Hello everyone. It has been a long time since I have written on here, but I do read a lot. Things have been so hard lately, and I am so extremely depressed. Sometimes I pray that i didn't have to wake up so that way i didn't have to feel the sadness anymore. My husband and i have been having so many problems and it is just killing me.
We have been together for five years, and soon after we were together I got increasingly sick, and could not work. I couldn't walk anymore and needed help doing normal everyday things. It took years and years to finally get a correct diagnosis and since then (about a year now) I have been on medication to try and get rid of it (unfortunately after having it for approximately ten years now, there is no way to know for sure if it will ever go away). I have been trying to figure out how to change my life goals to deal with my limitations, and have started writing a book, and hope that I can do public speaking after it is completed.
My husband has a job that is great for supplying the much needed medical costs for me, but he really hates it quite a bit. He feels the pressure of taking care of me and the pressure of being in charge at work. My husband grew up in a family of famous musicians... I am telling you this because I want to impress on you how serious it is to him to one day do these things himself.
He has recently started writing music with some friends of his and now I almost never see him. I am constantly struggling with the idea that he is always away, and why doesn't he miss me? I try to tell myself that he is working on something and that he is not doing it to get away from me, but this is a very painful time. He tells me that the pressures that he has from work, taking care of me, and everyday life has become overwhelming for him.
I have started to walk with a cane lately which is great news, it is a step up from the crutches! Today I did 2 loads of laundry, which I could not do before. I feel so scared. So many lymies lose the ones they love because of this stupid disease, I just cannot lose my soul mate! I want to be seen as more independent, and less of a burden and a patient. I am waiting to hear back from a counselor... what else do I do? Give him some space to breath? Try and show him I am OK alone? I don't know... please help me.
How frightening to have your partner pull away from you when you've been ill, just when you most need him. Long term illness can be stressful for families and partners. Many people coping with serious illness do not have the energy left to give to their partners. It take a great deal of fortitude on behalf of the partner to cope with this. They really need a support group of some kind that understands their situation. In my area they are starting a support group for spouses and partners. Do they have such a group in your area?
Do you really believe that he is away so much because of the music or do you suspect he is staying away because he feels like he can't cope? Is he the sort of person you can discuss something like that with? Talking to a competent (emphasis on competent) couselor it may help. And maybe just letting him know that you are empathetic to his situation. "I know it's hard on you when I am too ill to be there sometimes" or something like that. Sometimes just knowing someone else is sincerely empathetic is enough even if they can't change things right then.
I am so sorry that your dealing with this sadness on top of not feeling well. I think going to a support group and talking to others might help your husband a great deal. If he doesn't feel comfortable going maybe you should go just so you can have some added support.
Good news on being able to walk with the cane and getting around a bit better.
I wouldn't pretend that your okay to do it alone...because your not. Have you had a good heart to heart talk with your hubby about this? He may need some reassurance about your illness just like we need it sometimes. I wonder if there is an on line support group that he can look at. I am sure there is...maybe not for just lyme...but for families of people with illnesses.
I hope things brighten up for you. Please don't play your feelings down though to try and make things better. That will only make it harder for you. You have to continue being honest with yourself and your hubby. This is a terrible disease that is hard on us and on our spouses but you can get through it if you work together.
I am sorry it took me so long to respond. I wanted to read your back posts as I couldn't remember your history. My kids are home for the summer and my computer time is limited.
You are rightfully feeling depressed as this is a difficult disease to fight and it is hard for others to understand why they don't see you getting better.
I have had family members say to me "you don't seem to be getting better". Thanks for the moral boost! I know they are concerned but it makes me defensive. I try to educate family and friends about the seriousness of this disease, but after a year they have heard enough, after everyone they all know who has had lyme has gotten better. What is my problem? Maybe I don't have lyme like the others they have know who made quicker recoveries? I explain I was misdiagnosed for many years .........................
I think it is great you are doing laundry (did you ever think you'd be happy about that?) and getting around with a cane. That sounds like progress and you HAVE to focus on the positive. I know not easy, and I have my down days too. I have trouble getting around, use a cane and am so unbalanced I look like I'm drunk 24/7. Just getting my kids to where they have to go is a feat, and if I have to walk into school to talk to a teacher or go to a concert the anxiety is overwhelming. My husband has been doing almost all of that but there are times I have to go (like tomorrow).
I think it is great you have goals such as writing a book. My advise is to take it one day at a time. Work on yourself and concentrate on whatever you can do to be one step (even if it is a baby step) closer to wellness. When I think about the future and where will I be, etc I get discouraged and overwhelmed. I try not to go there.
I hope you will post as often as you want and need to. For many of us this is the only place we can get support from people who really understand.