Well, it has finally happened. My energy reserves have run dry. It has been a really rough couple of months, and I am now having trouble mustering the energy to get out of bed most days. My PsA is progressing at an alarming rate, and I don't even have the energy to make the phone calls necessary to find out what is holding up my Remicade delivery. Today I got up, took my kiddo to school, came home and went back to sleep for 5 hours. Then I got up and tried to help my Mother-In-Law unpack some boxes (she has LEGIONS of them). We got one box unpacked, and I was so drained I laid in bed and stared at the T.V. for the rest of the day. I can't even tell you what I "watched" because it just didn't even compute. I've been trying to work up the energy to take a shower for the last 4 hours, but it hasn't happened yet.
I am just so frustrated...and I know my husband and son are really frustrated with me also. They don't say anything, but I can tell. My husband comes home after a 12 hour workday, and wants to eat and relax, then go to bed. Instead he is having to move stuff around and unpack boxes...and he is sick of it. My son comes home from school and wants to get his homework done, then play League of Legends for a bit, then go to bed. Instead he has to come home, cook dinner (or at least help cook dinner), take the trash out, do the laundry and dishes, then do his homework and go to bed. I feel terrible because I KNOW I should be doing this stuff...I'm not working and should be able to manage some basic housework. Just a few months ago I did ALL the housework including cooking, dishes, laundry, scrubbing toilets, vacuuming, etc. The whole point of my mother-in-law moving in was so that I could do that stuff for her because she wasn't getting any of it done at her house, and her apartment was disgusting. Now I find her checking on me far more often that I am checking on her. This is not what she signed up for either.
When is this going to get better? As soon as I start thinking that surely I am at my worst, things spiral downhill even further.
So sorry its all got so bad for you. I’ve tried to write several responses to you but my brain fog is bad and it wont come out right…Im thinking of you hang in there,I’m sure you will get some good responses here x
I have a standing order for pred whenever things get this bad, but I have to balance it with the side effects from the pred...it makes me crazy. Its like going through menopause all over again - AND gives me strange food cravings, makes me irritable beyond belief, and keeps me awake all night...none of which make living with me any easier :) My poor hubby and kid (and now mom-in-law). I have a few dexamethazone left (which has fewer side effects for me), so I might just call my rheumy and see if they can call me in enough to finish off what I have left.
Sybil: I'm a tea drinker too (can't stand coffee). Cream and sugar? Maybe we can have a long distance cuppa. :)
Jenny and Louise, thanks for "listening." I really hate being a whiny cry baby, but I'm having trouble being my sunny optimistic self right now.
I just take the prednisone; it effects me too, but it is better than feeling like your going to die. Whatever helps, I always say.
We built this house three years ago, keeping in mind that things were difficult for me to clean, etc., so it is all on one floor, no shower door, and lots of things with my heath in mind. Here we are, 3 years later, and I can't take care of it the way I would like, and am looking for someone to help me a few days a week. I never thought it would get so bad that I couldn't do simple things like mopping. My doctor offered to write me a note about it, funny, but it made me feel like a 6th grader again. My husband helps a lot, even with working a full time job and training all the time for marathons....I still manage to have dinner for him most every night, but that is getting to be a real chore, but I can still do that, so do it I do.
It will get some better, but my reality is that things will never go back to the way they were. Thank goodness for Enbrel and Humira and prednisone. I cannot imagine what it would be like if I didn't have anything. Hang in there, and I hope you get better.
First of all, I empathize SO MUCH!! The past few months have been like this for me. My kids are making dinner, (they already to their own laundry and take turns emptying the dishwasher, sweeping and vacuuming), my husband has to do a lot of misc. stuff, take care of the pets, grocery shopping, take kids to activities etc after a long day at work. I've been basically down in bed the whole time. Showering is a big deal right now and happens about every 3-4 days (when I was well I was an every other day type of person).
Yes, everyone in the house is frustrated, including me. But if I had some disease that was killing me they would have to do all that stuff AND deal with grief. So with that in mind, dealing with me 'just' in pain is really not so awful long term. My kids can still spend time with me in bed, I'm still hear to talk to my husband and listen to him talk about his day. I try and be cheerful, or at least not hysterical :P
Eventually your new medication will work (after 4 weeks on a new med, I'm finally have 2 or more days out of bed per week), and you will be up and if not as good as before, at least have the energy to get the house in order again.
Today is one of my new "good days". I was able to do some things around the house that my husband was putting off (changing litter boxes, etc), and ran a few errands. For the last 3 days I didn't get out of bed beyond moving to the sofa.
I've had PsA 32 years, and I know that this disease goes in cycles. At some point I'll be up doing things again. Then I'll be down in bed again, then back up. My family is pretty good about rolling with it, as it is all they have ever known. It's not easy though. Hang in there!