Re: Seeking Support Brigade

[Guest guest]

I'm sorry you are feeling so down right now. I usually see you giving uplifting

thoughts here on the group. But, I wanted to let you know you are NOT alone. I

know exactly what you mean when you said you don't feel as if you fit in the

disabled world or the well world. I too feel ostrusiZed ( forgive the spelling)

both worlds. Just yesterday I was at Walmart picking up a prescription and a few

household items as I was completely out of everything in the house. I hadnt been

able to go shopping for the last month. Anyway, as I was saying I was in the

store getting meds because I had to go to the ER and was diagnosed with a

cervical spine strain. Has anyone else had this before? I am feeling as if I'm

floating in water all the time and I have extreme pressure in my head especially

after being upright for more than 30minutes. The only time I've found relief is

when I first wake up in the morning and my 1st 30 minutes of the day is great.

If anyone has experienced this please give me your feedback. But back to what I

was saying because I was feeling so bad I used one of those automatic carts to

do my shopping. As I was almost done and getting ready to leave, one if the

associates came up to me asking me to give the cart to an elderly man that was

sitting on a bench nearby. Luckily, I had a friend with me because I couldn't

drive and he was gracious enough to carry my items out to the car for me and

pick me up curbside. My point is the associate and the elderly man was looking

at me as if I didn't deserve to use the cart. I just politely told them I

definitely know how it is to be disabled and not be able to walk far. I smiled

and handed on the cart because I have such high regard for the elderly but part

of me really wanted to let the associate HAVE IT!

I can also relate to how you said everyone expects you to be at there beckoning

call

Even though they know that you have an illness that is very debilitating. I

relate to feeling required to meet their needs. And all the while on the verge

of collapse yourself. I to have the biggest problem with asking for help or

anything especially from my family and friends. I have this thing in my head

that if they really wanted to help they would do it without me asking because

I've told them a million times about my illness. So I feel very resentful and

I'm sure they feel resentful towards me because I end up falling short on so

many things. There are times I just can't grin and bare it anymore and I

literally can't get out of bed. In fact I'm bed bound most of the time and they

( family, friends, doctors) still JUST DON'T GET IT!!!! I still get the drive me

crazy comments like, you need to get out of the bed that's why your so sick, and

the rolling of the eyes or etc. I've gotten to the point that I don't want to

talk to anyone not even my mom because she calls me everyday and her first

question is " well how are you today? " and it's like she wants me to say I'm

GREAT and there's nothing wrong. So now my answer is I'm doing fine no matter

how bad I'm feeling. I've even been in the ER room so sick and I just tell her

I'm fine! I don't even have the mental energy or words to try an explain my

illness to anyone anymore. I really have given up! It's so hard to live with

such a debilitating illness that no one understands or seems to even care. They

cannot get over the physical appearance and feel that because we look normal we

must be malingering. Well, I tell you what id rather be Battling any other

obstacle in life than this one right about now. I wouldn't choose this one if I

was making it up or had a choice.

I'm sorry I got off on my own high horse and my intent was just to let you know

that I totally understand how you are feeling. I wanted to tell you I appreciate

the kind words you post to others and remind you to think about the good advice

you've given us and DONT GIVE UP!

I posted once asking advice on resources or advice for people that have little

or no support. I just wondering what are some things you do to help those of use

that are bed bound and having to crawl on hands and knees to get stuff done. I

can't do any housework, I can't cook, I can barely get up and go to the doctor

or store when I need to. I go without eating because I just can't find the

strength to cook. Im ashamed that I go a day without bathing because when I do

it's the only thing I can do that day. I have trouble getting the kids out to

school because I can't get up to get them ready to go to school. Im trying to

keep up but I'm drowning and im on the verge of collapse. As, I stated earlier I

just had a trip to ER the past weekend

.. I was hospitalized last month for 8 days. Im scared to death at whats going to

happen to me and my children. I don't want to get into legal trouble with the

school over not being able to get my kids there and more importantly I don't

want them to suffer and miss out on their education. It's always been extremely

important to me! However, I'm finding the more I push the sicker I'm getting.

Please advise!!!

---In CFAlliance , jo Reynolds wrote:

>

> I havent posted in a long time but here i am now. It hasnt been a very good

year for me compared to some other times. Generally ive not said anything and

when i have it's been to try to tell someone to look on the 'up' side. I'm

grateful for many things but right now i'm feeling drained from everything. I've

been feeling ill and in pain to point of having to crawl on the floor on hands

and knees to do things. Being on my own it's hard to just 'stop'. I think the

hardest part right now is having parents knowing i'm ill and never calling but

i'm calling them to check on them. People i thought were friends are acting like

they can call or not call and i have nothing to do and when they want something

or want nurturing it's expected. I feel like i'm not fitting into the disabled

world or the 'well world'. I think most of you on the group have families,

spouses, others in some fashion. It's very hard for me to take 'help'. I'm very

independent headed. I feel

> very alone. Sometines scared. It was said in March i have DDD and arthritis

but i dont even know what to think of that. well there's more but i'll leave it

at this and ask if there's anyone out there who feels like i do and if theres a

support brigade(how IS that word spelled anyway? cant spell lately either!) out

there. Excuse any typos.

>

[Guest guest]

On Aug 22, 2012, at 1:42 PM,

" angeliac " wrote:

> I can't do any housework, I can't cook, I can barely get up and go to the

doctor or store when I need to. I go without eating because I just can't find

the strength to cook. Im ashamed that I go a day without bathing because when I

do it's the only thing I can do that day. I have trouble getting the kids out to

school because I can't get up to get them ready to go to school.

Hi Angeliac,

I relate to all you describe here except my offspring is 41 now.

How I cope is through distractions. I watch alotta tv, read news on iPad, read

and write emails to friends who are also trying to cope with these conditions.

I eat already prepared food like cold cuts (without bread but with mayo and

lettuce when I have it), easily roasted meats. My local market carries already

cooked ribs, pulled pork and pulled chicken, roast chicken. It is more expensive

to buy already cooked foods but what are your health and feeling better enough

to get kids to school worth?

I take no showers, bathe (in Epsom salts and baking soda) rarely (every time

someone I care about comes to visit, rarely). But I have clean clothes and

change clothes occasionally. I also clean up with Sage Comfort Cloths (which I

cut up into quarters [stored in Rubbermaid] or I could not afford them), best

price from Amazon in bulk.

When I was sick but undiagnosed when my offspring was pre-teen and a teen, I

paid offspring to do laundry and dishes, to bake my favorite oatmeal chocolate

crunch bars.

Maybe your offspring are old enough to help in some ways.

Stress is a major contributor to symptoms so learn to relax your standards for

housecleaning. Of course, no matter how relaxed my standards, whenever I do

housework, my hyper-focus takes over and I always overdo.

So, I just don't do housework anymore. I have aides who come once in awhile to

help. Some really want to dust and vacuum but I am so stress- and noise- and

dust-sensitive, I prefer the dust to remain intact. The noise of vacuum cleaner

is too ever-lovin' much for me but is as stressful as my aides let loose around

my mountains of stuff stacked all around.

I have aides come into my home to help because I qualify for help through the

Federal Developmental Disabilities Agency, a part of US gov't's Dep't of Health

& Human Services. .

And so do you. And so do many here.

toni

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