I have classes starting Wednesday and don't know how in the world I will be able to handle it all. The building where the classes are has three floors. My classes are on the third floor. Sure, there is an elevator, but everyone runs and crams themselves in there. I can't run ... sometimes can't walk. The first month or so the parking is non-existent, so I know I will have to park a long ways off and walk forever to get to the building.
I have been in pain every single day since May. I have had maybe four days or so overall where I felt half decent. I always read posts on here where people talk about flare-ups. I must be in a constant flare-up. I take meds, but I often wonder how I would feel if I didn't take them. I feel bad enough with them! I feel like I am constantly bathing myself in some type of arthritis cream to no avail.
I just don't know.....I apologize for venting, but I want to continue my education and feel like fibro is not going to let me. I'm scared of what will happen Wednesday.
Here I am at 9 still lying on the couch in pain....how am I going to do this?
Well, I did it having two surgeries for ulcerative colitis ending with an ileostomy and total colectomy. I was plagued with dehydration. I just knew I had to do it. I was in and out of the hospital, but I kept my eye on the prize. I had hardly any energy and cried a lot.
My professors worked with me when I explained things to them. I graduated one semester behind my class, and I was fine with that.
HOWEVER, my surgeries and disease can sometimes be perceived differently than someone with fibro. Explain that to your professor or boss, and you may not get the same understanding. I would go in prepared with literature on the disease. Now that I have fibro drs look at me a little differently, but I still have a multitude of incurable diseases so I am taken seriously.
Susan H, I hope you are able to finish your education. I went back later and got 2 masters and an add on undergrad minor. It just about killed me, but I had to prove to myself I could do it.
If you can’t do it; you can’t. Plain and simple. However, I would be looking for better parking and elevator usage. You need a handicap tag.
Is there handicap parking at your College? If so I would discuss with your doctor the need to be able to park as close to the building as possible as he must authorize the handicap sticker for your car.
If there is an elevator in your College and your classes are on the third floor then somehow it is mandatory that you be able to use the elevator. Use of the elevator is mandatory for you. Now, how is this going to be possible? You also mentioned that walking is also difficult for you so I wondered if you could rent a wheelchair? For safety reasons you would have to take the wheelchair home with you after classes and bring it back in the morning. Make sure that the wheelchair will fit in the trunk of your car or in the backseat. Manual wheelchairs must be moved with your hands so you would have to pratice using it at home to get used to it. But that doesn't guarantee a space for you in the elevator. If you could "friend" a person in your class who would wheel you to the elevator in return for carrying her/his books on your lap then you should/might be able to get there in time.
My heart breaks for you, I fully understand your pain. I have also been in an endless flare-up, I was taking many meds with no relief. I just stopped taking them recently and feel the same. I was unable to finish my degree, like you far too much pain to walk, couldn't concentrate through the pain. At least you can vent. I keep fearing losing my job, I have been having such a bad time keeping up.
Hang in there, search for the best Doctor, that is what I am doing. I will not give up !
I know exactly how you feel. It's scary but it most definitely can be done. I went back for my Masters but I did it online. I was able to just log in when I was feeling okay. As long as the work was done by the deadline, it didn't matter when you logged in. Good luck. I feel your pain.
My whole life has been one big flare-up. I'm sick of it. I just don't know what to do anymore. I'm tired of being in pain AND it's not in my head, it's all over my body. There is no part of me that doesn't hurt. I went back to school to prove something to myself; however, I now can't get a job--even with an MBA in hand. Even if I was hired somewhere, I'm not sure I could physically could work since I'm in so much pain.
You go on because you just have to. I had to figure out some new ways to do things. I also had to go totally gluten free to get rid of my pain. For some that does not work.
