Hate my life

[MakinIT]

Hate to start off with such a strong headline but it is how I feel. I try to come back and every time I turn around something smacks me down. I am SO DAMN bored, in pain, tired of being around a grumpy father in law, no color in my house (my husband will buy beautiful expensive prints/framed and matted for his classroom and office at home and finds it a waste to color the the drab walls) I can't drive. I broke down last night when I found out he and my oldest had been planning a trip to ITALY for two years for her 16th birthday. ITALY...my god...I've ALWAYS wanted to go there. HE knows that. the history, the magic. But I'm not angry at him or the situation..he swears he told me but he didn't cause I woulda remembered...he's just a space head. I Know I cannot fly that far. I also know that I would be way too fatigued to appreciate anything and would sleep. I won't deny my daughter this. All kids should see this. So...the crux is my husband and I have a very distant relationship and I basically broke down in front of him (I never do) and paced, back and forth and bawled about how I have nothing to look forward to, nothing to see but just the same crap everyday, EVERYDAY!!! I can't take it. For the first time in a long time as I sat on the bed, he sat behind me and held me. He also asked how far my circle of plane rides could be...I said I really didn't know. It depended on how I could fanagle the damn cart in the aisle...I'd have to try to get a seat in the back and make sure the staff know I HAVE to get to the bathroom. (ANY SUGGESTIONS would be appreciated.) He wants to take me to a conference in Scotland. I do have a shrink....I've been doing ok b/c I've had some things on my plate but those have dissolved. (NO time to get into it)

Please reply...I need help...I haven't written in a while but I have VERY severe IC haven't worked in 3 years, was a special ed. teacher and damn good at it. Want to set up a tutoring business to also help parents but afraid my long term disability will get a wiff and cut me off. ( MY SS is still in the works...AAAARRRGG) I am on intense meds...(high level morphine daily, breakthrough drugs, nerve meds...other stuff...valium...helps me physically but I'm still a wreck.)

Gotta go

[ICNDonna]

My suggestion would be to go to that conference in Scotland --- You could rent a motorized wheelchair if walking is tough for you. That way you would at least see something different. And some adult diapers could help you feel more secure on the plane --- wear a loose skirt (very stylish right now) to make it easier for you. You might even find you really enjoy getting out.

And, if nothing else, get some colorful posters for your house.

Donna

[Sarojini]

I advise you to go too! The Poise pads or Depends on the plane are a good idea; I fly for business sometimes and I find they ease my mind so that I can get through the flight. I also always request an aisle seat and if possible, one near the bathroom. I've also pulled stewardesses aside, shown them my IC restroom access card, explained briefly the problem, and was allowed to use the bathroom when needed.

As for your meds, just keep them in their original containers when you fly, and if possible, also carry a note from your doctor saying why you need them in the event international customs finds them. They will not take them away if you have this info.

And, don't eat plane food (eeww).. pack your own snacks and water in your carry-on bag so you know exactly what's in what you are eating.

[poetgirl]

Donna has great suggestions. And I think it would make you feel more confident if you were able to travel, so that you could get out and spend time doing something more enjoyable. You're disabled, but that doesn't mean you should remain trapped in your (drab) house. Maybe if the Scotland trip goes well enough, you can also go to Italy. You might want to inquire about tours that accommodate disabled people. It's worth a shot! :)

And, yes you can request a seat on a plane that is near the lavatory (does not have to be in the back if it is a large jet -- usually there are lavatories in the galleys in the middle of the plane.) I know others have posted tips on how to fly comfortably with IC. Frankly, if you can afford it, fly business class. The seats are more spacious and recline further back.

[angelaharrell]

You know what, make some colorful posters for your house. Get some canvas, some paint, a few brushes and bang you got yourself a new hobby! You can rent "how to" videos for free from your local library that could help you learn to paint.

My hobbies are scrapbooking and photography. My hobby room is next to the bathroom!

Go to Scotland, enjoy it. Stress adds to IC on so many levels, you need to get out more and experience the fun part of life. I promise this will help you feel better. Great suggestions from ICNDonna. It's really easy to get a seat by the potty, they will actually ask you on the phone for special needs or requests. You can even get an IC friendly meal on the flight if you ask in advance. Make sure that you take an analgesic and drink lots of water on your flight. You can bring a pillow with you or ask for one from the attendant and place it under the upper part of your thighs ask it will releive some of the pressure from your bladder. Lean back and relax for most of the way there and definately rent a motorized wheelchair to get you through the airport or even around Scotland. Plan your adventures and limit yourself to sightseeing. Get lots of rest at night and don't eat or drink anything aggervating to IC.

As far as teaching, I don't think you are mentally or physcially in that place yet. Take care of yourself first. Good luck and have fun in Scotland!

[Ginny]

I agree with the others. Watch your diet carefully before going. That's important if going on a plane. It will help you to not have to go every 5 minutes.

I know you don't feel up to it but when you do I would start thinking about doing some painting to brighten up those walls. A little at a time. I know it seems impossible now but once you set your mind to it and do a little at a time you might find the energy.

