Illness is not our true self/soul

[Gingergrrl]

I wasn't quite sure where to put this post but the spirituality forum seemed like the best place.

Today was very hard for me and I have been crying all day and felt incredible guilt at all that I am putting my husband and family through due to my illness and my body failing me.

My husband and I got into a fight about all this but ultimately he said something very helpful that I want to try to meditate on.

He said that my core values of being kind, gentle, vulnerable, yet also courageous and strong
were still there and that this was my "true soul" or "true self" and not the illness.

I often feel like the illness and fear consumes me and this was a good reminder. I wanted to share it in case it helped anyone else.

 

[Jon_Tradicionali]

I agree, the core values which makes you unique are still there.

I just think they are almost always overcome by anger, irritation, sadness, guilt, hopelessness and fear.

Personally, I am positive that if cured, others will see the true person that you are. I am also convinced that you will see yourself for what you really are also. A person not clouded by limited overall function and ruled by negative emotions.

 

[AndyPandy]

So sorry you are having such a bad day. Sending you love and encouragement.

We are so much more than our physical capabilities allow

 

[knackers323]

Jon and ginger, what is the fear you speak of?

 

[Gingergrrl]

Jon and ginger, what is the fear you speak of?

@knackers323 I can't speak for Jon but for myself the fear is that my health will continue to decline regardless what treatments I try, that I will lose even more functionality, I have already lost the career I love due to this illness and I fear that my husband will regret marrying me and ultimately leave me or just stay with me out of a sense of duty or obligation.

On a day to day basis I fear when I have trouble breathing or tachycardia that my heart will give out before the doctors solve it. I fear my health insurance and short term disability will run out and we will not be able to pay our rent. I also fear the stress this is putting on other members of my family who are trying to help me.

I guess it is a mixture of fear, anger, sadness and guilt. I used to be such a high functioning person and could do anything and never appreciated little things like walking to the store and carrying home my groceries. I never thought twice about it and could work an eight hour day and then go to a concert after work.

Now I can barely walk across the room carrying a small bottle of water without getting out of breath. When the elevator is broken in my bldg, I am trapped and cannot walk up four flights of stairs. I guess I fear everything about this illness and what the future holds.

Sorry to be so negative right now.

 

[xchocoholic]

You have a wonderful husband. Definitely a keeper.

When I first got sick in 1990, I heard similar comments from friends. I could barely speak at times due to neurological problems and so when I did I sounded harsh or rude. I probably still do this when I have to push myself to run errands. This is a given if I have pem.

Tc .. x

 

[Gingergrrl]

So sorry you are having such a bad day. Sending you love and encouragement.

We are so much more than our physical capabilities allow

@AndyPandy Thank you and I appreciate it and all your support.

 

[Dreambirdie]

@knackers323 I can't speak for Jon but for myself the fear is that my health will continue to decline regardless what treatments I try, that I will lose even more functionality, I have already lost the career I love due to this illness and I fear that my husband will regret marrying me and ultimately leave me or just stay with me out of a sense of duty or obligation.

On a day to day basis I fear when I have trouble breathing or tachycardia that my heart will give out before the doctors solve it. I fear my health insurance and short term disability will run out and we will not be able to pay our rent. I also fear the stress this is putting on other members of my family who are trying to help me.

I guess it is a mixture of fear, anger, sadness and guilt. I used to be such a high functioning person and could do anything and never appreciated little things like walking to the store and carrying home my groceries. I never thought twice about it and could work an eight hour day and then go to a concert after work.

Now I can barely walk across the room carrying a small bottle of water without getting out of breath. When the elevator is broken in my bldg, I am trapped and cannot walk up four flights of stairs. I guess I fear everything about this illness and what the future holds.

Sorry to be so negative right now.

@Gingergrrl43 I am sorry that you're having such a rough ride. I have been in a crash for several months and can empathize with how you feel.

I wrote about this on another thread, but it probably wouldn't hurt to repeat it, that when your energy is depleted that *seriously* affects your brain as well. Your brain is part of your body, and your energy level affects your mood. This can lead to imbalances in the neurotransmitters, and when those are out of balance the result can be anxiety, anger, sadness, fear and depression, or a big nasty brew of all of the above.

I often refer to these episodes of brain imbalance as "crazy brain." And I've found (through much experience over the years) that it's not a real good idea to take anything crazy brain throws out at you as the absolute truth. In fact, I think it is a good idea (when under the spell of crazy brain) to ask yourself "IS THIS TRUE?" and then be real honest about the answer before you jump into automatically believing it.

It's sort of along the lines of when kids think there are MONSTERS UNDER THE BED, except these are monsters in the head. And as is the case with all monsters, you can't fight the fact that you believe them to be there, but you can at least go get a flashlight and make sure how real or not real they are... if you catch my drift here.

And I would add that your husband is a very wise man because he sees the real you beyond the surface effects of crazy brain. BRAVO for him! He's definitely a keeper. Meditating on what he has said to you about what a kind, gentle, courageous and strong person you are is a brilliant idea.