Sometimes I have to move the dogs lease attachment from where it stops her from pulling to where she pulls like heck cause its the only way I can take her on her 2 o'clock walk. I look dumb because I found that when I cant walk I can attach her leash to a fanny pack and she gets me around the block. Point is we have to be creative. We have to just admit that there are some things we cannot do. Walking up one flight of steps I can do. walking up three no way. Get a doctors not and talk to the school. Maybe you can have next semesters classes all on the first floor. Please do not be afraid to ask. All they can say is no. But I am sure with the disabilities act they may just help you. Even when I went to school 30 years ago, We had a blind gal that always seemed to have class on the first floor of a building, near the door. I know there was one semester where she had two classes one after another in the same room.
Take your basics online. English, history pretty much the first to years of school.
Talk to your teacher. Maybe she will let you come to class a few seconds late. With fibro you cannot push your way on a crowed elevator.
Good luck with what ever you try and it is great that you are pushing though and going to school.
Hi Susan, that is the way I used to feel while working. I used up too many sick days, well the ending is I had to retire. All I can tell you is what I know about the flare-ups. If you get stressed or upset, or don't sleep well the night before is when those happen. Take your meds before (if possible) and try to keep on going. Is there a way that you can explain to your teachers what your problem is? Most of the time they tend to give you a little bit more slack if you just be honest with them. Give them a note from your doctor and tell the teachers that your education is very important to you and you are trying your best. I stayed on my job for 6 years doing just that until I finally had to retire. Good luck to you, but be honest with them I think that is your best bet. Gentle hugs, Tawnycat
Thank you all! I didn't think about the disability placard or telling my professors about my illness. However, i did just order a rolling backpack. My body doesn't need extra weight hanging off of it. Sooo glad I joined this group! I keep on pushing, but pushing isn't the answer. Need to take my time, but my mind is having a hard time understanding that!
Dear Susan, I can relate to starting next semester at school with 14 credit hours I'm really scared but have a disability counselor at school that I'm in very close contact with. I use extra self care and support from my friends, family, congregation, and health care providers. Since I started Cymbalta two weeks ago I feel pretty much pain free the past 4 days. But now I have another problem which is SSDI cut off my benefits due to their error and now I'm facing eviction and have been working with my Congressman's office, an attorney, plus hopefully I can put myself on the housing lottery tomorrow and if it's not paid by january 15th we go to court. I might be able to stay where I did my internship at in the staff's room. I just am so sick of everything at this point! I am also being charged by my landlord $76 a day until the rent is paid but then I won't have enough money or money at all to pay the rest of my bills since my bank is charging me for overdraft fees of $32:50 for each transaction with insufficient funds. It's very tiring for me and I just need some time to decompress after last semester but that's not going to happen right now. I do alot of advocacy work for alot of people but now is the time to focus on myself as well and 1st and foremost. I have two semesters to go before I finish my Associates Degree and I am on the dean's list so I don't want to drop out of school. But I just have to pace myself and get adjusted to taking night classes and going to school Mon - Fri and also having an online class which I am not to happy about. I have until January 22nd to fix all of these things before I return to school. Wish me luck. Thanks
I admire your ambition, and courage! My first thought about the parking problem is to ask if someone could drop you and pick you up? If this is at all possible it would eliminate one huge factor. Applying for handicap parking is another idea, I know we don't want them, but they are a life saver.
My husband has had bad knees since Vietnam, from jumping out of helicoptors with huge packs on his back, so the wheelchair tags are for him, but so important to me.
I know, getting into a crammed elevator never gave me any good feelings either! Would getting there a bit earlier help that?
Don't apologize for venting about all of this, your situation is very real, and my solutions may not seem very practical, but I wanted to respond to you. I hope that you can find ways to make this as 'possible' as you can, and I am pleased that you are going for it!
Do all you can for yourself, you are heading in the right direction. We are all here to be your cheerleaders!
One More Mile nailed it, "You go on because you just have to. I had to figure out some new ways to do things." Most mornings my body can barely move, but I learn to make it. I keep up with my doctors continue to rule out other issues, and try different treatment options for the diagnoses I know I have.
