Just tired of this

General
1

I am having a really hard time. I was doing so well for months. I had no pain, swelling or any problems for several months. Two months ago I was able to stop prednisone, and last month my Rhu started decreasing my methotrexate.

Then I got a cold. A stupid, everyday cold that most people would consider a minor annoyance at worst, but it got worse for me and was not getting better. I stopped exercising because every time my body got moving, I'd have a coughing attack that would get so bad I would get sick to my stomach. I went to the Doctor, found out I have asthma now, and had a nasty case of bronchitis. I had to take antibiotics.

These are all seriously NORMAL things for a person to do when they get sick, and this is what kills me. Because of the antibiotics, I had to get off the MTX for a week until the 10 days on antibiotics was up.

I did not flare up right away. In fact, I thought I was going to get through this with no increase in PsA symptoms and I was getting seriously excited that maybe I was in remission and maybe I did not need to take all these medicines anymore. Imagine a life without steroids, chemotherapy and biologic injections!

No, I was wrong. It just took awhile for my symptoms to flare up (about 2 weeks after my missed dose of MTX). I'm in bad shape, and haven't been this bad in maybe 10 months. I am back on prednisone and for the first time ever, it isn't helping. The pain is ridiculous, my hands feel like they are sitting in a fire pit, and so many other joints are involved. It just has hit me all at once, and when I'm not used to the pain and it all comes back overnight it sucks.

My husband is getting frustrated because I am frustrated about the fact that I have to rest right now and the daily house stuff isn't getting done like it should. I feel like I'm not taking care of things and I feel so helpless with this stupid disease.

IDK, sorry I'm venting. I'm just really really in a sh!tty place right now and could use a little encouragement cause I'm having trouble pulling myself outta this mental funk.
~Angie~

2

Just tell your husband (and yourself), that a clean house is the sign a of boring woman. When you get through this prepare for the next one..... Everytime you cook, cook extra and freeze so all you have to do is warm and serve. De-clutter de-junk and simlplify. Have a rummage sale with all the stuff and buy a lightweight vacuum and start a "Maids Fund" There is prolly a teenager in the neighborhood that would LOVE to help out for a few bucks..... It WILL pass

BTW my wife just went through the cold bronchitis laid out on her back thing and she DOESN'T have PsA

3

KISS- keep it simple silly...a philosophy that can apply to most things in our lives.

4

call a cleaning crew!

5

Keep your chin up, sweety. You have all the support and empathy here. laughter is the best medicine, so if you can watch a funny movie, or read a funny book it may help you and maybe your hubby too. I have the guilt thing too when the house stuff falls behind. Welcome to the guilty club. No one forces us to join, we do it voluntarily. I don't know what to do about your hubby and his feelings. I can tell you that you don't have to take them on. Let him keep them, as they make you worse off. Hope you can rest this weekend.

6

You will ride it and come out of the other side…you always do. Its just cruel to be without pain then thrown back into it. Give yourself a break a bit of dust and clutter never killed anyone…I employ my 19 year old son to do my housework when I can’t ( yes I know! ) He has ADD and can’t remember what to do when ( he has been know to ‘zone out’ vacuum clener in hand) and is out of work so it suits us both, I just close my eyes to where he hasn’t cleaned until I am up to doing it and it makes him feel he’s contributing :slight_smile: Hang in ther Angie x

7

Thanks friends. :o) I am feeling much much better today. Tnt, awesome advice about keeping stuff on hand for "when" this happens again. Something about that statement made me realize that I was in a bit of denial about the reality of things with my PsA. I guess I had this idea that it could all just go away and when it did for a bit and then came back I got really bummed out. I think the key is to be prepared domestically "just in case" which makes it easier on my psyche when I have bad weeks. I think I also need to get some voice recognition software because I'm full time in college, its all online, and it can be really hard on my hands.

Thank u again everybody.

8

Hugs! I'm glad you're feeling better today. It really hits hard when you seem to be on an upswing and then things go downhill fast. PsA is never predictable!