 

[Gingergrrl]

@Gingergrrl43 I am sorry that you're having such a rough ride. I have been in a crash for several months and can empathize with how you feel.

I wrote about this on another thread, but it probably wouldn't hurt to repeat it, that when your energy is depleted that *seriously* affects your brain as well. Your brain is part of your body, and your energy level affects your mood. This can lead to imbalances in the neurotransmitters, and when those are out of balance the result can be anxiety, anger, sadness, fear and depression, or a big nasty brew of all of the above.

I often refer to these episodes of brain imbalance as "crazy brain." And I've found (through much experience over the years) that it's not a real good idea to take anything crazy brain throws out at you as the absolute truth. In fact, I think it is a good idea (when under the spell of crazy brain) to ask yourself "IS THIS TRUE?" and then be real honest about the answer before you jump into automatically believing it.

It's sort of along the lines of when kids think there are MONSTERS UNDER THE BED, except these are monsters in the head. And as is the case with all monsters, you can't fight the fact that you believe them to be there, but you can at least go get a flashlight and make sure how real or not real they are... if you catch my drift here.

And I would add that your husband is a very wise man because he sees the real you beyond the surface effects of crazy brain. BRAVO for him! He's definitely a keeper. Meditating on what he has said to you about what a kind, gentle, courageous and strong person you are is a brilliant idea.

@Dreambirdie I just read your post three times and it was extremely helpful. Even though I couldn't sleep last night, I feel better and clearer today. I liked what you said about "crazy brain" and sometimes I call it "monkey mind" too especially when I am going in circles with a thought that seems to have no solution.

Thank you also for the compliments re: my husband. Sometimes with the severity of my illness I feel like I am holding him back and he deserves someone better than me who is healthy and can do all the things I used to when we first met.

 

[Dreambirdie]

@Dreambirdie I just read your post three times and it was extremely helpful. Even though I couldn't sleep last night, I feel better and clearer today. I liked what you said about "crazy brain" and sometimes I call it "monkey mind" too especially when I am going in circles with a thought that seems to have no solution.

Thank you also for the compliments re: my husband. Sometimes with the severity of my illness I feel like I am holding him back and he deserves someone better than me who is healthy and can do all the things I used to when we first met.

I am glad it was helpful. Thanks for letting me know.

I, like you, am also blessed with having a very kind and loving partner. I was mostly alone for the first 22 years of my illness, and it was often rough, especially during those times when I was bedridden. I know how lucky we are, those of us who have partners who love and support us.

Instead of beating yourself up for all you can't do, maybe focus on the fact that your husband loves you in spite of that, and then try to love yourself as much as he does. It's a challenge I know, but one that is definitely worthwhile in the long run.

My best wishes to you for relief from both illness and self-inflicted torment.

 

[AndyPandy]

Hi @Gingergrrl43.

I can relate to what you have said about your fears about your health in the future and relationships. I share similar fears from time to time, particularly when I am in a relapse (like now!)

Like @Dreambirdie, experience has taught me that this illness affects my brain and my thinking and this is much worse when my other symptoms are bad. It feels awful at the time, but passes.

Since I recovered my ability to read, I have read a number of books on personal growth, meditation etc. One which offered a number of ideas about how to cope with this illness is 'How to be Sick' by Toni Bernhard.

She has ME/CFS. The book is "a Buddhist-inspired guide for the chronically ill and their caregivers" and contains a number of tips on how to manage your thoughts. This includes "is this true?" as mentioned by @Dreambirdie.

I now use some of these tips to help manage my thoughts about this illness. Every bit helps. Just to clarify, this is not a ME/CFS book which paints the illness as a psychological one which can be fixed by changing your thoughts. It is more about coping with the realities of the illness. Toni Bernhard has been bedbound/housebound for many years. I'm not sure if she has improved.

I too am blessed with a great husband and we are close. He has had cancer in the past 12 months which has given him greater insight into what illness feels like. We talk often. He goes to counselling to help him cope with our situation. He struggles with the loss of the wife he knew who was fit, active, outgoing, professionally employed etc. He feels lonely when he goes out without me.

I encourage him to have breaks and get away with friends and family. He is away this weekend. Early on in my illness and again since then I have told my husband that I don't want him to feel obliged to stay in the relationship, or to stay out of guilt. I don't want to hold him back from a fuller life, particularly since he has had cancer. He is free to choose. Similarly, I am free to choose.

He wants to stay in the relationship, as do I. If this changes in the future, I know that I will survive.

Hope you are having a better day today.

 

[Gingergrrl]

Wow, @Dreambirdie and @AndyPandy you both just articulated so much of what I am feeling and experiencing. And I just ordered the Toni Bernhard book on Amazon (along with Sarah Myhill's new ME/CFS book.)

Reading is often very hard for me but when I find a book that really resonates for me it makes it easier to read. I am really looking forward to these two.

I actually had a similar conversation with my husband last night that I did not want him to stay with me out of duty or obligation b/c I felt such overwhelming guilt and he has become my caregiver in many ways and our relationship is different now.

