Fibromyalgia and Chronic Fatigue Syndrome Support Community Group
This is a group based on supporting those who have been through the pain of Fibromyalgia &/or CFS & giving them the inspiration they need to keep going. It may be a hard road, but together we can do this!
Every day is a fight for me. Was diagnosed several years ago with fibromyalgia and chronic fatigue. Now they've added depression and type 2 bipolar to the list. Am married with 2 kids which makes the struggle harder because I often force my self to do much more than I should because I want to be there for my kids. Hubby is a 'suck it up and get on with it' kind of person so no support there. Besides that he works away for 17 days then home for 4. Lost my job a couple of months back because I was taking too much time off. Lately been feeling like the depression is taking over. Spending lots of time in tears. No one to talk to. It's even worse when I break down in front of my kids. The way my toddler looks at me with so much concern in her 2 year old eyes is heart breaking. My older son is at a loss because he doesn't know what to do and often thinks he caused the melt down even though I try to reassure him it has nothing to do with him or his sister. Then I feel a thousand times worse because I lost control in front of my kids and they shouldn't be burdened with that. Have looked for support in my community but there is none. Have seen a Psychiatrist and a psychologist both were no help. All they did was have me answer questionaires. It seems like for every step I take forward I fall 2 backwards. Have tried many different meds, none helped. Some meds out there I couldn't try because I can't afford them. Tired of being called lazy if the dishes aren't done right away or if I put off some house work until another day. Some days my kids are the only ones keeping me here. They are my reason for living. Just feel so lost and alone all the time and don't know where to turn. Family Doc suggested I try an online support group so here I am. Currently trying to pack up my house to move with no one to help me. Hubby is away working. That's been really hard since most days I can barely manage to get basic day-to-day stuff done - if I can even get that done. Just feeling really overwhelmed at the moment.
I also have several severely limiting physical conditions, including CFS. It is difficult and depressing, and something lots of docs seem to teach for is a psychiatric diagnosis, since there are no current treatments for CFS and fibromyalgia. Don’t necessarily buy into the diagnosis of mental illness. So much of what seems to be going on for you is situational based on your physical diagnoses, and lack of support. I also have a child who has been going through all of my medical trauma since he was 2. He is now 13, and clearly says “Mom, don’t apologize. You can’t help it. You’re sick and doing the best you can”. I think being very clear that your mental state (depression, anxiety, etc) is a result of your physical condition with your doctor and husband might make all of the difference in how you accept yourself. There is an amazing documentary called “Unrest” about CFS and it’s efects, as well as how different people receive support (or don’t). I am also married, and have a partner who expects me to be grateful for everything she does that I cannot, as if I’m choosing not to help. I am physically unable to move some days (I cry walking to the bathroom because it hurts so much to move) but my mouth and voice work, and this is how I relate to my child. I explain why I can’t move at the moment, and why I need help, and why I’m crying. Children have amazing empathy and an ability to habituate to any situation. Talk to your children, even through the tears ~ just tell them “Mommy hurts, so it takes me longer to do some things, so please be patient with me. I love you, and I’ll do my best to get you what you want or need”. Don’t try to hide what’s going on from your children ~ that really won’t help any of you. Ask them to help you so you can help them. You are in this together as a family, and your children need you. I know, without question, my son is much better off with me in his world than without me. File for Social Security Disability benefits so you have some income of your own coming in. Be completely honest with your doctor about how much you are suffering. Tell your husband to read up on Fibromyalgia and CFS, so he understands you’re not lazy or crazy. YOU ARE NOT ALONE. YOU MATTER.