Aw bless you, that must be tough ! Hope you’ve found a balance in coping with the pain & fatigue whilst caring for your family ! xx

No matter what your situation or possible illness, as mums we all do the best we can. You are not failing if you are doing your best!

Hi JessyJade, I’m 39 with four kids aged 3-14. I have a very rare autoimmune condition called Idiopathic Granulomatous Myositis, characterised by muscle pain, weakness and fatigue. It has some similar traits to Rheumatoid Arthritis and Lupus. It started 9 years ago and took 9 months to diagnose, but it has taken years to adjust to functioning more days than I’m not. I can understand the fatigue you describe.
Housework: I needed to learn to prioritise not just housework, but prioritise energy. How I cope became finding what worked for me, and for my state of mind. If I have to use the dryer instead of the line, forget the electricity and praise myself the kids are in clean dry clothes. When I can, I cook enough in a meal to freeze half for a day I’m not well. If I have a visitor that’s worried my floor isn’t swept, I FINALLY have the confidence to point out where my broom lives – they’re there to visit me not visit my house. I don’t iron. I accept help when its offered. As long as my kids are safe, and fed and loved, the rest of the housework can wait. We can’t afford to pay someone to do household chores, so we prioritise and work around it. And as the kids grow, they will start taking responsibility for cleaning up their toys and clothes, and helping on the really bad days. And maybe look at are there any arthritis aids to help – I have a vegetable peeler with a really thick handle to hold, and a really thick pen to write with, and I’ve moved common items around to be easy to reach.
PAIN MANAGEMENT: I saw a rheumatologist to get my diagnosis, and continue treatment with him and our GP. As far as medication, I tried Methotrexate (NOT safe for pregnancy nor breastfeeding) but it eventually didn’t work for me. I take Azathioprine (also safe for pregnancy and you can breastfeed 6 hours after each tablet – I expressed to work around taking the tablets). In flare ups, I use Prednisone (I was on it full-time). And I’m on Tramadol SR for pain relief (slow release/ 12 hours, so less breakthrough pain). There are a lot of medication options out there, I had tried others but these are the longer term options I used. I get a blood test every month to watch for inflammation, liver and kidney functions, and others. And I am on and off iron supplements depending on my levels. NON-Medication: Hot showers, heat packs for pain relief, cold packs for muscle spasms, bandaging a knee/hand/ leg/foot for compression as pain relief, dark room with wet washer over eyes for migraines, massage (my 9 year old rubs cream in my feet which helps on occasions), pillows for support, NO pillows for support. I can’t sit or lie down in one position for too long or I seize up, so getting up to feed a baby at 2am was a dream, now I have to move every hour or so, even for a few minutes. Accept that you’ll have good days and bad, and what works one day, won’t work every time.
COPING: Rest frequently, accept your new limits. I am forever overdoing things. I need to listen to my body more, and to hubby when he tells me I need to stop. The short term gain isn’t worth the pain later. I’d rather read a book on the lounge with our kids rather than use that energy cleaning up and then have no energy left to spend with my family. We lost a lot of friends who couldn’t understand we couldn’t agree to going to a dinner weeks in advance because I didn’t know if I would be well enough. It used to make me feel worse but real friends accept you for who you are; my family is my world and I don’t need negative people around.
HOW OTHERS COPE: My hubby is also unwell, so between us we manage the important things. We support each other. We recognise that pain sometimes makes us a bit short tempered and that we have good and bad days. We are grateful we have each other and we have our kids. And the kids- kids accept life. They will love the fact that you are there with them, they will love talking with you, sitting with you, helping you with chores, playing near you. Some kids don’t have two parents in their home to give them a meal, make sure they are bathed, make sure they are safe and loved. Pat yourself on the back that you are the best mum you can be right now. My eldest came home from school one day, saying a friend at school was complaining that her mum had been sick for 3 whole weeks and she had to help do the dishes. I asked her how it made her feel and she said she couldn’t understand it, that she was 5 when I first got sick and she doesn’t feel she’s missed out on anything, and that she thought all kids helped (and should help) around the house.
Sorry this was long winded. I understand how tough can be. I’m finally back driving a car, walking without a walking stick, and doing more around the house and the garden. But I still have atleast one day a week in bed, and flare ups always take adjustments. I hope this might give you some ideas, or atleast the belief that you are not alone out there. You are being the best mum you can right now, it may not be what you expected but its what we have. Good luck.