He wants to stay and is committed to me but was able to tell me some things he would like me to change/work on that would help him (all fair and reasonable things and he has a very solid understanding of CFS) and after the conversation which continued this morning, I feel a lot better.

 

[Dr.Patient]

Yesterday was bad for me, wanted to put my neck through a meat slicer, and end this suffering. Today, I'm better! This illness is a bi*ch!

 

[Dr.Patient]

@knackers323 I can't speak for Jon but for myself the fear is that my health will continue to decline regardless what treatments I try, that I will lose even more functionality, I have already lost the career I love due to this illness and I fear that my husband will regret marrying me and ultimately leave me or just stay with me out of a sense of duty or obligation.

On a day to day basis I fear when I have trouble breathing or tachycardia that my heart will give out before the doctors solve it. I fear my health insurance and short term disability will run out and we will not be able to pay our rent. I also fear the stress this is putting on other members of my family who are trying to help me.

I guess it is a mixture of fear, anger, sadness and guilt. I used to be such a high functioning person and could do anything and never appreciated little things like walking to the store and carrying home my groceries. I never thought twice about it and could work an eight hour day and then go to a concert after work.

Now I can barely walk across the room carrying a small bottle of water without getting out of breath. When the elevator is broken in my bldg, I am trapped and cannot walk up four flights of stairs. I guess I fear everything about this illness and what the future holds.

Sorry to be so negative right now.

All of us here can totally understand you and feel the same things...

 

[AndyPandy]

Yesterday was bad for me, wanted to put my neck through a meat slicer, and end this suffering. Today, I'm better! This illness is a bi*ch!

A nasty bi*ch. Good to hear you are feeling better today.

 

[Gingergrrl]

Yesterday was bad for me, wanted to put my neck through a meat slicer, and end this suffering. Today, I'm better! This illness is a bi*ch!

@Dr.Patient Glad you are feeling better today too and it sounds like yesterday was just a bad day for many of us. Not sure why?!

 

[Tristen]

So true.....hang onto you, the real you. That's why hiking and running was always an important part of my every day......it was my #1 way of centering, of meditating, shaking off the world. Getting in touch with that part of me where the strength comes from.

Many things can throw me off center, disease being one of them. One of the things I dislike most about this disease is the self absorption that will inevitably result from suffering and struggle, and self absorption just feels so adverse to life.

Speaking of hiking, the forest and how much I love what it does for me, I love the phrase.... "Nature was made to conspire with Spirit for it's emancipation". Your hubby is right, hang onto that real part of you.

 

[SDSue]

@Gingergrrl43
It's sort of along the lines of when kids think there are MONSTERS UNDER THE BED, except these are monsters in the head. And as is the case with all monsters, you can't fight the fact that you believe them to be there, but you can at least go get a flashlight and make sure how real or not real they are... if you catch my drift here.

What an awesome analogy. (It's been rough here the last few days, too)

@Gingergrrl43 I've learned the hard way that my brain goes first when PEM is imminent. I get crazy inner dialogue and feel so hopeless, alone, and fearful. It reminds me in some ways of PMS - when you know you're being a b#@* and crying for no real reason, but you cry and b#@* anyway because it all seems so real at the time.

Your fears mirror mine. When I'm not in PEM, I have hope that I'm getting better. And when PEM hits it's almost like I'm falling ill all over again, down that dark tunnel into the unknown.

With time, I have learned that if I stop pushing and let PEM run it's ugly course, I come back quickly more without loosing more abilities. It was in the early phases that I did so much damage by pushing because I knew no better.

@AndyPandy Toni's book sounds helpful, and slightly more pleasant a read than my latest acquisition - a 400+ page tome about getting disability coverage lol.

 

[Dr.Patient]

When I'm not in PEM, I have hope that I'm getting better. And when PEM hits it's almost like I'm falling ill all over again, down that dark tunnel into the unknown.
.

Yep, that's why I say this illness is a bi*ch!

 

[xchocoholic]

Fwiw, I'd suggest looking at what you're ingesting. Food, supplements or drugs. I stopped having constant weird brain symptoms, probably inflammation, after about 2 years on the elimination diet. I get brain fog and petite mals but those appear to be from OI. These aren't the same weird feelings I was getting.

Some of my neuro symptoms vanished within the first year on the elimination diet but it took a full year for my ataxia to suddenly vanish. Along with the feeling like the floor was moving in waves under my feet when I was standing, brain zaps, lesions, etc.

Gluten and dairy are common causes of brain dysfunction.
That's why the gfcf diet is recommended for autistic kids.
The book Healing the 4 A's or other biomed autism books or websites explain this. There's more to biomed autism treatments tho.

I don't have access to other people's medical records, :/, but based on the hundred or so people I've met who've had positive reactions to the gfcf diet and mine, I trust this.

I'm frustrated with the bullshit concerning cfs and healthcare in general but that's expected. And different than brain dysfunction. Lol.

Good luck. X