Sharing Thoughts "I Don't Like Wearing This Hat!"

[jodibelle352]

I made the decission earlier to share some of what I've been keeping "inside" with the hopes that if I share these feelings it will help me with my remission. It's important to have a good Dr, meds and support system but your head needs to be in the right place also wearing the right hat. LOL

Each and everyone of us have a closet full of hats and at times we are quite a sight to see because on certain days we wear several hats at a time. Some hats you will recognize are;Mother, Father, Sister, Brother, Grandma or Grandpa...............I think you now get the idea where I'm comming from now. LOL But there are many other types and styles of hats we wear that we've recieved and are unable to "return". The are NON-RETURNABLE with NO EXCEPTIONS (I hate that last phrase with a passion)!

I'm quite comfortable wearing; Mom, Sis, Grandma, Wife etc. the perky sort of hat with a natural flare to them. The "illness/patient" is a hat that is "non-returnable" and I have fought having to wear this hat kicking, screaming all the way. I'm not comfortable wearing this hat and I look like hell wearing it!

I am more comfortable wearing my "caregiver" hat. As I look back on my life I've been wearing this hat since I was 8 yrs. old when my baby brother arrived and have been wearing it now for 48 yrs.

I took care of my brother growing up as the oldest. Helped care for my elderly Grand-Father when he came to live with us after he had a stroke. Wore a "Mother's" hat and "Caregiver" hat when my 1st child was born with Down's Syndrome and needed very special care. When she passed away a "Grieving" hat was received which I've had to dust off and on now and again over the years.When my Mother was DX's with cancer I wore my "caregiver" hat. When my son was DX's at 14 months old with a congenital heart deffect and was hospitalized off and on until the age of 9 I continued to wear the "caregiver" hat. When my husband was DX's with Prostate Cancer and COPD over 13 yrs. ago you already get the picture of what hat I've been wearing right up to the present.

18 months ago was when I first started showing medical symptoms that something wasn't quite right but I had an explination for each and everyone of my symptoms. Yesireeeeeee Bob! Financial problems living on a fixed income isn't easy, not complaining mind you but I don't say "No" very often if ever to my children or Grandchildren. I don't know why but saying "No" just sticks in my throat. I just swallow hard, smile and nod my head and after they leave I cry and cry and kick myself for being such a Whoosie!

Nobody knew my feelings because I DIDN'T TELL THEM! I still do that which causes "stress" build up with the high possibility of an enormous explosion to take place. LOL Which has happened because I keep everything inside. Usually, when I'm pushed to the breaking point my mouth overides my butt and then !

I'm a "caregiver" it's the hat I've become comfortable wearing. I don't ask for help because I give the help I'm not comfortable receiving it. I don't wear the "illness/patient" hat very well because I'm not able to be sick right now, I need to be well so I can take care of my husband who needs carring for. I DON'T HAVE TIME TO BE SICK! When I have to wear this hat I'm not able to function in my normal daily routine.

What I'm affraid off is if I don't adjust my attitude towards wearing this hat that my remission with this desease is going to take along long time comming.

Thank You for taking the time to read this and boy I open for all the guidance I can get.

Love and God Bless:
Jodi

[tex]

Hi Jodi,

It's no wonder that you feel that way - I'd venture a guess that virtually all of us feel that way, during part of our "journey" with this disease. The sad truth is, when the realities of this disease really begin to soak in, something inside us dies. Because of that, we tend to follow the pattern outlined by the Kübler-Ross model, which describes, in five discrete stages, the process by which people deal with grief and tragedy. (You're probably familiar with this, since it was introduced in a 1969 book titled "On Death and Dying", by Elisabeth Kübler-Ross.) The stages, of course, are known as the "Five Stages of Grief":

1. Denial: "This can't be happening."
2. Anger: "Why me? It's not fair!"
3. Bargaining: "Just let me get better so that I can get out of the house, again."
4. Depression: "I'm so sad, why bother with anything?"
5. Acceptance: "I can't fight it, so I may as well learn to live with it."

