Hello and sorry for the long vent

This has been such a long and stressful time. My husband has been working two full time jobs, one paid and one that was unpaid for school. I’ve had a time trying to keep up with all the bills, keep up with the housework and raise our 4 year old pretty much alone. We have been at this since before our child was born. Of course my PsA flaired in the mist of all of this, because keeping up with this extreme pace wasn’t hard enough.

I feel like a old women living a young womens life, except my years do not match my declining health. I feel robbed and angry that my body struggles to keep up with the demands of my life.

That my hands hurt too much to tickle my son when he wants to play. That I worry about what effect having a sick mother will have on him. It’s no longer just about what I am missing out on, but what he is.

I’m selfishly bitter about being an artist who’s hands cannot create like they once did.

I’m angry there’s no cure, I’m angry the treatments have scary side effects. And I mad no one in my peer group can relate to me at all.

I find it ridiculous they really don’t know what causes this and that there are millions of so called “cures” involving restrictive diets and other stuff that I just can’t afford to stick to that make me feel like this is somehow my fault.

I’m mad I’ve spent in medical bills enough to take my child to Disney world 6 times this year already. I feel guilty all that hard earned money was spent on me and not him.

He wants to go see Mickey so bad and I always swore my children would have that kind of experience, but this illness demands too much, I can’t afford it.

It’s breaking me that when I talk about my physical pain and frustrations people shut me down, tune me out, ignore and change the topic, not because they don’t care but because it makes them feel as helpless as I do every day of my life.

How can I provide what my husband and child need when there are days I can’t even get my shirt on by myself.

Sometimes I really debate if the burden of my presence is worth the little I feel like I can offer them.

This all needs to be said, I can’t live alone with it anymore.

It’s actually a good day for me, and my husband is graduating, it’s over we have reached a new path and our heavy burden will now hopefully peel away layer by layer.

I have dreams of going to college myself, but I’m scared, what if my body worsens to the point I can’t maintain a job, will the stress of a 9-5 put the final weight that snaps me? Should I invest so much work and money in a body I can’t trust to function?

Struggling to do the mundane like a weak ancient women makes me wonder and doubt just how much I’m worth.

Sometimes I feel like if I’m being honest and realistic I’m just to much of a risky investment.

I’m sorry this is my first post, and I’m sorry it’s dark and angry, but that is what I need today, a place to say all the things I hide from the people I love.

I’m going to keep fighting for the postive, and keep hope in my heart, but today I need to voice how it hurts because my pretending all is well isn’t always okay.

You are right to vent to us here, as we understand how hard normal life can be anyway with a little one, let alone with PsA added to the mix.
I’m so sorry you feel so bad and hope that things do start looking up soon.
Do be gentle to yourself…this is not your fault! It stinks, its unfair but it isn’t anything you have or haven’t done that’s caused it.
Many people on here can tell you how their children are raised to be caring wonderful adults, who have had the benefit of having a mum or dad be at home with them to talk, cuddle, swap stories, make messy play, and all sort of wonderful adventures of which “Micky” would be jealous. Nothing is more important to a child than having loving mum there with them every step of the way x

Thank you for the quick response, it was a bit draining putting all of that into words so it took me a moment to recover before I could respond to you.

It was scary opening up and exposing those thoughts. Sorta scared someone would fuss at me for being negative and not sucking it up.

It was a relief to have a understanding and postive comment pop up so fast. :slight_smile: Thank you.

You’re welcome Lena, but don’t ever worry about replying to anything straight away, we all have times when we can’t write or reply because, as you say, opening up is completely draining. I will let you in to a secret…I had counselling in 2008 after holding in emotional issues from childhood (I’m now 51!) I’d held them in as a survival reaction. My counsellor warned me before my first session not to have anything planned for the rest of the day as I would be emotionally drained, she was so right! There are all sorts of people on here who all react differently, but I’ve never known anyone be told to suck it up when they have released long pent up grief, frustration and anger. We do that to ourselves instead lol.

Hi Lena! I am so glad you found our "safe haven"! I found this site several months ago and the people here have been so informative, loving, supportive and non-judgemental.....I would be lost without them! I'm sorry you are going through all this....please know you are not alone and don't ever feel you have to apologize for a post!

Keep up the good fight! :)

Hi Lena,

Being sick with a little one for 4 years and a husband who is not around (no matter how good the reason) would be physically and emotionally draining for anyone. The truth is that you can have it all, just not all at one time probably. Hopefully your husband is at a better place career wise and will be able to spell you out more. I can vividly remember the exhaustion of those years when kids are little, and also the feeling that I had to do everything NOW. Getting your degree is something that you can do at many different points in your life. It is easy to forget that the stuff we own and the degree in a frame on the wall is not who we are. Your husband has achieved a real accomplishment but you are not less than him because you are waiting to get your education. Your work has been really important, and I don't mean that as a platitude. I am at a different point in my life than you, and I do have some paper on the wall, but my greatest accomplishment is raising happy children while I was sick with almost no money.

Your son has had the gift of your attention growing up. That is a gift and more important than a trip to Disney. If you take him when he is older he will actually remember it! Don't be so hard on yourself. Take care of yourself, it really is OK and you deserve it.

getting it out is the whole point. keeping all this bottle up inside helps no one and with our disease it could actually contribute to making things worse. You've gotten good advice that doesn't need adding to. Just know we're all here to listen and support and please try to remember that with medical intervention and the right combination of drugs it will get better.

Lena, I am so very sorry you are mad and sad and frustrated and hurting. This site has been a blessing for so many, and I'm really glad you found us. Please, don't ever apologize for how you feel. You have the absolute right to feel the way you do. The purpose of this place is to be free to express yourself - wherever and however you are. We will not judge you. I know I have been in a pretty dark place some days, and having a safe place to vent has helped me come to terms with my own limitations. I hope we can do the same for you. What you typed tonight really resonated with me. I just had to send you a zen hug, and to let you know that I am sending warm, fuzzy thoughts your way. You are welcome to message me any time and I will do my best to listen and empathize. Maybe the two of us can get to a better place together.