Feeling Frustratrated, Depressed and Whiny

[lovetoscrap]

Okay, I am really tired so I know that is contributing. And I know I have tons to be thankful for and really shouldn't be complaining compared to what so many of you deal with every day but I am so frustrated.

I have posted a few times before around the boards about having severe Plantar Fasciitis in BOTH feet. It has been going on for years. I have had every treatment possible (please don't suggest treatment options--I truly have had ALL options alreadY) except full release surgery. I am not a good candidate for the surgery so my Dr and I are not willing to do it yet. I am trying to lose about 50 pounds to see if that helps first. Until then I am pretty much unable to walk for more than about 5-10 minutes before the pain is unbearable. So I am now pretty much cane and wheelchair bound for anything beyond the house or quick errands for the first time in my life.

I just got home from our first family vacation (not WDW) with me like this. We had a lot of fun, but I was so frustrated the whole time. I hated that wheelchair. I am a take charge, follow me, "let's go have fun kids" mom. I follow them around and play and get involved and this trip I was little more than a coat rack.

We went to an awesome Children's Museum in Rochester where I had to get help from a friend or my kids to push me--I dont' have the strength to get around in the wc by myself. Often they would just kind of leave me and run off. There was so much cool stuff so see and do but I just couldn't get to it. I was a bit active the beginning of the day but in too much pain to do much after the first hour. The kids just kept bringing me their stuff to hold. It was one of the first times I have ever been somewhere like that with them where I couldn't be involved.

We went to Niagara Falls and my poor DH had to put up with 3 kids, our 2 kids and me--push me here, push me there. Lots of hills to push me up and down--I felt so bad for him. I felt so damn helpless--I hate that feeling. He took lots of pictures of me and the kids but I just want to cry when I look at them. I have wanted to go to Niagara Falls all my life, but I never imagined that I would be seeing it from a wheelchair. I felt like such a burden.

On the way home we went to Hershey Chocolate World. It was so crowded--and they told us that really it wasn't very crowded by their usual standards. People kept stepping in front of us and it was so hard to keep from running over them. I wanted to shop but I couldn't get around at all, it was just impossible to get through with the wc. At one point I did just break down in tears because I was so frustrated with it all. We did the ride of the "factory tour" but missed the beginning because the wc entrance is through an employee hall so the whole family missed part of the experience. Did the movie and bunch of attitude filled pissy women tried to refuse to move when the usher told them they had to because they were sitting ON TOP of the reserved for wc rope they had put out on our seats. They then directed that attitude at me and my DD during the move. I don't want to be conspicuous.

I can't go the mall or take my kids clothes shopping now without DH because he has to push the wc. I am a VERY independent person. I can't stand this. I am a control freak--everyone knows that about me. This vacation was to visit my best friend and she commented that I really seemed subdued and different and that it was just so unlike me to not be taking control with everyone else following behind. She has never seen me just sitting down when there is fun to be had.

Thanks for reading if you got this far. I am going to bed. I just needed to vent, whine, share etc. I know I should be grateful that I can still walk, and that I have some hope that if I lose weight this may not be permanent. But for now I just am not sure how to cope/adjust. I have lost so much control and independence in the last few months and this vacation really showed that even more. And the fear that this could be permanent is terrifying me even more.

 

[MomOf2DisneyKids]

 

[WildGrits]

I'm so sorry to hear about your pain.

I too had spurs. Fortunately not at the same time. My first was only relieved by Endoscopic plantar fasciotomy. The shots did nothing. If you are mulling over this and have done the taping and shots and all the other stuff, I say get it done. My foot felt better immediately.

My second was relieved with just one shot and a taping. I also feel that Crocs helped also.

Other than a toothache, there is nothing worse than walking around with what feels like glass in your foot.