Poor you! Have you tried accessing a pain management clinic? Ask your GP for a referral to your nearest one.

no i can’t imagine how much you are battling to get through it! must be so hard to be tired alot. It is a shame that you have to deal with this. Hopefully some solution will be provided to you soon!

Sounds terrible! I suffer from good old garden variety arthritis and that makes life hard enough

I definitely try to… Some days though its hard to move at all. Its difficult. With those days I mostly set myself up on the couch and get a few good movies set for the kids… bad I know =( Some days I don’t listen to my body like such as yesterday, and I sit down and just crash…

I wish you both all the best. Don’t ask too much to your body. Try to listen to it. If it’s tired and it needs rest, you should find the way to do it. I know, with small kids is difficult, but very important.

haha yes, I think you have commented on a couple of my posts =) Thought that may have been the case, but all good =) Unfortunately it’s not as simple as getting rid of something. This will apparently be with me all my life, and will only get worse.

I’m not currently seeing a specialist, but I am working with my Doctor, who is doing a great job thus far, and has referred me on for Physio for more help.
AS and RA are actually very close from what I have heard… I don’t really have much support here where I am, due to only being here the last year and not really knowing too many people, but my partner does pick up most of the slack, but he gets tired and sometimes gets cranky with having to do things (which I do understand, he wants a break too). Just wish I could manage this fatigue much better, all I want to do is sleep, sleep, sleep and sleep!!

I am really feeling for you. Im in a similar situation. Ive got rheumatoid arthritis (along with other health issues) and chronic pain – as in some days it hurts to just breathe. I dont have any advice really as im struggling to manage my conditions and having young kids as well, but i can sympathise. Things that’ve helped me somewhat include medications (steroids during flares), heat packs, swimming although this is rare as taking the kids isnt easy, and acknowledging that I do have illnesses and some days just cant do everything. This is one thing it took me a long time to come to terms with. I’d compare myself to other mums and yes feel like a failure as I cant be as active and am chronically fatigued. But you are not a failure! Your kids just want their mum and you are the only mum they have.
Do you see a specialist?
Sorry im not much help, but please dont think you are a failure. I know how hard it is and what im finding most helpful right now is to remind myself that im doing my best, I didnt choose this and all I can do is get through each day. And getting through is enough!
On the practical side of things, do you have anyone that could help with housework, washing etc? That can be a huge help if you do. Easier said than done but try to get as much help and support as possible.

Absolutely right!
Yes, I had misread. 4 kids!! I understand completely why you needed a holiday (I just talked to you in the other post! )

I suffered of another autoimmune illness in the past (vasculitis) and after one year treatment with an anti-malaria (yes, weird!) the antibodies just disappeared.
Any chance of getting rid of the antibodies with your illness?

Thanks for your response =) It is very tiring, with all 4 kids… You must have misread, their ages are from 6 year – 1 year, but that’s ok!
That must be hard to deal with also!! And iron deficiency, I’ve been battling with that most of my life =/ Definitely adds more to the fatigue…

Sorry to hear that! I suffer of Hashimoto, autoimmune form of hypothyroidism, It gives me tiredness but no special pain. The medicines should be able to keep it under control but sometimes they don’t, in particular because I’m close to menopause, having problems of iron deficiency, and sometimes they just don’t want to give me a break.
You are so young! And with 2 small kids. I can imagine how tiring it is. Sorry I don’t have any special advise though.