I Don't Know How To Cope Anymore

[gertie]

Let me begin by saying I am very thankful for what I have & how well I am compared to a lot of people with terminal illness. But I do have times I think of all the living I've missed over 30 years. My body goes from having migraines, partial seizures, costochondritis, neck pain, fibromyalgia, Meniere's, degenerative arthritis, thyroiditis, gallbladder attacks, IBS, bladder, nerve pain, heart arrthythmias, severe chest pain, & on the list goes. I don't ever seem to have a moment I'm not stressed from something going wrong with my body. I can't remember a time I was not miserable from something. Even dread being awakened from sleep with severe pain, never knowing if it is something I need to have seen about or if it will pass. Sorry for long vent. I can't take med's so I'm limited to what a dr can do for me so I'm trying to suffer in silence & not cause anxiety for DH. No one understands anyway. How do you cope with this?

[looneymom]

Hi Alicia,

I hear you loud and clear. I watch my son go through his misery everyday. The only thing that keeps me going is searching for answers online, seeing new doctors and more testing. As I look at your list of illness and symptoms, I wonder if your body is suffering from some type of immune, autoimmune, or metabolic related disorder. My son has some of these symptoms and like your list, his list goes on also.

Coping with POTS for my son and me is a daily thing. Because his condition is worse right now, we use many distractions and take many breaks thought the day. A recent doctor suggested that he should be seeing a therapist but Tyler has no desire to talk about his illness. He is not crying or depressed and laughs at things that are funny on tv. His way of coping is getting his mind off his illness. He does miss public school and has lost touch with his friends. He plays games online and I monitor who he is playing with online. He has friends from virtual school that he can also visit with online. If something is bothering him, he does make it known. Are you able to get out and visit with other people? Or maybe just talk on the phone with a close friend.

Have you thought about pet therapy? A new kitten or puppy that's house broken might help. We have a new house guest and it has helped raise Tyler's spirits. She has to be bottle feed but she was easy to house break. Her name is Midnight and she is a 4 week old kitten,

Rachel

[Becia]

You know, I ask myself this everyday. How am I going to cope with how I'm feeling compared to what I have to do, to who I'm going to be around, where I'm going to be going. And my answer is, I don't know. There are days I have no clue how I have made it without passing out into the double digits, how I managed to not throw up because of the screaming migraine, how I managed to not hurt myself when having a seizure on the stairs trying to crawl into the house. I don't know now I cope.

I do know I cry a lot. I curl up in bed with panic at the thought of leaving my room. I journal my feelings. I cry in the shower. I listen to music that fits my mood, and sometimes those tunes are a bit rough around the edges, and sometimes they are all flowers.

I have no advice, but just (hugs) for ya.

[KareBear]

Alicia,

You have every right to be mourning the loss of your life before illness, it's something those around us cannot comprehend most the time, but I know what you are feeling and it is the hardest thing to go through. Even when we try to focus on other things, our bodies constantly remind us we are sick.

"Suffering in silence" is not something you should have to do. It's hard keeping everything bottled up inside. Venting is important and getting support especially on the rough days is needed, so you dont have to apologize here, we understand. If you have friends or family even willing to listen so you can talk about things bothering you, then take them up on that. They may not be able to relate or truly understand what you go through but sometimes just a shoulder to cry on helps.

I'm sorry you are going through all of this right now. Like looneymom said, a pet can do wonders. I have a 4 month old puppy who is my constant companion and does wonders for me. I dont know what I would do without him.

Hang in there. I hope things get better for you soon!

[gertie]

Thanks for your replies. It means so much to me to have you to talk to. I do have autoimmune problems. I'm through whining now.

looneymom, your son is so lucky to have you. It must be extra difficult for a child.

Becia, I hope things get better for you soon. I hate leaving my home (my comfort zone)for any length of time. I'm afraid if I start crying I will completely lose control & never stop.

