So so tired...

[Miska]

I am on my 7th week of MTX and I am super exhausted. It is interfering with work and spending time with my kiddo. I am always napping or laying down. I take 6 pills a week with 2mg of folic acid. I also bumped down my pred from 20mg to 15mg. Is there anything I can do? I know naps and slow down, but has anyone done B12 injections or some kind of med to pep you up? I have not felt this tired since I had the granuloma tumor in my throat.

[Dirty Don]

I am on same dose of mtx w/folic, am off pred nearing 3 years. Mtx takes around 5-6 weeks for most, some have gone to 3 months, but there is the chance it isn't working for you to be considered. When I dropped pred too fast, the lethargy increased. Also, when I had a couple of viral infections the lethargy was evident. Rather than B12 or the like, I'd consider the pred dose either too low or lowering too fast, imo. Best to you.

[Miska]

I have been on the pred 20mg for several months and just went to 15mg this past week. Does your body get used to the lower dose? Besides the extreme fatigue, I have also lost my appetite. Which is a shock to me being on the pred I have gained 25 lbs. I see my Rheumy in 2 weeks.

[Alysia]

being tired can also be part of being a weggie
over the years I am becoming more and more tired. I have no choice but to change my way of life to a more "easy" one, as much as I can.

[Dirty Don]

A 5 mg drop in one week can do that to one. Body can adjust, you need to wait and see I guess. Good that you're getting into rheumy soon.

[LisaT]

being tired can also be part of being a weggie
over the years I am becoming more and more tired. I have no choice but to change my way of life to a more "easy" one, as much as I can.

Me too. But it's hard to make things easier and raise kids and try to feed them any semblance of decent food at the same time. I'm always exhausted. When they fight, I feel as though I can't do it. I have a babysitter pick them up from school once a week or so so I can rest. I think I need someone more regularly. They're fighting right now and it's 7:20 am (pro D day off school). Argh! I think my ten-year old is old enough to be told that this stress is not good for me.

[Dirty Don]

Yes, your kids need to know...while they may not understand much, they need to know mom is tired and sick, not just mad at them for being little rugrats! Kids will respond to what they are taught...start teaching them...

[windchime]

Me too. But it's hard to make things easier and raise kids and try to feed them any semblance of decent food at the same time. I'm always exhausted. When they fight, I feel as though I can't do it. I have a babysitter pick them up from school once a week or so so I can rest. I think I need someone more regularly. They're fighting right now and it's 7:20 am (pro D day off school). Argh! I think my ten-year old is old enough to be told that this stress is not good for me.

It's not easy raising kids, while sick. I look after my 4 grandkids after school and on some weekends when mom and dad work. Plus they live with me. They are 9,9,12,& 13. A blended family. The two older ones aren't usually a problem. It's the younger ones that are higher maintenance, but they all understand that Grama is sick and they help where they can.

I find they are usually eager to help depending on what we are doing. They like to help cook for example. I can get them all to clean house on Saturday and it takes them about a hour. They don't do as good a job as me, but they get it done. Get them involved. Do you have after school care there? That's where they stay after school and they provide child care for a fee of course. It's usually reasonable. Of course school is almost out so what about the YMCA? They have summer programs for kids. They get to have fun and you get peace and quiet. Just a few thoughts hope some of it helps.

[godgirl]

Fatigue is one of the only side effects from the mtx that I've had. However, I've found that it does get better. I started with 6 mtx pills and 1 folic acid. I'm up to 8 mtx (20mg) and 2 of folic acid now. When they bumped me up, the fatigue came back, but it's getting better. I agree with everyone here, too. I think you've gone down too much on the pred. I've been tapering by 2.5mg every two weeks to a month from 20. (today I'm at 12.5mg) Talk to your rheumy about going a bit slower.

[LisaT]

It's not easy raising kids, while sick. I look after my 4 grandkids after school and on some weekends when mom and dad work. Plus they live with me. They are 9,9,12,& 13. A blended family. The two older ones aren't usually a problem. It's the younger ones that are higher maintenance, but they all understand that Grama is sick and they help where they can.

I find they are usually eager to help depending on what we are doing. They like to help cook for example. I can get them all to clean house on Saturday and it takes them about a hour. They don't do as good a job as me, but they get it done. Get them involved. Do you have after school care there? That's where they stay after school and they provide child care for a fee of course. It's usually reasonable. Of course school is almost out so what about the YMCA? They have summer programs for kids. They get to have fun and you get peace and quiet. Just a few thoughts hope some of it helps.

My kids are now used to my needing naps, and doing more of their active stuff with dad and things like artwork, reading etc. with me. Getting them to help around the house more is something we definitely need to work on. We didn't start young enough, partly because I've never had the energy to do the deep cleaning myself and have always hired a cleaner, so they started getting the attitude of, "Shamim can do it", and we've told them no, she comes to do the heavy cleaning that I can't, not to pick up your toys after you etc. we pay for her time and you have to tidy up so it can be used for cleaning, etc. I'm now telling Sophie that when I was her age I was ironing my dad's work shirts, cleaning bathrooms, tidying the kitchen and unloading and reloading dishwasher. I don't think she believes me! Now I need to teach her to do some of these things herself.

I usually have a babysitter help out once or twice a week and I realize now that that's backwards. I need someone to do the chores i don't have spoons for once or twice a week so I can spend the spoons / time /energy with the kids or resting when I need to. This makes a lot more sense than me wasting my limited energy on the dishes and meals while someone else plays with my kids. Unless they're being bratty and I need a break from their shenanigans.

Your suggestions about camp etc. are all good ones. My daughter actually goes to overnight camp for part of the summer and loves it. My son needs to be run every day like a horse and I can't keep up with him, so he will do one form or another of sports camp whichever weeks my husband doesn't take off work. When he takes holidays they will do stuff together with me joining them for whatever portions of activities I can. I've learned that planning for the summer is really important. Yesterday reminded me that so is planning for pro D days. It's great if I'm having a good day. If I'm low energy, as is more often than not the case, it's a very long day if I haven't planned for some help (I can usually manage an activity with them then nap while my sitter takes over, but I wasn't able to get her yesterday. I fell fast asleep during Bowen therapy later (hard to explain but it's a physical therapy that stimulates your body/nervous system to reset/realign itself... Helps with many things/everything.)

I've recently been approved for Canada Pension Plan Disability benefits; it's not a lot but definitely helps, and I feel less guilty spending money on a bit more help and camp when I need it now. I don't know how single parents do it or how sick parents do it if they're not able to do it. I guess having family on town helps but my family is spread out, nobody here....