Trying to Adjust to my New Normal

[Guest guest]

I can't thank you enough for your sincerity, understanding, advice and amazing

support. I hope all the kindness you've shown me during this tough time, returns

to you xoxoxo

[Guest guest]

thank you!

Maddy

" Never be bullied into silence. Never allow yourself to be made a victim. Accept

no one's definition of your life; define yourself. " -H. Fierstein

> I have cancer, I will die from it, I grieved twice as hard and ten times

> longer over my fibromyalgia/CFS diagnosis.

>

> To everyone grieving over a fibromyalgia or CFS diagnosis, please allow

> yourself to move to acceptance and don't ever tell yourself you don't

> deserve to grieve because it's not cancer or it's 'just fibromyalgia' or

> 'just CFS'. NEVER let anyone tell you that you are taking too long to grieve

> or tell you you have nothing to grieve over.

[Guest guest]

On Aug 25, 2011, at 6:46 AM,

" M. " wrote:

> To everyone grieving over a fibromyalgia or CFS diagnosis, please allow

yourself to move to acceptance and don't ever tell yourself you don't deserve to

grieve because it's not cancer or it's 'just fibromyalgia' or

> 'just CFS'.

Well said, .

Grieving takes as long as it takes, no apologies necessary.

Understanding from loved ones may not be forthcoming. That mat be something we

will grieve as well.

Acceptance is the last stage of grief according to some things I read about

grief.

It is possible to accept what happens and still look for solutions, recovery.

Here's an Adult Swim cartoon (by Seth Green of Robot Chicken) about grief that,

while true, made me laugh and laugh:

Or google " giraffe in quicksand " for YouTube video or Adult Swim video version.

toni

cf-alliance.tripod.com/

[Guest guest]

Please don't feel sorry for me, I didn't bring it us for pity, I just want

others to benefit from my experiences whenever possible. I appreciate you

kind words none the less.

Sorry I didn't include my age, but it's in my signature (I'm 21).

I feel like my suffering could be more tolerable if it had meaning. If my

suffering can alleviate someone else's suffering, that could be the meaning.

Yes, I do know that sounds silly.

Steve M in PA, age 21

Married with 3 year old daughter

Duragesic 300mcg/hr (q48hr)

Actiq-600 (4/day)

OxyIR 30mg (6/day)

Grade II DIPG (Diffuse Intrinsic Pontine Glioma)

Fibromyalgia

Probable RSD

I am really sorry that you have to go through this. You are certainly seeing

things clearly, though. For many if not most the psychological adjustments

are at least as difficult as the physical. Coping requires an entirely

different way of living.

You are also quite right that adjusting can be as difficult for family and

friends as it is for you. You didn't say how old you are, but if you have

children, you have probably experienced them being sick or hurt and how it

can feel worse to a parent than being sick or hurt themselves. The disease

forces changes on them too. It is really important that you understand that.

These diseases often kill off relationships for several reasons and being

aware, respectful and considerate of the difficulties of family and friends

can go a long way to keeping those relationships healthy.

All of us have different situations, personalities and the like, but we do

also share a great deal of experiences. If you are having difficulties in a

particular area, we might be able to make suggestions but you'll need to

give us some details. Also, if you just need to vent, feel free to do so

here. You're among friends who understand much of what you are going

through.

Margie

[Guest guest]

Funny you mention the movie Castaway, Everytime I watch that movie I can relate

to the feelings of trying so hard to make something happen, only to get knocked

back down again. Thats exactly how I feel w/this illness. I think I am just now

(after 15 years ) of being sick entering the acceptance stage. It is one of the

most difficult things to deal w/for sure. I'm happy to hear others have made it

to this stage, gives me hope that I can as well.

Take care,

Suzanne

Re: Trying to Adjust to my New Normal

Maybe something that might help with you is what was suggested to me: Watch

the movie " Cast Away " with Tom Hanks. Watch it a dozen times if you have to. My

psychologist suggested that my life had become like that - I'm trapped on an

island that I desperatly want to get off but I can't. Is it better to fight it

and flail about because you want to get back? What do you do? You live as best

as you can and finally accept that you are stranded and you do have to live.

Believe me I know it's hard - But I have learned to live on my island. Perhaps

one day I will get off of it, I don't know but there is always hope. But I am

living in the meantime. So should you. Best of luck to you. BK

[Guest guest]

I had never thought of this. I remember this movie very clearly. I will try to

remember to live as best I can on my island I've landed on.

Thank you,

Anne

> Maybe something that might help with you is what was suggested to me: Watch

the movie " Cast Away " with Tom Hanks. Watch it a dozen times if you have to. My

psychologist suggested that my life had become like that - I'm trapped on an

island that I desperatly want to get off but I can't. Is it better to fight it

and flail about because you want to get back? What do you do? You live as best

as you can and finally accept that you are stranded and you do have to live.

Believe me I know it's hard - But I have learned to live on my island. Perhaps

one day I will get off of it, I don't know but there is always hope. But I am

living in the meantime. So should you. Best of luck to you. BK

>