I think that in our special case, we need to add another stage - namely:

6. Enlightenment: "I may not be able to cure it, but I can certainly learn to control it, and by doing that, I can get my life back."

I'm not sure which stage you are in at this point, but I can assure you that we all go through every stage, before we get to the final one. Hopefully, being aware of this pattern will allow you to bypass, or at least minimize some of the misery along the way, and make the trip faster.

Love,
Tex

[jodibelle352]

Thank You Tex:

I am aware of the stages of grief from past experience, but reading your reply it truly makes sense. I am truly taking in everything you've wrote and something just clicked. Dealing with this illness in many ways does create a grieving process with a persons loss of freedom, control as much as their emotional wellbeing.

In 1995 I was Dx's with SLE (Systemic Lupus) and it took me over 2 years to get to a remisssion. I was taking anti-malarial meds, prednisone and itch pills and the list goes on and on. I was a lot younger then and the fight for a remission was so different in soooooo many ways. This autoimmune desease is totally different. It crushes and person inner spirit while leaving them completely helpless having NO control over their normal body functions. It shoots their pride, self-esteem and leaves them at times NO dignity. Every and most of our confidence is fulled down the toilet with each and bout of D!

Thank You for such great advice and food for thought. Incase you haven't noticed, today has been a painful day. Lots of abdominal pain with some D and even constipation at times. Tomorrow's another day and I'm looking forward to my "spunk" to return.

Love and God Bless:
Jodi

[Gloria]

Tex,
I read the book by Dr. Kübler-Ross when it first was printed. Recognizing those five stages during trials has helped me get through many phases of my life. I think we go through them for any major upset in our lives, be it illness, tragedy, or grief. Thank you for posting them.

Jodi,
You sound like you have a good head on your shoulders. I think it's very helpful when we are able to pinpoint the source of our angst and you've done that very well. I hope you can get your life back soon and resume your caretaker role. There are many, many here who have achieved remission, so you have hope.

Gloria

[JLH]

I just sent part of that post to DH. Maybe this will sink in sometime in my life time.

OOPs, he's going to kill me, he just found out that I ate all the Klondike Bars. I can't believe I ate the whole thing....Not really, I think he got one!

[starfire]

Jodi,
I understand how you are feeling and I know you are very uncomfortable with your new hat (It's probably all beat up by now from you trying to wad it up and stuff it out of sight) but it will be more comfortable to wear later even though you'll never enjoy wearing it.

Actually, at this stage, I don't dwell on MC although I do keep a close eye on what ends up in the toilet. I don't get "surprised" very often with D but I do have a variety of "types of poops".

Hang in there............ It may be a slow process but you will find the right treatment for you and you will be feeling more "normal" sooner or later.

Our bodies are all so different that nearly everyone reacts differently to almost everything, but you will eventually get a handle on the course you have to take for your individual body.

Love, Shirley

[sunny]

Jodi....I love your hat metaphor! I think we can all relate to not wanting to wear the hat we've been given with the big MC!! on the front and the toilet paper holder on the back!!! I used to have a large hat collection when I was a Play Therapist that children could try on and then "be" someone else; sometimes to be who they were at home was painful and for an hour a week they could try on different hats and different emotions and know they were safe with me. One kid even tried to wear them all.....he was the care-giver in his alcolholic family and old befor his time.When you show up here on the forum you have often worn your "funny" hat and entertained others, and you will also be able to wear your mad hat and your sad hat and your frustrated hat and your "normal human being with pain" hat ; you will thrive here and after a while you will again have a large hat collection that goes beyond the "I am sick" hat. I hated my I am sick hat until I learned to embrace and like Dee said...not let it control her life.....and it will ....at first....for a while....and then you will roar back to life and that old hat will be much smaller and not so scary....it will be manageable.....unfair..ugly...disheartening...but ...manageable.