Oh yeah, I'm also 5'2" and 245Lbs. Sure losing weight might have helped but my grandmother who was far from heavy had them also. Please don't waste another year hoping that weight loss will improve it. The damage to your foot is already done. No weight loss is going to make a chunk of calcium disappear.

Good luck to you.

 

[LindsayDunn228]

Do you mind me asking why you were unable to push the wheelchair? Let me give you some advice. If you are going to have to have the wheelchair for awhile, make friends with it. Practice, practice, practice. You do NOT have to be "little more than a coatrack."

 

[alizesmom]

You're grieving for what you have lost and that is so completely normal. Allow yourself that grief and then find a way to become who you want to be, just in a different way. Karen

 

[lovetoscrap]

Do you mind me asking why you were unable to push the wheelchair? Let me give you some advice. If you are going to have to have the wheelchair for awhile, make friends with it. Practice, practice, practice. You do NOT have to be "little more than a coatrack."

I did push myself as much as I could. I can on hard surface floors, but on carpet it is really hard. We were at the museum for about 6 hours. After about 3 my arms and hands were just exhausted and sore.

Most of the time I only use a cane or crutches depending on how bad of a day I am having. So I dont' get much practice time. I dont' have much upper body strength and boy did my palms get sore. Anything to help that? They hurt for days after.

If I am going to the grocery store or Walmart/Target etc I use their electric cart--I need the basket on it for my groceries. Most other things I do are short, quick things so I just use the cane. The wheelchair is only needed for long outings. Of course I am also keeping myself at home more and avoiding things I used to do because I am not up to doing them and am scared of dealing with the wc by myself. I probably need to pull out my arm weights and start building up my arm muscles.

My first was only relieved by Endoscopic plantar fasciotomy. The shots did nothing. If you are mulling over this and have done the taping and shots and all the other stuff, I say get it done. My foot felt better immediately.

Surgery hasn't been completely ruled out and is still out there as an option, but I have a terrible problem with scaring after all surgeries. I have had problems healing after any surgery I have ever had and complications. I had cryosurgery for this on one heel that should have at least greatly helped me, but in my case the typical 3 day healing time became 6 weeks and in the end I was worse then before. That is why the Dr. and I are very reluctant to do the release surgery. I am not "typical" so he is very worried it could actually do more harm than good for me.

 

[Earstou]

Really, it sounds as though you have two options right now. One is to build up your arms with exercise or two is too use an ecv (electric cart or scooter).
I have Chiari and have progressive muscle weakness, restrictive breathing, and fibro from it. My trip to WDW in 2003, I used a wheelchair, and felt like you. Then in July, I rented an ecv, and had the freedom to do what I wanted, as long as the ecv could go there. It was a much better trip and I had so much fun wheeling around in my scooter. Now I just need to buy one!

 

[I Love Pluto]

I was also going to suggest a power wheelchair or scooter. It seems that it would give you a lot more personal freedom. You'll feel better being more independent. Good luck to you.

 

[bzzymom]

I am glad you vented. I am in a similiar type situation and I know how frustrating it is. You are not alone.

I am a ICU nurse and on May 14th I injured my back trying to get a confused, uncooperative patient into bed who was climbing out of bed. I did not herniate a disc but I tore one. I am still in pain. I have been told there isn't anymore I can do until this heals on it's own. I can not take care my 3 yr old DD by myself, so I have to pay for full time daycare. I have been to several doctors, physical therapy, epidural steroid injections and so on. I can walk short distances, but I limp because my left leg is very weak. Sitting is the worst. I haven't been on the computer as much. I had to cancel our summer trip to Cedarpoint in Ohio, and I was going to take DD to WDW for a week in October. I am at my most comfortable laying on my bed. I am a very hard worker, a go-getter type of person, and now I feel helpless. DS, age 10, is now back to school and I am having a hard time because he would come into my room and play cards and board games with me. Now I am alone all day.


Thanks for letting me vent too!

 

[delswife]

Nope, you're definately not alone.

