out but you are being good to them by being good to yourself. We cannot know how other see the world but we know kids seee it very differently to adults, so sometimes things you notice they won't. I felt quite low from finding out my diagnosis, but this week I am trying to think about the things I am happy to have, do some mediation(i like doing it but find it hard to stick to doing it regularly) and get some gentle exercise like yoga/pilates. I am also trying to do little tings with the kids- eek out 5 mins here or there to blow bubbles, make a cake or watch a show with them- busy lives make it easy to miss those bits for too long and it brings you down. A small thing can do alot to keep spirits up- you know what things give you a great pay off, whatever they are do them more! - easy to say but hard to find time and energy i know. What things are hard at the weekend? can they be adapted to not make you worse pain or somehting similar, kids can be very skilled at adapting, mine are 3 and 5, they do brak your heart when you cannot lift them or whatever but they will do things differently if you show them, sorry to hear you are in so much pain, hope the MRI gives you some info