Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnosis and family response...GRRRRRRR

Thank you for understanding the feelings I am having. I felt somewhat morbid saying I would rather live a full life with less pain even if it winds up being shorter.

What sucks is after finally sort of figuring out what is going on I thought the people in my life would actually be supportive, but I guess I was being to optimistic there.

I have not started any medicine yet and am having major pain and my significant other is "annoyed" that I can't just suck it up and that right now I am having more bad days then good. He even has his mother calling me to lecture me about it. To be honest all I want to say to the both is go screw yourself and when you deal with what I do then lets have a conversation. I wind up spending more time in my room because laying flat is the only way I can get some sort of relief. Of course that takes me out of the family unit because I am not there, naturally they believe that is me doing it on purpose and so I am just a fat, lazy, useless bum. I even suggested getting a recliner to have down stars in the main living area so that I can have a more comfortable spot to be with family without having wretched pain. I thought that was a good idea, but the response I got was....we will see.

Look figure out what the hell you want or leave me alone. Right now all I want is for anyone who doesn't get it, doesn't try to get, or doesn't care to get, to the the hell out of my life I don't have the time or energy to deal with anyone else's crap anymore. My significant other actually got angry me because I couldn't lift a 4 gallon thing to water the plants in the house. Really, I can barely carry a purse right now but you think I can lift 4 gallons like it is nothing. GET REAL.

Ok, as you can tell I am really heated at the moment. I don't have a lot of energy to do a lot anymore so I conserve my energy to try and do things that make me happy. Apparently it is my duty and obligation to be my families biatch and do what they want when they want it and to hell with what the repercussions may have on me. GRRRRRRRRRR I AM SO BEYOND ANGRY RIGHT NOW!!!!!!!!!!!!!!!!!!!!!!!!!

Cubsgirl - He could also be pretty frightened inside of himself? Unsure how to deal with? Doing the 'bloke' thing? OK. Rotten. Suggest you get hold of your rheumatologist and pull her in, get a consultation going and haul him along. Also, might get him here on this website. There is a 'family support' forum on KA.

Know others will be piling in to help. Best of luck in sorting - very diff.

Big (((HUGS))) to you - courage.

Molly C (France)

Mollyc1I,
I have tried all of those things and yet he still is unwilling. I was able to get him to attend one counseling session and that was via Skype, because that didn't work due to technical issues the counselor wants us to come in to her office and now he won't do it. It pisses me off. It is like as soon as things get hard people say oh good luck with that can't wait until you are not burden anymore and then maybe I can deal with you. I am just at the point that people can go screw themselves when it comes to not understanding, caring, and narcissistic.

I am not in a good mood today and even said to him sorry I am not in the best of mood not trying to take it out on you. His response was it is fine I am counting the seconds until you go with your mom for the next few days so I don't have to deal with your drama anymore. REALLY!!!!! Thanks I feel the love.

You are so not on your own with this one. Too many of us have experienced something akin to this.

There is a wonderful article that some have found helpful. Here's a link to it: The Spoon Theory

It is a beautiful illustration of what it's like to live with a chronic illness.

Molly also raises some good points with regard to your boyfriend. It is possible that his anger when you couldn't lift the water jug was based in his fear, for you, for your future.

Problem is that it's extremely difficult for someone who doesn't live with the pain and energy drain that we do to understand what it's like. People seem to think that it's 'only pain', and expect that we can just suck it in and tough it out. You and I know that this isn't the case, but unless you live with it, it's almost impossible to understand. It might be that accompanying you to a rheumy visit will help him understand better, in that he'll hear for himself, from an expert, how debilitating living with a Spondy is.

As for his mother, if you were feeling gracious you might be able to say she was trying to help???? But I know it didn't feel like that to you. Maybe you could get together for coffee with her, when you've calmed down and can talk a little less emotionally, and explain to her what the realities are. Also, give her a copy of The Spoon Theory and invite her (and your boyfriend) to come here and read about people just like you.

In the meantime, remember there are tons of hugs coming your way. You have a plan to deal with this (Enbrel) and hopefully, it will enable you to live the life you want to lead.

Hugs,

Inanna,
Thank you for your kind words I defiantly will look at the article you suggested. His mom though maybe it comes from a good place does not feel that way when I am getting yelled at for being a lazy slob giving in to pain. I thought she would get it because she has chronic pain as well, but when she complains about it the world stops and no one has as much pain as her. The reality is I understand where she is coming from but it is so hurtful to have my boyfriend tell her to call me to yell at me and tell me that I am a loser.