I have been to tons of dr's appointments and specialists over the last year and their 'best guess' right now is I have RSD.

If I want to walk around the store I have to wear air casts (yes, two! My left foot got jealous of my right foot!) or I can't do it. I can't use my right foot to drive, but thankfully can still use my left.

My right cast is pretty much my foot. I really can't get very far without it.

I have been a major pain in the butt about getting a wheelchair or scooter. It's funny you used the word 'coatrack' because when I was trying to decide what to do about our Disney trip (after many of my friends pounded into my thick skull that I need one) that's exactly what I figured I'd become.

I am like you, total control freak. I don't want to be pushed around so I decided on a scooter so I can still have my indepenence.

I found a friend here that changed my life. I was hitting a pretty low spot because of my problems and she lead me to www.butyoudontlooksick.com

Read the 'spoon theory'. It really changed my attitude about my disablility. (Thanks Suzanne! LYMI!)

And if you get a scooter and are in Disney when I am, I'll race you down Main St.

 

[LindsayDunn228]

I am like you, total control freak. I don't want to be pushed around so I decided on a scooter so I can still have my indepenence.

I am a full-time wheelchair user. I am rarely, if ever, pushed and I have my independence. No scooter. Trust me, it is possible to live a full, non-exhausted life when using a manual wheelchair. You just have to be willing to learn and willing to work your butt off.

 

[delswife]

I am a full-time wheelchair user. I am rarely, if ever, pushed and I have my independence. No scooter. Trust me, it is possible to live a full, non-exhausted life when using a manual wheelchair. You just have to be willing to learn and willing to work your butt off.

Oh no. I'm sorry, I didn't mean it like that. What I mean is for some of us that don't use a wheelchair on a regular basis and wouldn't be used to pushing ourselves. It takes a lot of upper body strength to do that. I was just talking about taking a trip and getting around.

I'm sorry. I hope you understand what I mean.

 

[disneymom3]

On the MS board I frequent that spoon story is very well known. It helped me to try and explain it to DH.

Scrappy--I am sorry you are feeling frustrated. I do know how you feel. I used a wheelchair for part of a day at Epcot. (We didn't know then that I had MS but there was clearly a problem.) At any rate, DH kept trying to push me, but he would leave me in weird places all alone. Honestly he was being a real jerk about it. I decided to heck with him and took over my steering. I agree--it is very tiring when you are not used to it. It is a very hard adjustment to make. Not the end of the world, but I think learning and adjusting to changes is one of the hardest parts of dealing with a disability. Of course, I guess I really can't say that as that is the stage I am in and it seems hard. I am hoping that I will get more used to it with time and I really believe I will.

 

[LindsayDunn228]

Oh no. I'm sorry, I didn't mean it like that. What I mean is for some of us that don't use a wheelchair on a regular basis and wouldn't be used to pushing ourselves. It takes a lot of upper body strength to do that. I was just talking about taking a trip and getting around.

I'm sorry. I hope you understand what I mean.

No problem

 

[lovetoscrap]

Been an interesting few days here. Some cathartic I guess. I had my meltdown when I posted this Sunday night, but hid it from DH. He is a worrier. He has so much on his plate and has taken on so much more to help out since I have been unable to clean and cook and shop and all those other "wife and mom" tasks I should be doing. I don't want to burden him with my emotional crap also.

Well, he is also my best friend and knows me better than anyone so Tuesday night after we went to bed he said those dreaded 4 words "We need to talk." He said that he knew something was very wrong and that I was really not myself on the vacation and since we got back and he wanted to know want was going on in my head. I couldn't talk, couldn't breathe, I just cried. We talked and I told him my fears and frustrations. He can't do much more to help than he already is, but he does sometimes forget that the reason I am sitting on my butt so much is because I am in so much pain. I feel like if it were anywhere else I could just work through it, but when the bottoms of your feet hurt so bad it is like daggers going through you just can't walk.

