Tag: Disability

Do you ever wonder?

On By WendyIn Disability, Life, Meniere's Disease8 Comments

What you are about to read is very personal.  I’m not even sure if I should be writing it.  Please, do not judge me, and do not pity me.  I will get through this, but I hit a big bump in the road today…and found out it was a sink hole.  It’s going to take some work to pull myself out.  But I know I can.


Do you ever have one of those days when you wonder if it’s even worth it?

Yeah, you know what I mean.  The thing you don’t dare talk about.

How can I think that way?  My life isn’t that bad.  There are so many people who have lives that are so much worse than mine….but maybe, just maybe, they are stronger than I am.  Or maybe I just want to feel like someone who can do something is listening.

I had the most lovely dream last night, I won’t go into the details.  My husband just doesn’t understand why I let dreams get to me so much.  It’s just a dream…but I know it’s my subconscious trying to tell me something.  Some way to help.

Then I woke up, and realized that I was still here.  And dang it, I can’t hear again.  Then Stuart tells me that he talked to Dr. Gray’s appointment scheduler, and they were trying to get me in sometime in January, but it just doesn’t look like it’s going to work and they don’t have their February calendar open yet.  What?  It’s the middle of January, and you can’t give me a February appointment?  That is just too frigging unbelievable to me.  And yes, I know that they are busy, but I’ve been trying to get someone to help me since December 4th.

Well, everything went a bit down hill from there.  And again, I won’t go in to any more details.  But today has been a very bad day.  After my complete melt down, I tried to sleep.  I kept waking up. I was having the weirdest dreams…these dreams I don’t think meant anything.  They were just weird.  One dream, I was stuck looking at a recipe on how to make Sauerkraut.  I know how to make Sauerkraut.  I just told my husband today that I needed to start a new batch tomorrow, but I don’t think I needed to just stare at the recipe for the whole time I was asleep.  Another dream, I missed jury duty because Stuart told me it was the wrong date, and they were going to arrest me.  In that same dream dog poop was legal tender.  They didn’t understand what checks were.  I was so confused, and so grossed out at the same time.  (but dogs were treated very well)

I’ve cried so much today that I feel like I have blisters around my eye lids.

I scared my husband today.  I feel so bad.  I do wonder if it is really all worth it.  I very logically think.  The problem is with me.  If I were not in the picture the problem would be gone.  Simple.  He completely freaked.  I’ve never seen him so freaked out.  My husband is always so calm and collected.  When I’m having an attack and thinking the world is ending he is my rock, and I saw the rock cracking.

I guess the problem wouldn’t be gone for him, not like I thought it would, I just never believed anyone could care for me that much.  I need to realize just how it would hurt him more if I were not here.  I may be a lot of trouble, but I’m his trouble, and he’s much more willing to deal with that than dealing with not having me here.  My mother died over 17 years ago and I grieve for her every day.  I never want my husband to hurt that bad, and I saw that horror in his face today.  I have to find a way to deal with all of this better than I have been.

Some days I feel so strong.  I feel like I can handle anything.  Then other days it will only take a feather to knock me over.  On most days I will think, how could I even think about such a thing?  But then everything will just come crashing down again.  I don’t feel like I hold things in.  That I don’t allow myself to feel.  But my husband and therapist say I do, then everything comes down at once.

Things will get better for a while now.  I know they will.  But I really need to be careful and not let things build back up like this.

Stuart and I are going to work very hard to find an outlet for us.  To try to not stay cooped up in the house all the time.  We need to find a place where we feel safe, welcome, and where there are people who have similar interests that we do.

Please, don’t worry about me.  I’ll be fine.  I have a good support group to help me.  I’m only writing about this, in case it may help someone else who may have some of these feelings.

PFAM Blog Carnival – Guilt

On By WendyIn Disability, Meniere's Disease5 Comments

Drowning in Guilt

Patients for a Moment is a patient-centric blog carnival revolving around those living with chronic illness. Twice a month, bloggers are encouraged to tackle the theme with their own unique voice and situation. Those effected by chronic illness – doctors, caregivers, friends and family members are also thoroughly encouraged to participate!

This month Glass of Win is hosting and her theme is : GUILT.
You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?

One of the definitions Wikapedia gives for Guilt is: a cognitive or an emotional experience that occurs when a person realises or believes–accurately or not–that they have violated a moral standard, and bear sole responsibility for that violation. It is closely related to the concept of remorse.

The definition that Webster’s gives that I think fits most here is: feelings of culpability especially for imagined offenses or from a sense of inadequacy : self-reproach

My disability is pretty hard to deal with sometimes, but the guilt that I carry around because of it is stifling.  Most of my disability is invisible, and that makes it harder, but I don’t think it makes it less real.  What makes it most difficult for me is being such a burden.

Yes, as the definition points out, I realize this guilt is mostly for imagined offenses, but it is very real to me.

I have this weight that is just bearing down on me every day when I think of how much I can’t do that my husband must now be burdened with.  Most days he has to do all of the house work, he often has to take care of my personal needs, I can’t drive so he has to do all of the shopping, take me to my doctor’s appointments, pay all of the bills, plus he has a full-time job.  I feel like I’m a useless husk of a human being, I can’t work, I often can’t even do for myself, what am I contributing to this life?  How could I not be drowning in guilt?  It is suffocating.

