I would love to hear from and talk with moms currently doing the Mom thing or have done and have good insight on caring for your children while struggling with PsA. (Hearing from dads on the job is good too!)
My kids are 10,4 &1. I homeschool them. They are involved in a ton of activities. I am constantly on the go with them while fighting extreme fatigue, stiffness and pain. Recently I’ve had some relief with prednisone (which has taken the pain but caused a few other issues lol) but I know this is temporary. Starting methotrexate soon.
I keep doing what I’ve always done as if nothing has changed but then days will hit me like today by 4 pm I was broken down with migraine, nausea and just an exhausted mess because I way overdid it. And what Mom gets to stop at that time of day?! It’s time to prepare dinner and feed them and baths and bedtime routine.
“Ain’t nobody got time for this”
My kids are sixteen and eleven, but my little one was just under a year when I was diagnosed. Thank goodness for naps- one nap on the couch early, long nap with him, then another nap or rest when my husband got home. Did I mention how bad the fatigue was? And he napped until he was almost five! Ultimately, every med put me in a better position at least temporarily. I stopped working full time when my first born was an infant, and have worked jobs since with either flexible schedules or schedules of my own making.
After being on my third DMARD I had Enbrel added in. That helped even more. So getting past the gap was the most important, as was my kids getting a bit older, making my own schedule, and napping. It’s not perfect but I’m reasonably functional.
@Stoney My first two were amazing nappers. Child #2 decide at 3.5 she was completely done with naps. Which was a very sad day.
My 1 year old takes 2- 45 ish min naps a day give or take usually one of the naps is less.
During that nap time I always rush around trying to do dishes, cook dinnner, Read to the other kids make phone calls etc. I never seem to feel like I can take that time to rest. He is my wild #3 baby and I can’t seem to get any housework done while he is awake he just undoes it all!
Definitely don’t want to rush away these adorable years but oh can I imagine that part will be so much easier when he is older…
So it sounds like the meds did help your fatigue a bit?
Plaquenil helped some. I was on that until I started a biologic. When I started leflunomide that made a bigger difference. Fatigue is still an issue and I do nap most days. But I can also have the occasional crazy busy day without napping.
My first child was not a sleeper at all. I’m not sure how I would have survived I’d my second child was not such a good napped. And she was in school by the time that I started having problems, so I only had one child full time to deal with. Home schooling adds a different stress.
That, stop that right there! I can understand it, heck I did it too, but in my experience it is not the best way through. Nowadays they tell healthy moms to nap (or at least rest) when their kids do - that goes double for us.
Even just subtle changes can make a big difference - for example, in my most recent flare, my neck was the thing bothering me, so it would make a big difference if I could lie down with a straight spine for 20 mins.
So, if I was in your situation, I might try snuggling with a book in bed with the other two during nap time - but with the 10 year old reading so I can just lie flat out…
My daughter is now 8. Things were very hard when I had first onset and she was two. Practical options (if your upper body and shoulders are involved) include sitting on a low couch or cushions so the little ones can crawl in your lap (I went through a hard period where I really couldn’t pick her up except in an emergency - not fun), and getting as much help from your eldest as you can.
My little girl really can look after herself for half an hour now while I flake out at 5.30 pm - she knows the rules and understands why I need the time, you might be able to wangle something to at least get 10 minutes lying on the couch if you enlist your eldest. And maybe a little more housework too? Though I know a crazy 1yo will turn it into a cyclone in a minute, sigh, I had to sometimes learn to leave it that way.
And usually, when you find the med that works for you, it really does help with the fatigue, but I did learn the hard way, that is not an invitation to continue a burn-out lifestyle without further consequences
@Jen75
Thankfully my 10 year old is incredibly helpful. I had to go for bloodwork yesterday with all of them and he even wore the baby in the Tula carrier. It was the cutest thing. He helps with housework and runs upstairs and gets baby when he wakes from his naps and helps get him in and out of the car. Idk what I would do without him. But I’m super careful to not overuse his help and very aware if he is feeling burnt out on helping for the day. He loves his siblings and I don’t want him to ever feel any resentment towards helping me or them.
I have been diagnosed with OCD so its really hard for me to not clean up. I know how badly I just need to let things go sometimes so I can rest though.
I’m almost starting to look forward to starting a medication as I’ve only been on prednisone so far in hopes I’ll get lucky and it will be the right one and I can feel so much better!
How lucky you were to have the good sleeper at the right time!!
Homeschool is such a passion of mine. The kids respond to it very well and we really all love it. It’s part of our lifestyle. If it weren’t such a big part I would definitely be putting them in school just so I can focus on caring for myself a bit. It would really disrupt our lives to change that now.
So I’ve just got to figure out how I can do it all.
Sounds like you have a full plate! I’m a Mum too with a 7 and 3 year old. My recent diagnosis and aggressive form of the PSAhas left me feeling completely down and physically destroyed.I feel so rotten on the medication and it gets me down that I may have to give up my job that I love and the guilt! The guilt I feel because some days I just can’t Mum!
I’ve just joined this page and I’m so far finding it so encouraging to read others stories and I feel less alone.
Jayne
Thank you so much for sharing with me and welcome to the group! I’m sorry you’re struggling with this. Some days it is very hard to Mom like I need and want to so I totally understand where you’re at with that!
Just want to say I think you must be amazing to do all that you do, however hard it is. I’m recently diagnosed taking prednisolone awaiting starting a DMARD so at about your stage. My children are now grown up but I was just the type of mum just like you sound. I loved the children but they are hard work when you are well let alone suffering like you are. If you are feeling like me I just don’t know how you cope, I struggle to care for one grandchild one day a week at the moment. Wishing you all the best, hoping they get your disease under control pretty quickly, I’m sure those lovely cuddles children give you go a long way to bringing a big smile to your face when you are feeling done in.
