I have been recovering now for alittle over a month now from the surgery. I hope most of you have a wport system to share your struggles and recovery with. I am 53 years old and have been struggling with isolatiion. I have raised 3 children and have 2 wonderful grandchildren. My life was full with being a single parent , work and sports. When my condition started 7 years ago and the desperation of finding the diagnosis, it has left me feeling exhausted and alone. I was never good at expressing my true feelings, so even sharing this is uncomfortable. I find myself scared to go back to work and scared to even be around other people. Thats where im at today thank you all for being here
I’m sorry that you are struggling with feeling alone, isolated and scared. Im glad you shared what you are going through. I think that is the first step to healing emotionally from all the ways this condition and having surgery affects us emotionally. I understand the feelings you described. I have only had symptoms and known that I have Chiari for the last 7 months and then had surgery in January. My life has totally changed and while the surgery helped, I still have a few minor issues. I think the hardest part is that we have an “invisible” illness. People tell me all the time, “Well, you look good!”, and I dont tell them how I really feel inside because I think they really don’t want to/have the time hear it. I find that to be very isolating. I, too am scared to go back to work partly because I haven’t fully recovered and I’m concerned how I will handle my high stress job, but also because I know I will face more of those conversations. I do have a great support system, but I still don’t always reveal to my family how I really feel because I don’t want to put any more on them than I already have. This is not what they want me to do, but it’s how I seem to respond. I think being a mother, too, affects us because we are used to taking care of and worrying about everyone else, and it’s hard to be on the opposite side of that. I hope you can find a caring person to share your real feelings with. Keep sharing on this site. I know there are many caring and supportive people on here who really understand what you are going through.
I pray you find some encouragement today!
Sonya
Robin, unfortunately I can relate. I do have a support system, but I wouldn’t always use the word “supportive” to describe them. They do their best but in truth others just don’t understand. Something I wish I had been more prepared for is the emotional aspect of recovering from the surgery. I’m 10 weeks post op now and have been on my own little roller coaster ride (pun intended). I really struggled with depression for the first 8 weeks. I’m still struggling a bit with it but it is getting better. The isolation is a big factor with feeling depressed, and unfortunately the isolation is something that’s hard to avoid during this time. I’m glad you reached out cause everybody on this site is “down with the chiari struggle”! It can truly be the supportive family that you need right now. I’ll tell that for me trying to focus on being positive about the blessings that I do have has made a bit of difference. I went out and got the film The Secret, which I watch often. It helps me to feel that I’m more in control than I realize. If you can find something to latch onto that is positive DO IT. (I recommend this film/book The Secret!!!)
Another aspect of my emotional state has been this: I’ve spent the last 4 years on a mission to find out what was wrong with me with the dedication of a soldier. Trying this and that, medication, therapies all with a mountain of hope. Now that I found the diagnosis and had the surgery there a kind of empty space. My mission is done…what next? It has been so difficult to relax into my new, “after” diagnosis life. I realize that I’m still brand new to this " after" stuff, but I hope that you can find some comfort that you’re not alone in your experience. My biggest fear is that the headache will remain. I have had stretches of many days with no headache at all, which is huge, cause before surgery the pain was intractable, but I want the headache to be done forever! I just started back to work this week and it went pretty well. The upside to this surgery is that when you tell people you’ve had brain surgery they get wide eyed and and generally show concern and support! I went home early one day this week cause I was just too tired with the 12 hour days, but over all it went pretty well. I have the tendency to try and avoid talking to people about the surgery, but I actually think its best to be talkative with co-workers because I think they take their social cues from us…if you are really closed up about it they will tend to not know how to respond, and then may not respond at all,which feels awkward.
How is your recovery going? Are you experiencing any pain or symptoms? Emotional-coaster rides? Keep talking to your insta-chiari family so you don’t feel so isolated!
Jenn