One Step Forward, Three Steps Back

I just cant seem to catch a break lately!! They say when it rains it pours, and I feel like I have been stuck in a rain forest! But I do have one positive thing, so i will start with that. In my last post I wrote about my Dr wanting me to use a walker. I was able to get the one that I found on craigslist, yay... lol It is a nice one, never been used outside and barely used at all. $35, got a great deal. I got it home Thursday night, and it sat for a couple days. The depression kicked in hardcore. The thought of having to use it was depressing.... and once I could physically "see" it, I lost it. I was angry,very angry... at me, at God, at the world. This morning, I had a few errands to run. My son usually goes with me, and helps me walk, but today he couldn't go. So I took the walker....OMG, it takes sooo much pressure off of my knees, and my whole body actually, it is unreal. When I got dizzy (which happens every time I walk, no matter how far the distance), I was able to sit right down! I didn't have to search for a bench, or a chair. Got a few funny looks, but hey, we are used to that, Nothing new. I was still worn out when I was done, but I had some energy left and actually was able to make it though the next stop also, before I had to take a break for awhile. That in itself is a improvement....yay, for the small steps! Hey, I can't run a marathon, but I saw something change for the better, and that hasn't happened in a long time. So, at first, I had nothing but anger towards this new "accessory" that I now need to depend on, but it not so bad. So I need to use a walker, its not permanent, its not a death sentence. I can do this.

As most things in my life, the saying, "you take one step forward, and three steps back" fits me completely. The walker situation was my one step forward....during the few days that the walker just "sat" in my room, the storm was brewing in my relationship. Those of you who have read my posts, know that i am having trouble with getting my boyfriend to listen to me....really listen, to how I am feeling and what my emotions are going through, and getting him to know that its not "him", that i just need to cry, or yell, or need a hug. He is having a hard time dealing with this new dx also, and he has never known how to deal with emotions very well. When he starts feeling upset, or scared, he gets angry, at the world. For weeks now, I have been trying to get him to watch "the spoons theory", it helped me with my boys, it helped them to understand how I feel on a daily basis, but in a way that they could understand, even at their ages (13 and 10). I had given up on even asking him about it, but on Friday, he asked me to load it on my laptop so that he could watch it. I wanted to cry, but tried not to show any reaction. We made it 3/4 of the way through and he was crying, and by the end of it, he was angry. I immediately regretted loading it. We fought all day and I don't know if we are together anymore or not. I know that he would never put his hands on me, but i also don't know if staying with him is worth what it is doing to my health. I just don't even know what to do anymore. We have decided to stay in the same house temporarily until one of us can figure something else out. Since then, the flare has increased ten fold. I had a friend come get me and the kids yesterday, just to give myself a "break" but I am hurting so bad now, that I just want to get home and into my bed and not move for the next couple weeks. I am trying so hard to be strong, but I physically, and emotionally, just don't have any strength left. The stress is putting my body through the ringer, and I don't know what to do about it. Nothing that I do is helping, my heart has been racing for days, and this morning I woke up covered in a rash from head to toe (it has eased up some) but my skin still feels like I have a horrible sunburn, and I haven't been in the sun at all.

Maybe, being able to vent on here, will give me some much needed relief. I am going to take a shower and try and relax a little before I get myself home. Please keep me in your prayers today, I need all the prayers I can get! God bless you all

I was so pleased with myself today. I also found one of those walkers with a seat on craigslist this morning for only $20.00. I haven't driven in over a week but made it there and got it. Like you I also have to have it to sit down, mostly because of the pain in my legs. My friend had loaned me one she had but did need it back. Honey, this boyfriend problems is doing you more harm than good right now. You sound like you are in full on flare mode. You gotta get rid of stress! To me that means get rid of people in your life that are not supportive, loving or make any attempt to understand what Lupus does to a person or how you feel. Boyfriends come and go, sounds to me like its time for this one to go...

I am so terribly sorry about the boyfriend situation. I agree with lupussucks. Unfortunately, you are going to have good and bad days and if you choose to have someone by your side, it needs to be someone that understands. My fiancé and I were together 6 years. I knew something was wrong health-wise and so did he. So although we had put it off, we got married so that I would never have to worry about insurance or someone being there for me.

Again, I can't stress enough how helpful it was that he went to the docs with me so he could have a true understanding. He can tell when I am about to or am having a flare. Is it easy? NO! We argue, my memory is shot from a stroke and that obviously can be irritating as well as the fact that I was told in no uncertain terms that I would never work again. Having this said by the specialist with him there I think was invaluable. He doesn't blame me and chooses to take his anger out on the disease. I think that is a healthy attitude. Like having MS or cancer...this is NOT your fault.

There is someone out there for you that understands this. Negative people are going to literally make you more ill and can actually bring on a flare.

Finding outlets where positive energy is the goal i.e. yoga, counseling, close friends, etc. is a step in the right direction.

Big hugs!!!