I don't think they understand the emotional side that goes along with this. Thank goodness I have my mom who has MS and understands the process. I have all these feelings going through my head like what if the enbrel doesn't work or any of these type of meds work to live in this level of pain is not worth it. To be honest I am really freaked out and scared of the unknown right now and I was hoping the person who is supposed to be my partner and best friend would be there for me not hold it against me as a weapon. That is really what it feels like. Sometimes I go to my own room just to get away from the judgement from both him and his daughter. It is so hard and I am so scared, I am actually crying as I right this and they are in the room and ignoring it entirely. How I am supposed to feel or even open up to someone who doesn't care want to care or even want to learn about it. I can be scared for everyone it is hard enough for myself.

Hi Cubsgirlfan,

You sweet thing. There is nothing worst then being around those that are not supportive. It is abusive to not comfort someone who is hurting. Even a thoughtful word goes a long way. If he is too selfish to come along side you and make you feel love and wanted what are you doing with him? I was with too many men like that before and it is not worth it. I found a wonderful man who is pushing through his own fear's about me sliding down the slippery slope of disability and he is there for me. Mentally being tormented while you hurt is not productive to your well being. You have to think of yourself first.
I want to die everyday because my pain has taken me to level's of an insufficient life. I get up and make it through and only because I know I am loved and supported. You get some therapy for yourself and don't worry if he comes or not. You need some peace of mind. We are here to support each other because we understand. I love "The Spoon Therapy" and have handed it out many times but it only affect's those who truly love you and want to support you. God bless.

I sent "The Spoon Therapy" to him and his comment was, "I don't know why you are sending me this. I get it you have pain what does that have to do with this article. I asked if he read it and he claimed he is the king of skimming everything. I told him he needed to actually read it and understand it and maybe it would understand better where I am coming from. Believe it or not it started a fight because I told him I thought that this would help him better understand where I am at and he just said I don't know why you sent this to me it is dumb, I get it your in pain what does this story do to help. So, I told him just forget if you can't understand that then I don't know what else to do to make you understand. I am in therapy and have a great therapist and he went for one session and when she said she wanted us to come to the office versus doing it via Skype he found every reason in the book to not want to go. It makes me feel like I am nothing and I just make things worse for people.

What makes it so hard is I am an advocate against domestic violence and am very good at helping others and have help many others gain their sense of self back through their abusive situation. Yet, when it comes to me I feel like if I have to deal with it the least I can do is try to prevent others to experience the emotional abuse and pain that I have experienced it many times over in my life. It seems like illness sometimes can breed abuse and I don't understand why.

I want to be happy, I want to be supported emotionally, I want to be loved, I want to be healthy, I want to feel valued and not viewed as a hypochondriac that is just wasting their life.

I can't help it if there are sometimes all I can do is sleep all day especially when we have done something that has drained my energy, which intern increases my pain. I am do sick of being sick. I would do anything to be healthy or even near healthy. I am in the early stages of understanding and emotionally dealing with a chronic illness and starting the journey of dealing with disability paperwork and all that goes with it. I am sick of being sick and I am sick of being scared. I just hate it.

Thank you all for being so supportive if it wasn't for this board, my mom, and starting therapy I would be more lost then I already am.

Hey Cubby, Since you are a Cubs fan I'm going to assume you live in Chicago. If that is the case, it tells me a lot about the guy you are with, and I understand where he is. I'm from Chicago, and try as hard as I can, I've never been able to get this huge chip off of my shoulder. I think it's in the Chicago water. You are born there, and drink the water and sure enough, the chip on your shoulder starts growing and growing until all you can do is go around trying to get anyone to knock it off. Oh well, you know what I mean. Right or wrong, it's a tough town to live in, and even tougher to be hurt in. You can rest assured (all day if you need to) that you have folks here will stick with you no matter what. After all, I've been here for years and they still like me. At least I think they do. At least they don't kick me off the forum, and that's a start.

Give him a chance, and then if both you you can't do it, you will find someone who can and will. Good Luck, and Prayers....

Dean

Dean,
I actually live in southern California I am just a Cubs fan so I wish I could blame it on the water. My boyfriend is not from there either but I am intrigued by your idea and it made me smile which Idid need!!!

you are absolutely right! we all deserve this!

i truly don't know what i'd do without my husband. often, in pain, i feel lost in a sea with no one else who truly understands or cares, except for him, and that is enough.

i wish the same for you as well. we all deserve that our significant other will be there for us no matter how big the challenge, it does say "in sickness and in health".

huggs to you!
lean on your mom, your therapist, and us.
as for your boyfriend, i hope the best for the two of you, whatever that might be.