Then yesterday I stopped into visit a good friend that broke her leg in 5 places at the beginning of the summer. She is very much like me, only about 10x more active! And she is completely immobile. She had to cancel all her summer activities (I took over 2 of her volunteer jobs) and her Disney trip. We visited caught up on the last few weeks since we have seen each other. Then the talk turned to how she is doing mentally and depression wise. We shared our fears and feelings and frustrations and hatred of the wheelchair, and of being a burden to our famies and friends. We both were amazed at how we are feeling the exact same things. I think we have bonded a bit closer because we truly understand exactly how each other is feeling.

The ironic thing is--she developed a very sudden and intense case of Plantar Fasciatis in one foot about 2 weeks before she broke her leg. She knows exactly the pain that I am in. We had plans to go to Costco together when that happened but she said she couldn't go because of the pain. I told her "no problem, we will get the electric carts and have fun racing around in them" She was nervous to use one for the first time (just as I had been weeks before when a friend who had Knee Surgery introduced me to them) but now she thinks that it was such a blessing that she is now prepared. She will be using them for a long time now as her recovery will probably take a few years.


Then, last night I went with DD to her Middle School Open House to get her schedule and meet her teachers (this is her first year of Middle School). My foot has been hurting quite bad the last few days and I can't put weight on it for more than a few minutes. I knew we would be standing in several long lines and then walking around the school quite a bit. I had to use the wheelchair--even with crutches it would have been too much. DD was so embarrased. She didn't want to help me with the ramps (I don't have the strength to get up them by myself) but was forced to. Of course while standing in the first long line she did say she wished she could sit down with me!

So do I feel better? I don't know. I guess I am feeling more normal knowing that what I am feeling is to be expected and that others feel the same way. I am actually thinking that once the kids are back in school we will have a routine and schedule and I can plan better. I also will not need to be on my feet as much as in the summer when we are running here and there all day long.

 

[Michigan]

Ok I have my flame suit on. This isn’t intended to make you mad but rather to make you move on with life.

Stop with the pity party make a decision in your life and go with it. If you think surgery will fix your problem then do it if not then have your doctor write a prescription for a lightweight wheelchair and use it. If you use the chair you can build up arm strength. You made it up the hill didn’t you? You did it because you had to. They make power assist wheels that attach to a wheelchair making it easier to push but you won’t develop upper body strength using them.

The longer you stay the way you are dependent on everyone and feeling sorry for yourself the worse you make your life, your husbands life and your kids life.

When you go on about how you can’t do housework and everyday things you send the message that you feel that someone in a wheelchair is useless. There is nothing that you didn’t do as a walking person that my daughters can’t do as fulltime wheelers other then walk. They vacuum, they dust, the oldest one cooks and the youngest one likes to do the pre cooking of the food.

Also there isn’t a sport out there that can’t be done by someone in a wheelchair. Between my two they do – swimming, track & field, karate, basketball, sled hockey, downhill skiing, handcycling.

Bottom line when you lose the mentality that the wheelchair makes you useless your life and your families life will be better.

By the way I to had plantar problems that shots didn't help but crocs did so I know what the pain feels like.

 

[lovetoscrap]

Michigan, no flames from me--you should be flaming me. I know that I need a good swift kick in the pants. Thanks for your words. You are right.

Part of the problem is that I am between both worlds. I am not in a wheelchair except for extended outings. It just stays in the car. In fact my Dr. doesn't even know I have the chair. I got it from a friend. He has just been doing this when I ask him how I am supposed to get on with my life and do alll that I need to. I am going to break down and ask him for a Handicapped parking pass next week because there have been some problems that would be helped by having that (wc entrances in seperate lots from regular parking, no wc acess except from handicapped parking areas etc..), but I am not sure he will agree to it. He keeps saying that if it hurts just stay off of it. But I can't do that. I AM trying to keep living my life, even if it is much modified from before.

