Help

not well I'm afraid. I struggle daily with memory and what I have lost. My husband has been wonderful, but, I worry that this may become to much for him to handle. I was at the top of my career and now it's all gone. I'm at home all day every day going out of my mind. I have been replaced at my job. The worst thing is when people tell me I should be happy to be alive. WHY? I want my life back.

Hi Amy. We understand your frustration. Unfortunately it has only been 5 months since your bleed. In terms of the brain healing that is not very long. You are still in what I call the mourning phase in your recovery. You want your old life back and it is not happening. However, just think how far you have come in 5 months and how much you will improve in the future. Give your self more time to heal and I have no doubts that wonderful things will happen to you! I will contact some other moderators and they will be glad to share their healing experiences with you. As long as you are alive…there is hope!!! And remember…you are not alone!!!

I commpletely understand how you feel. I have felt the same way from time to time. I too was at the top of my career and had a very active life. For me though I find I'm happier now that i'm not working. While I do get bored, I enjoy being able to be home to help my children get ready for school and being here when they get home. That is something I was never able to do when I worked. For a long time I wanted my "old life" back but not anymore. I was always stressed, I didn't spend enough time with my family, didn't truly appreciate all that I had. Now I know what is truly important in life and that is my husband and my children. I never sweat the small stuff. I'm very rarely stressed. Let's face it, when you've been where we've been you can understand real stress and everything else is minor. It took my a while to get to where I am now. You are still very early in the recovery process. Give yourself more time to grieve the old life. Then you can really start enjoying the new one!

I understand your frustration and how overwhelmed with emotions you are feeling, Amy. Although it's only been five months since your bleed, I'm sure that it feels like an eternity to you!

The depression and worry about your husband is perfectly normal...you have every right to feel this way. Heck, It's been seven years since my diagnosis and I still feel like that sometimes! :-) But I promise you, life will not always seem this bleek. You will find the sun again!

I have found some positives...my husband has been wonderful and really come through for me. We have grown even closer and our marriage is so much stronger now. My faith in God, while being sorely tested, has also grown much stronger. I have learned to appreciate people and little things more; and I am trying very hard to stop "sweating the small stuff."

Amy, please know that we are here for you if you want to talk, want info, or just need someone to listen.

Hang in there!

Connie

Hi Amy,

My partner went through the same process while he was recovering and had to stay home while I was at work. It is a long and lonely process, no matter the support you get.

My partner was telling me that he was fed up to be at home and that nothing seemed to interest him or excite him anymore.

We had rehab people coming at home and they helped him to go through that process, setting him daily and weekly targets.

I don't know if you are allowed to go out but a daily walk can make a difference. My partner had to go out everyday and was set different targets to help his recovery. He had to walk 10mins at the beginning and then had to increase the time gradually.

Also he had to go grocery shopping (checking what he needed to buy, make a list, go to the shop) which helped with his memory and concentration. He also cooked for himself, tried new recipes.
Since I am a Spanish teacher and he is Colombian, I asked him to help me create resources for my classes (create posters, texts and information about Colombia).

It depends what your interests are but you can always find something to keep you busy and slowly your interest will come back as your capacity slowly come back to normality.

You will improve everyday and get better, eventually find an another job. I know it is hard to believe but you must keep faith and carry on.

It seems that your husband is very supportive so you are lucky to have him at your side to give you strength and assist you in that process.

Hope it helps.

Best wishes

Hello Amy
I am so sorry to hear that you are feeling so low and know we have all been there. For me I thought I was never going to get better and I was also getting promoted at work right before I had my stroke. I thought at first I would be back to work in six months or less even though my primary told me a year but then I got the fistula and felt worse and was not diagnosed for another five months. I was not sleeping and had terrible head pain. I would get up every day even when I did not feel like it and I would at least walk to our mail box and sometimes my husband and I would walk a block sometimes more. I also watched lots of old movies and funny movies while in bed. I also did research and started to take supplements like magnesium, b1, b12, calcium, d3, turmeric, Cherry seed extract. I ate a great deal of Baskin Robbins ice cream
I stayed away from gluten as well. After my angio and embolism I had even more pain. My stroke doctor who is charge of my case I was able to go back to work in a lower position at first I was so upset but then I thought everything happens for a reason and my husband had to quit his job to take care of me so I felt like I really needed to go back to work at least try to do it. In August I was able to go back full time and my stroke doctor told me how incredible it was because they thought it was going to take me 3 years to recover. I told them it was due to the 24/7 care of my husband and he cooked as much as organic as we could. also celtic sea salt has lots of minerals that is not in reg salt that we need. I know its hard to look back and see our past. I loved my job ( not my boss) but I love my job and the people I work with and I feel like something else will happen for me. And for you as well. If you ever need to talk please contact me and I will send you my phone number. try to be outside in the fresh air if you can.
Angela

Hi,

I can completely relate to how you feel. I, too, was at the top of my game. I was an airline pilot, a captain. After my bleed, even now, I don't work. I often think back to how I used to be. I could do whatever I wanted and now I can't walk a straight line. It's easy to think about how you used to be. I still do it. I have been told and I agree, it's not a good thing. I can never compete with who I used to be, so I try not to think about that guy. At best, I try to do things that will get me closer to what I know. What I've known for over 40 years.