Ginny

[SheriG]

Your post caught my eye, cuz for a minute, when I first read the title, I had to think back and try to remember if I had written it. I can empathize w/ you hun. Life can deal us the most unkind of hands at the very worst possible times. It sometimes feels like noone else could possibly understand how bad we can and do feel on so many days.
I feel that going on the Scotland trip would be great...just a few suggestions before you go... Get a card from the IC store that states that you have IC and need immediate access to the potty whenever you need to go. Next, talk w/ someone at the airline that you plan to travel on. Explain your situation, and be sure that they are willing to accomodate your needs (get the name and rank of the person you spoke with, write it down, and bring it with you on your trip.) While in Scotland, a wheelchair, or motorized cart would probably be very helpful. Consider some "desparate measures" purchases. The IC store carries a few different products for us to keep in our possesion for times when you need a bathroom RIGHT NOW!!!I swear by the travel johns. I was skeptical when I bought them, but they work really well, and are easy to use and dispose of quickly and quietly. Once you have decided to go, try to RELAX!!!!! Tell yourself that all will be well, and that you will do what you can, and won't do what you can't. Make sure hubby is ok with this as well. Bring a good book, and/or magazines. If you opt to stay behind for a day cuz you are tired or in pain, don't worry....curl up w/ some good reading and enjoy the different scenery!
I wish you all the best, and I so hope you will be able to take that trip to Scotland. If you ever need to talk, vent...feel free to PM me at any time! :grouphug: Sheri G

[MakinIT]

thanks for the suggestions...I've already had the depends discussion (not fun) with a paratransit bus driver system...IE...I just can't pee no matter how hard I have to go. I wind up in spasms having to cath myself. (Don't even ask me about that conversation...it was UGLY) . In Scotland, I think I'll be ok, I shouldn't have to get a chair, much more leisurely...it was the Italy trip. My husband and NEVER had a honeymoon. We never had the damn money. He's taking my dream vacation with my daughter...I've always wanted to stand in the places where others from centuries past have stood, gaze at the marvel of the Sistene chapel and other marvels of art. Go to the countryside, Spend time in the old city of Rome, my God...why can't I go. Scotland will be beautiful. I'm just angry. At my daughter's age, I had the chance to tour Europe with a well supervised Senior trip. I saved half the money for the trip, through blood, sweat, and tears. I asked for the other half and they laughed and said no. (they had the money) So...here I am....Everytime I try to pick myself I get slammed down. I don't know if I can do it much more.

Tracey

[MakinIT]

Oh...and I bought a print today...I didn't care...

[Cali girl]

I would definately say go on the trip. As the others brought up, there are so many things that can make your trip better. Don't let this opportunity pass you by. Go and enjoy yourself. But take it easy too. Go on the Italy trip too. You can get a wheelchair or a scooter if you need too. Map out the trip so you give your self time to rest. Check with the hotel that you will be staying at to make sure that they have an elevator to take you to your floor. I know that seems weird to ask but not all of them do. Pack a bunch of snacks and even bottled water. Talk to a tour agency about if they can plan a trip for you that will be easier on you.

[traceann]

Hmmm, must be the "E-Y's" in our names that make us both long to see Italy! And let me tell you, Scotland is also right up there for me! The "romance" of the castles and the beautiful country sides, oh my gosh. I also want to see Ireland. I went as far to plan a dream trip to Ireland for myself to go to a culinary school, named Ballymaloe, they had like 8 week classes -- very laid back, with "cottage dormitorys" you could board in if you wanted etc. oh, it was an awesome idea. Someday I say! Come hell or highwater, I am making it to Europe! LOL

Why can't you shoot for that Italy trip as well? It's the same prep, etc. Just a thought, I would hate to think you'd have to miss that when they are going. I have always dreamed of Italy myself, just ask SandyRN, we had our dream trip to Tuscany all planned out!!!

Glad to hear you bougth a print too, way to go girl!!!!!

Hugs!!!

[dg2901]

I traveled a few months ago and was extremely worried about the bathroom situation (isnt that was ALL of us think about ALL the time???). I had no problems whatsoever re: bathroom(s). We flew from the East Coast to Nevada with one stop inbetween. All the planes had atleast 4 bathrooms--the long leg of the flight, the plane(s) had 7 bathrooms. Never once did I feel I had to worry about having access. I made sure to void as close to boarding as possible, then again once the place got to cruising altitude, then again right before landing. I also made it a habit to void, once at our destination, when I thought there'd be more than an hour or two between the next opportunity (ie-should we be traveling on a bus/taxi and possibly get stuck in traffic, etc)..........Like others said, make it known that you have a medical problem that requires immediate and frequent bathroom visits; you dont have to go into detail unless you choose to. The suggestion of getting a written note from the proscribing physician re: your medications is an excellent idea, just incase you get questioned at customs.
Theres no way I'd miss a trip to Europe if it was at all doable; I feel you can make this a great vacation/getaway/and belated honeymoon. I say go for it.

Enjoy and (if you do go) make sure to take the camera and post the pictures.

stay well and happy traveling
diana