All the best Anne
@AnneJ Thank you for your kind understanding words. It helps sometimes to know someone understands what we are going through because although I have a family support system they really don’t understand.
How is prednisone helping you?
It was a miracle for me after 24 hours. When that round ended though and he started me on another it’s been helpful but not quite the same. Starting methotrexate tonight!
Hi Mwitt,
Oh I certainly do understand, as I say you sound an incredible lady battling on, not that good mums have much choice, good mums put everyone else first despite how drained and empty you can be feeling.
You asked about the prednisolone, I started on a high dose about 8 weeks ago now and it was amazing within 48 hours I felt so free, free of pain and stiffness, some of which I didn’t realise had crept up on me! I could suddenly move around almost effortlessly again and sit or lie comfortably for more than 5 mins something I havnt been able to do for 18 months to 2 years. I am normally an active person (and only in my 50’s)but have struggled to be of late, we keep a few cows, sheep, hens, bees have a big veggie garden etc on our smallholding by the sea for enjoyment having taken early retirement. As I have been weaning myself off the steroids by reducing the dose the aches, pains, stiffness and accompanying difficulty getting about is gradually increasing again and returning. I did start on sulfasalazine but an acute reaction meant I had to stop it and cannot start another DMARD until I have had my jaw joints replacements this week. Because the symptoms were all returning my rheumy did say increase the steroids back up a little which I have done but the response has not been as great and it was still not the higher dose I started on.
I do hope the methotrexate kicks in soon for you, I guess that is what they will try me on next.
Keep strong, we are here all in this together and it is a comfort to know there are other people around who understand that extreme fatigue and the frustration of looking well but feeling dreadful.
Someone I know not to well but saw the other day said to me “oh how are you I heard you have not been very well” I replied “no unfortunately I have not felt great” so she then said “well you certainly look well most people who are unwell look drawn and haggard but you look the picture of health” I don’t want sympathy as such but the way she said it made me feel she thought there was nothing wrong and it was all a fuss I was making. I struggle on and don’t tell people I’m not well usually, not many people know, as like you I expect you hide it well. I just replied, it’s the steroids I take they make me look like I’m blooming and left her to it. It’s times like that though you feel like crying because all you want is to feel well again and to do just what you have always been able to. Anyway Mwitt, I have rambled on about myself but it’s just because I can empathise with how you must be feeling having had children and knowing how much of your energy they use up and I was well, but to care for children with PsA Knowing know how rough it can make you feel must be totally exhausting.
Look after yourself you are precious to your precious family. Warm wishes Anne, p.s I think I may start a thread about people’s lack of understanding about how exhausting all this is!
I think that would be a great thread!
You are sooo sweet!
That’s awesome you were able to retire and have a little farm and garden a dream of some some day!
I’m glad prednisone helped you too! And that’s too bad you had a reaction to your other medication.
You’re having jaw replacement surgery??! Is that because of PsA?
My symptoms all started about 2 years ago too so we are just about in the same boat.
I can perfectly relate to the comments about how well you look. While I’m glad I appear well it does make it so much harder for anyone to understand the depth of the pain and the fear of the unknown future of this disease.
Im 10 hours in on methotrexate and sooo happy to see no serious side effects just yet.
Hi @Mwitt, I’m wondering and hoping the MTX is with little or no SEs so far and maybe even starting to make a difference in your pain level.
I wanted to say, too, I don’t know how you handle all the day-to-day work of raising three kids and on top of all that, homeschooling! I hope the MTX treatment gives you relief and eventually possibly a biologic to stop the PsA in its tracks!
When I read the comments from young people I first think of how difficult it must be managing the busy life of a young parent or student plus knowing you have a lifelong disease! Ugh Thank God there are meds to reduce or eliminate the symptoms, but unfortunately it usually takes going through the “gap” to get to that point.
Next, I worry about my 4 children and 10 grandchildren. Our kids, especially our 3 daughters, have had lots of trouble with unusual aches and pains off and on. When two of them were around the age of 10, they had knee pain so bad I had the doctor check it out…supposedly it was growing pains. I didn’t have any growing pains that I can remember…I never had joint pain until my back problems in my 30s. They also have some skin spots that sure look like psoriasis.
As an older person—64–I’ve slowed down so much lately that I wouldn’t/couldn’t be much help to them if they ever became disabled.
I know the strength usually comes from somewhere when it’s needed, but I’m crossing my fingers that if they are to get PsA it waits to rear its ugliness for a couple more decades!
Being on Zoloft has curbed my worrying somewhat—
@Grandma_J
Hey so sorry for my very delayed response. Thank you so very much for checking on me.
I’ve taken my 3 dose. So far only a little nausea and tiredness. Nothing too bad!!
Been taking it Saturday nights. My last dose was 15 mg. Only things I’ve noticed is last night and today I’ve had a lot of confusion. It’s a weird feeling. Have you heard of this?
I hope your kids don’t get this!
It’s definitely challenge with the kids and homeschool.
Hi Mwitt, so pleased to hear you have minimal side effects from the MTX let’s hope it kicks in and helps your PsA symptoms very soon. I am about to start MTX so your post is a positive one for me. Experienced friends will be along soon to help I’m sure with your question re the confusion but I’m sure I have read it can cause a sort of brain fog for a day or so when you initially start to take it but it will likely wear off over the next few weeks.
Thank God there are meds to reduce or eliminate the symptoms, but unfortunately it usually takes going through the “gap” to get to that point.