While it's sometimes funny to me, when people say I should be happy to be alive. I, like you, wonder why. What is there to be happy about. Before, I was happier than I knew. Give it time.

Try to think about what you still have left. You have your husband. I hold on to my physical health and strength. I used to ride and work out at the gym often. I walk every morning. I saw a guy in a wheelchair at thought, "At least I'm not in a wheelchair." Things could be worse. Bad things happen to good people all the time. Even this helps.

Regarding the introspection. Lots of time for that. I often think of what I should have done. Disability insurance. Probably would have gotten it, never thought I'd need it. Loss of medical certificate insurance (pilots need a medical to fly). Never got it, never thought I would need it. Boy was I wrong. Nothing I can do about it so I try not to think about it but I do anyway. The good thing about introspection is that I have learned more about myself and others than I ever knew. Use what you learn to your advantage. One thing I have learned and try to use is the fact that I can't control many things. None of us can. If I can't control it, I try not to worry about it. It would probably work for you, too. Try not to worry about what you can't control.

Be well.

Greg

Hi Amy
I know exactly how you feel. I'm sure everyone here has felt the frustration of wanting what you had before. I spent the summer of '94 right where you are now. My therapist explained years later that I was grieving for what I had lost. I wasn't buying that at first. Grieving is what you do when a loved one passes away or your pet dies. Eventually, I had to admit, she was right. I felt grief for the "old" me that was gone. Okay, so where do you go from there? There's always the "why me" phase of recovery. That's one I struggled with for a long time. As I read on a previous reply, "bad things happen to good people". The only answer I was ever satisfied with was that maybe the path I was on was leading to an unhappy or worse place. And this was life/fate/God's (whichever you believe in) way of re-directing my future to a better place. It may not be much, but it helped me cope. My best advice for today is to work as hard as you possibly can on your PT. This is your chance to be selfish and worry about your recovery. It sounds like you have a good husband to support you through this. Let him handle those day to day issues. Your job is to get well. Be strong. You'll get through this. Charles

My daughter is 10. She wants her life back too. Heck, I want our old lives back. I think it would be natural to feel that way sometimes.

But you have to remember to pick yourself up and push forward. Maybe there are other jobs you can do. Maybe you could do contract work at your old company, that way you can utilize your skills, without the day-to-day pressure and exhaustion. Maybe you could volunteer to do something small to see how it feels and give yourself a chance to prove you can handle SOME things.

The past is in the past. We can’t get it back. We can only move forward and figure out what is our new “normal.” There are also the seven stages of grief – certainly grieving about losing your old life. Maybe talk to a therapist. It does help to talk to someone who can be objective and won’t repeat or belittle everything you say.

Best wishes!

Reading all the responses shows that everyone responds differently to this AVM thing, but one thing is certain that it gives you a very different perspective. For example, before I was told of the AVM, I was extremely active, playing soccer, working out, cycling, scuba diving, etc. I had what I determined was a very successful career as well. Needless to say, I did not know what an AVM was or how much it could drastically change my life. But here’s the point, while no one ever said an AVM experience was a ride in the park, your attitude throughout this experience matters immensely. This is where a choice can be made. I choose to focus on the positive not liking the other option. I chose to go back to school and focus on the important things in life. While you might not agree with this, my belief is that everything happens for a reason. In my case, I have slowed down a bit, recognized that the stress associated with keeping up with everything was not only causing a rift with my child and family, but with my psyche as well. As it has been repeated here “I no longer sweat the small stuff”. It has given me a new, better perspective then I ever had before and it’s all because of this AVM thing. This site can help in that journey and in the development of a positive attitude in spite of it all. We have a humor group on here at http://www.avmsurvivors.org/group/l that may help and other groups (under the group tab on the main page) that you may wish to join as well. It has only been a relatively short time so recover and take care of yourself and we will always be here for you. Oh, and if I hadn’t said it already, welcome. :J

Hi. Sorry if I repeat myself. Again, I relate to everything you express. I was a Captain of an airline. Flying jets. It was everything I worked for my entire life and I loved it. Now I can't walk a straight line. I hate what I have become and miss what I had. But as Tina has said, we have to push forward. The past isn't something we get back. For me, I hope to get closer to who/what I was and did. Also, like you, I have been told to be happy that I am alive. No one follows with the how to be happy and of course, why. I don't expect to be happy anytime soon, if ever. I try not to think about that.

I don't fly, dive, ride, etc. For now. Now I work part-time as a Weight and Balance Planner for AA. It sucks, but better than nothing. I have to remind myself that I have hit bottom and I have to improve. I have to succeed as that is all I know. Again, think of what you can still do. Maybe it is with your current company or somewhere else. Look into volunteering.

I plan on having eye-muscle surgery in November, to hopefully correct the double-vision. Then, work on getting my medical certificate back and hopefully, fly again. I don't know what will be required, but I have to try. I have to try to get closer to what I know. Keep trying to get closer to who you were and remember, we have been where you are going. It's going to be an unholy beating but you are not alone.

Greg