I used to be the friend who was there when others needed me.  I would bring a friend dinner, help clean their house if they were ill, help out when they were pregnant (or right after the baby was born)….now, I can’t do any of that.  I feel guilty that I often can’t even go to a friend’s birthday celebration.  When my husband is sick and I can’t help him, like he has helped me so many times, the guilt is nearly over powering.  (thankfully, he doesn’t get sick very often, and when he usually likes to just sleep.)

It’s funny, but one of the biggest things I feel guilty about is when I can’t cook dinner.  I know my husband doesn’t like to cook.  And I have celiac disease so it’s hard to eat out, plus we are trying to save money and not eat out as much.  We also hate to get things to go, all that wasted garbage that they send your to go things home in, it’s just such a waste.  More guilt.

I will often have a few days where I’ll feel better and I can get a few things done, and I’ll buy some groceries and start meals.  Then I’ll get sicker, and some of the food will go bad, and I feel guilty about that too.

How do I handle the guilt?

I go to therapy!  Actually, my husband and I go to therapy together!

My therapist keeps telling me that guilt is a useless emotion unless you are doing something that is destructive to yourself or others that needs to be stopped (like abusing drugs or alcohol, breaking the law…).  Then guilt can be a good thing and help you to stop, other than that, it’s useless.  I keep trying to remind myself of that.  I should not feel guilty for things I can not control.  I need to give myself a break, and I need to learn to ask for help.

My husband tells me how grateful he feels that he can be here to help me.  That makes me feel so wonderful that I have a husband that is so selfless and loves me so much.  But then I think, how many years can he put up with this?  But you know, that is not for me to decide.  He’s here, he loves me, he wants to help me.  If he needs help with this, he needs to ask, I should not feel guilty because he doesn’t ask for help.

My friends seem to understand.  Or at least they try, and the ones who don’t, well, I’m not too sure they should be my friends.  I would be there for them, if they don’t understand and won’t stand by me, then maybe they aren’t the people I think they are.  Some people are surprising me.  There are some people who I didn’t know would step up and be my friend through this and they are there.  I’m proud to say they are my friends.

I work hard when I am feeling well to make up for when I’m not.  I often feel better in the morning, so I’ve started cooking a lot more in the slow cooker, I just throw things in it in the morning, and it’s done that evening.  On days when I feel better I clean a little.  I don’t take on a big task, but I get something done.  (My husband argued with this point, but I said I’m trying to get better about this.  I used to start way more than I could finish, now I try to do a little at a time, so I can feel like I accomplished something.)

I’m learning to vent more of my emotions on the computer, this blog and other people’s blogs have helped a lot, so I don’t have all this guilt building up with nowhere to go.

I’m finding other people like me who have similar feeling and we are learning together that we need to not be so hard on our selves.

Even my doctor said I need to give myself a break.  This is hard.  I’m working hard even when it doesn’t seem like it.  I needed to step back from the situation and look at it as if I was a friend of mine and think about how I would feel about me.

I would think “Hey, she’s a pretty brave person who is doing her damnedest to make the best out of a very hard situation.  I don’t want to get in the way, but I wonder if she needs help?”  I know a lot of people are very busy and wouldn’t even think about helping.  Others are so afraid they will be bothering you.  But some people really would like to help, they just don’t know how.  I need to learn how to ask for help when I need it, and not feel guilty about it.  (I really hope my husband does too.)

The problem is a lot of people will say, “If there is anything I can do, just let me know.”, but they don’t really mean it.  What they mean is, “If there is anything I can do that is convenient for me on that particular day and time I will be happy to do it, but other than that…..well….not so much.”  Remember, when I said that I’ve found out that there are some people who probably aren’t my friends anyway….well, I don’t feel guilty about that.

This post is linked to Glass of Win for the PFAM Blog Carnival

ABC’s of Disability – the letter A

On By WendyIn Disability, Meniere's Disease1 Comment

Sunshine and Chaos has started a series of post titled the ABC’s of Disability.  I’ve decided to join her in this endeavor.

Her “A” is for Adversity.  Please visit her blog and read (or actually go to a video to see and listen) to an inspiring post about the positives Adversity can bring someone with a disability.

My letter “A” is for Acknowledgement.

It was very hard for me to acknowledge that I have a disability.  Sometimes, it still is.

I don’t mind being different.  I just don’t want to be dependent.  I must acknowledge that sometimes I need to ask for help, and it’s ok.

I need to acknowledge that I can’t do everything I used to.  I need to acknowledge that people will not think less of me because I can’t do things I used to do.  I need to acknowledge that I can do things in different ways.  I can become a stronger person in different ways.  I can learn more about different things.

I need to acknowledge that yes, I have a disability, but that doesn’t take away from who I am.  I am still Wendy.  Even if I don’t feel like it some days.  (Yes, saying this made me cry.)

The first step in being disabled for me is acknowledging that I am disabled.

I have to stop fighting it every step of the way, and finding ways to adapt my life to make it work with my disability not in spite of it.

I Acknowledge that I am Disabled, but I am still Able to be a viable, worthy, and wanted, person.