MedicGirl, I can't imagine the stress you're going through now. It makes my problems so trivial. I hope you have a full recovery.

I have always had animals & even bottle fed some orphans & they were my babies at the time. I lost the 20 + year old cat I adopted when she was a baby. She had been my constant companion for over 20 years. It was the hardest loss yet I'm still mourning her. I don't have the physical strength to take care of another one yet. Maybe someday.

[KareBear]

Thank you Alicia. No ones problems are trivial here. It's all life altering and that's hard no matter what the cause. You were in no way whining, we all need someone to talk to when things get tough and I'm glad you came here for that. I'm sending (((hugs))) your way to help you get through this

[gertie]

Thanks MedicGirl, You are in my prayers & thoughts.

[KareBear]

Good morning Alicia, how are you feeling today?

[gjensen]

Alicia, I am new to this stuff. I really do not have the right to comment. I would hate to say anything out of place. I have thought about you over and again since that post.

What you are going through is difficult. Only you could know what it is like. I don't and I am not pretending to.

Before all of this took over, with my boys, I had got on the subject of the "little things". As a kid, I enjoyed flipping rocks and logs looking for the little hidden treasures. I would spend my time outside looking for these treasures. If I would hastily walk through a meadow or wood, I would miss what I was looking for. It was a little wildflower tucked away here, or a little fascinating critter there. I found life everywhere, and more of it in places that we would normally over look. So much was hidden away.

This spring I took my oldest son to a little State Park down the road, and that is the subject we got on. The little things. Slowing down, and stopping to enjoy the little things. A purple or green damselfly here. A butterfly there. That little wild flower hidden here. I always felt that someone took special pleasure in showing us in those little things. Not the big things. The little things that we were too caught up to see.

Along the way, I noted a man looking around the site. For some reason, he caught my attention. Later, my on My son said that he had his attention to. As we were leaving he motioned to me. I got out and approached him. He had questions about the park.

He drove from Maryland to SC to see this park. His wife was from here. He was from Maryland, and they had lived in Maryland together since the 70s.

She passed away last summer, and this spring, when he was sorting through some of her stuff. He found an old wallet. In this wallet was a card certifying his wife as a minnow. She had learned to swim at this park, and she completed the first step. This made her a "minnow".

This man drove all the way from Maryland just to see where his wife had learned to swim. She was gone, but he was still enjoying her. And what he was still enjoying was those little things. What his wife had kept through all of those years was a little thing. He drove all of the way from Maryland to see this little thing.

As we parted he mentioned that we were all a minnow once. I did not have a reply other than I think that I still am. I am still trying to learn how to swim.

One thing that this illness has impressed on me, was how good I had it. And how much I regret not slowing down to appreciate the little things. Particularly with my wife and boys. I have been so caught up with my foolish ego and ambitions. I always wanted more and it was never enough. I was trying to fill a barrel with holes in it. It could never be filled.

Now I am getting caught up within myself, and I am doing the same thing, in a different way. My family is away right now, and I am looking forward to them being home. Right now, I just want to see the smiles and hear the voices.

All that really matters is the little things, and in the end all that will matter is the little things. I am trying to, and I hope that you can, take some pleasure in some little things. Now matter how little they are.

My wife rolled over the other night and laid her arm across me. Before, I would have never thought anything of it. Now that little thing is big. I would have held that moment forever if I could have.

[KareBear]

gjensen,

That's a really special story you shared, I know I enjoyed it and will remember it. Thank you

[gertie]

MedicGirl I had a good day for me, not as many problems at once to deal with today. One day at a time. You're due & deserve something good coming your way soon.

gjensen, It is such a good feeling when we meet someone that makes an impression in our lives. I didn't take time to appreciate my family when I was well either, always busy. I've learned a lot since I've been ill but most of it is too late. I do love Damselflies & Hummingbirds, can't wait until winter's over & they're here again.

Thank you both.

[gjensen]

It is not winter here yet, but it is coming. I am looking forward to spring myself.