9

Angie...I ended up in a similar position during my uni finals last year... I feel your pain. But you know, your health is more important than housework, so delegate for now and brag that you can do better, and WILL, when you come out the other side of this.

Frustration goes hand in hand with PsA, in my case anyway, but it's how you deal with it that counts, venting on here with kindred spirits is the way to go and gets rid of some frustration (hopefully), you know I banged a table in frustration years ago, I broke bones in my hand, and my doctor (specialist) said 'frustration can lead to venting, but the difference is when I bang on a table with frustration, the table breaks, with you it's the other way round', this still makes me laugh but also showed me that he understood how frustration adds to the illness.

For now I shall wish you a speedy recovery from this flare up and a large dollop of pain reduction on top

take care my friend

10

I can relate. I am new to this disease but I am trying to get over the guilt of not being able to the mom to my 10 year old daughter like I was to my two sons. My cooking has simplified, my house is more cluttered andI try to take naps so I can have the energy for her when she comes homes. I am going to help coach her basketball team by sitting in a chair and allowing other to run the drills. It is hard for me to know that I am no longer the super mom that I once was. I am just a mom now who wants to built memories.



mimiB said:

Angie, I am so sorry ! I think most of us can relate. I really like lamb's idea of starting a maid fund and decluttering ! I think it would be cool to have a "PsA Survivor" thread on here with tips on how to make life as good as possible with this horrible disease. Also, I wish I could just wave a magic wand and absolve everyone of their "guilt" ! I have decided to save mine for something worthwhile. I have decided that I will not feel guilty over something with which I have absolutely NO control.

I am a Mom of four adult kids, a wife and a grandmother who has always loved nurturing and caring for my family. I love cooking for them, hosting family gatherings for holidays, birthdays or "just because". I have learned that is is less important for the cake or meal to be made by me than it is for us all just to be together. So sometimes I just have to ask everyone to bring a dish or I have to buy a cake ( gasp!) instead of making it, and even serving it on paper plates. But these minor adjustments allow me to relax and enjoy the most important thing, and that is the joy of being together.

AS the holidays approach, I encourage all you to think of ways that you can give yourselves a break from the stress and "guilt" of not being able to do what you used to do. Can anyone relate ?

11

I am so with you. Have had a few months of pain free and normalness. Then! Suddenly a tiny thing knocks me off course, another flare up, more fatigue, more steroids. I AM SO FED UP OF THIS!

On the plus side, I have a cleaner.

12

I love the idea of a maid fund. I am going to start one today. I know a lady who cleans and I am also going to ask her if I can keep her "on call". If she won't maybe she can tell me someone who will:-)

13

Hang in there. I feel more "normal" knowing there are others out there that are going through similar situations just trying to do daily things, like cleaning the house, or in my case getting up and having a shower without the tears and frustration.

It is miserable having PsA hanging in every background thought during the day, and doing hundreds of small things to avoid painful situations.

I have to keep reminding myself to stay on the positive track and not let any of this get me down, as we all know it can send you into a big sooky spiral.

I stick to a daily routine to get through making beds, doing washing and cooking/ cleaning. It keeps me focussed and helps me push through when it's tough. It's easier to stay on top of it all if you can. But it is so important to factor your rest into it too. Hang in there and know that we are all here to support you through.

14

My sayings are, "I am tired of being tired, and sick of being sick!" Always have disposables, and buy prepared food when I cannot cook. If anyone complaints about the house when I do not feel well, I always ask if they are asking to help by their comment. Now they do not ask, but help out as they walk in. After a while, family and friends get the picture.

Funny...today my uncle came to visit from out of State and heard me asking about paper plates. My uncle asked puzzled, while another family member replied, "She doesn't do dishes when her hands hurt".

15

I can relate. My house is a mess right now. I live alone so no one is here to complain. But I am sick of it.

16

I know. My house has 2 bathrooms. The one for the visitors I put a sign, "Self Cleaning Bathroom, You use it, you clean it." I live alone also, have a lot of company coming in, but I refuse having to clean after people who enjoy good health and say they love me while making me work harder. Thank God I haven't lost a friend because of it. They are understanding and are always coming to help.