I totally agree with whathappensinvegas. While I was reading your post I couldnt stop thinking like OMG!!! This sounds like the same situation I was just in while in the hospital. I dont think our significant others will ever know fully how we feel on a day to day basis, no one will unless they have it but to find that someone who can understand some of what you go through is key to being in a relationship and living with lupus. My boyfriend didnt understand why I was tired all the time or why I would cry somedays. Sometimes you do just need a hug or to cuddle or for that person to ask if there is something they can do for you. This takes time to get this across to them but if you feel like he is worth it and the relationship is worth it then hang in there. I wish you the best, ill keep you in my prayers.

I'm so glad you managed to get the walker but am sad for your relationship. If he cannot be supportive of what you are going through I'd think it wise to let him go. Your lupus is here and that's not going to change anytime soon. You have to take care of you and your boys. This added stress isn't healthy for you and will continue to put you in a flare. I know it's not easy and making a decision like this is causing you much distress. I am sending prayers your way!

So happy you found the walker on Craigslist and that it is helping you! I am so sorry about the relationship issue. It is hard when we don't have the support we need. Especially from our significant other. Lupus is lifelong, chronic. Only you know in your heart if your relationship can make it or not. I hope you will find peace in your decision. I will lift you up in prayer.

I felt the same way when I got my walker. Then my cat jumped up on the seat and was ready to go for a ride. I laughed and was grateful for the walker it helped so much.
I have not been in a relationship for 3 years now. I have been thinking of dating as I have more energy this year. Honestly I am not sure I have what it takes to be in a relationship . Some days I am glad to be by myself. I don’t have to explain why I feel this way or that way .
Take good care of you :slight_smile:

You are most certainly being prayed for.you WILL have better days.I am interested in the movie you mentioned, I have never heard of it, can I download it on my iPad? It sounds to me that your boyfriend needs time, and space. You don’t need to carry around his guilt, or whatever other emotions he’s loaded down with. Take this time for yourself, stress is a real no, no when it comes to lupus. Sending prayers.

Barbara,

I don't know if I am allowed to put the link on here or not lol Yes, you can watch it on your ipad, it is only about 14 mins long. It really helped me and my kids. We refer to "spoons" alot now.

http://www.butyoudontlooksick.com/wpress/xmedia-press/new-video-christine-miserandino-reads-the-spoon-theory/


Thank you all for your kind words and prayers! I m home now, and am still in full on flare, but have not had any added stress from him. I do not know if he understands that the stress is making me worse, or if he just is done with the whole situation. I was sorta hoping that he would be gone when I got home, it would have made it a little easier. I think that I am going to have to be the one to leave, but I don't have support like that. The only place I haave to go to, is two hours away. I don't want to be that far from my Drs, I finally found a good PCP and really don't want to lose her. Still at a loss as to what I should do.


Barbara said:

You are most certainly being prayed for.you WILL have better days.I am interested in the movie you mentioned, I have never heard of it, can I download it on my iPad? It sounds to me that your boyfriend needs time, and space. You don't need to carry around his guilt, or whatever other emotions he's loaded down with. Take this time for yourself, stress is a real no, no when it comes to lupus. Sending prayers.

Wow, good post! I swear I have been thinking I need wheel chair…but maybe on of those walkers would be better. I wonder how I got to be this weak…and like you i get dizzy all the time. Gotta do something for sure. Thanks for opening up about it.

JoJo: hang in there girl....you can do it. Maybe you should be asking your boyfriend 'why' isn't he willing to try to understand what you are going thru. Nobody 'wants' to be sick. Maybe instead of the spoon theory, he needs to go on a Lupus site to find out more about the Lupus. I know it must be very difficult, being sick, taking care of your boys, and pleasing your man. BUT, you have to come 'first', your health is the most important thing for you to contend with. My heart and prayers go out to you. One last thought, if you do decide to stay, 'is he worth it?' You could still keep your Dr., just have a longer commute to do it. I did it, and you can do it too......It's going to be the hardest decision you will make, but think of you, and your health FIRST....best of luck to you. Feel better.

The caregiver group is good for people like your boyfriend who have a place to go to understand the frustration that men go through when they have an ill partner. I am certain her is frustrated that he can't "fix" it for you.

Everything will turn out exactly as it's meant to...of that I am certain.

Biggest hugs

bak said:

JoJo: hang in there girl....you can do it. Maybe you should be asking your boyfriend 'why' isn't he willing to try to understand what you are going thru. Nobody 'wants' to be sick. Maybe instead of the spoon theory, he needs to go on a Lupus site to find out more about the Lupus. I know it must be very difficult, being sick, taking care of your boys, and pleasing your man. BUT, you have to come 'first', your health is the most important thing for you to contend with. My heart and prayers go out to you. One last thought, if you do decide to stay, 'is he worth it?' You could still keep your Dr., just have a longer commute to do it. I did it, and you can do it too......It's going to be the hardest decision you will make, but think of you, and your health FIRST....best of luck to you. Feel better.