No chance for an ECV type of chair, I don't think he would have even prescribed the manual chair--he doesn't even agree with me using my cane or crutches. He thinks I should just sit at home, or come back in and get more pain killers/narcotics which I won't take. I will use an ECV at Disney and anywhere that has them to make things easier on everyone, and I do like being more in control that way.

I am going to get a 2nd opinion from another Dr and see if I can get some other recommendations for daily management.

And I am trying to stop whining.

 

[lovetoscrap]

Nope, you're definately not alone.

I have been to tons of dr's appointments and specialists over the last year and their 'best guess' right now is I have RSD.

I have been a major pain in the butt about getting a wheelchair or scooter. It's funny you used the word 'coatrack' because when I was trying to decide what to do about our Disney trip (after many of my friends pounded into my thick skull that I need one) that's exactly what I figured I'd become.

I am like you, total control freak. I don't want to be pushed around so I decided on a scooter so I can still have my indepenence.

I found a friend here that changed my life. I was hitting a pretty low spot because of my problems and she lead me to www.butyoudontlooksick.com

Read the 'spoon theory'. It really changed my attitude about my disablility. (Thanks Suzanne! LYMI!)

And if you get a scooter and are in Disney when I am, I'll race you down Main St.

WOBIN! --not sure if you remember/recognize me--I had the "You know you are addicted to the DIS" sign in my siggy with the tribute to you last year that I also hung on my stroller at Disney. . . (my kids are still trying to figure out who the heck Chuck and Dave are )

I had no idea you were going through any of this. I have checked your site for stories/updates but not seen any for awhile--I guess I know why now I can't believe that it looks like I will miss you at WDW by 2 days I would so be racing you--and then buy you a drink! (after I got there first )

I have been looking through the Spoons site today and found some really inspirational things. But someone must have warned them that I was coming because when I tried to go to the message boards I get a message saying that I have been BANNED Gee, they usually at least me sign up and hang out a while before they ban me. WHO TOLD THEM I WAS COMING???

Okay, so my sense of humor is coming back some today. And seeing your posts also reminds me that when I am feeling low I really need some humor in my life. Off to reread some of my favorite trip reports of all time

Love ya, Mean It!

 

[Cheshire Figment]

In fact my Dr. doesn't even know I have the chair. He has just been doing this when I ask him how I am supposed to get on with my life and do all that I need to. I am going to break down and ask him for a Handicapped parking pass next week because there have been some problems that would be helped by having that (wc entrances in separate lots from regular parking, no wc access except from handicapped parking areas etc..), but I am not sure he will agree to it. He keeps saying that if it hurts just stay off of it. But I can't do that. I AM trying to keep living my life, even if it is much modified from before.

He thinks I should just sit at home, or come back in and get more pain killers/narcotics which I won't take.

I am going to get a 2nd opinion from another Dr and see if I can get some other recommendations for daily management.

Rather than a second opinion, it looks as if it is time for you to get a different doctor. Unless, of course, you have a very good reason to keep using him and are willing to put up with his attitude.

 

[lovetoscrap]

Rather than a second opinion, it looks as if it is time for you to get a different doctor. Unless, of course, you have a very good reason to keep using him and are willing to put up with his attitude.

Well, yes. It is kind of a sticky situation because our families are actually very good friends. He is one of the best podiatrists in town. I actually think he is a little too "close" to the situation now though. He is truly baffled by why I am not healing at all, and in fact getting worse so I think some professional pride may be getting in the way, and on the friendship side he truly cares about me, not just as a chart and number, and he is frustrated and concerned by the amount of pain he sees me in professionally in the office and socially outside of it.

I would never again see a doctor that I know socially though. But around here everyone goes to see him--he is really very good at what he does. But seperating the professional and friendly relationship is sticky. That is why for now I am suggesting a "second opinion". I will probably even go out of the area if necessary.