I try to remember why I'm doing what I'm doing, and what I lose by giving up. I do what I can to not let illness completely take over my life. I need to remember what I'm living for and what's worth living for. Pain can make those things hard to see, but if I lose site of them, I let the pain take everything that matters to me.
Also be careful, fear can easily become a self fulfilling prophecy. I wake up each morning expecting things to be better, when I feel like I can't, I tell myself I can.
With the stairs it sounds like waiting for the elevator is worth it. Seeing about a parking pass seems like a good idea.
Disability services may be able to provide some accommodations, all schools per the ADA have to provide some if the proper documentation from a doctor is provided. I had severe depression while getting my MA, and without disability services I would have had to drop out. However, I still had to find ways to be creative, pull through and do the work.
Hi Susan - I am SO sorry about the pain you are in. When pain occurs that lasts a long time, it is so tiring and awfully painful. I hurt everyday too. Never a dull moment with Fibro!! Please don't stop taking your meds! I promise you, you will feel much worse. Maybe the meds don't help too much - but at least maybe you get some relief? Hey, its okay to vent and whatever you 'throw' our way, we are all here to help you.
I commend you for wanting to continue your education. You are faced with a real challenge here with your FIbro and having to navigate around the school. I don't know what to tell you, really, about how you are going to get around. Can you do online classes for the subjects you have chosen? Do you have a handicap sticker that you can use, in order to take advantage for parking close to the school? I feel badly that I can't think of ways to help you get around the school easier. Being that your classes are on the third floor, will be a real challenge for you. Can you explain to a school counselor what is going on with you? Maybe they can come up with a solution to help you get around the school? I am sure the school has dealt with physically and mentally challenged people before. There is no reason to be scared Susan. I am sure you will be able to reach out to someone who will gladly help. Most times, we have to work 'around' the FIbro. You are in a situation that you are not able to do this concernng your classes. Having constant pain makes it all the more difficult to concentrate as well. I don't know whether any of my suggestions have helped. If I was in your situation, I wouldn't really know what to do etiher. Do you think a cane or a walker would help you? I have a walker and I use it once in a while. It also has a basket attached to it so that I can put things in it that otherwise I wouldn't be able to carry in my arms. I refused the walker for a long time, because it made me feel 'old,' But when I am in situations where a walker needs to be used, I get around perfectly. Also you will be relieving the pressure on your hips, if you have constant pain there. I do. Please keep me posted on what is going on with you? I am most anxious for you to be able to get around the school with as little pain as possible! Hopefully other people on this website will offer suggestions as well. A BIG gentle hug for you, Susan! Laurie
My fb is constant I very seldom get any relief. My flare ups r when my normal pain goes from being able to move around to doing nothing. Im unable to work because I dont no if ill even be able to get out of bed or if iv been able to sleep at all. I commend u for going to school I would love to just be able to do anything on a regular basis. But with my fb iI just have to wait to c how im feeling that day. I give u one big soft hug. Hang in there.
I can walk, but its sorta funny looking. I weeble and wobble and have to hold onto things. I thought about a cane, but I don't know how well a cane would do with my legs crossing over and losing balance. I will not YET go to a walker. I mean, if I have to I will, but I am just getting to the point I can accept I may need a cane. Tired of the pain and the wobbling. Ughh!
Hi Susan - I understand about the 'weeble and wobble' walking. This is the way I walk most of the time. On those rare good days. I can walk fairly decent. I, personally, can't use a cane because I don't feel secure at all. It males me feel more insecure about my walking. There is much more support, for me, using a walker. With a cane, I worry about it coming out from under me - which I have seen happen - and down I go. My legs cross over all the time and when they do, I start to stumble and I reach out for the nearest furniture or wall.
Canes are usually used (as far as I've seen) for people who have just one side of them that's bothering them.Fibro seem to have both hips hurting at the same time, like mine today. A cane just wouldn't do me any good. Please keep all of us posted as we want to be sure you will be okay? Laurie
I had many days like this when I was in school. I had to take a cab a few times because I couldn't drive, which is too expensive to depend on all the time, but it got me through a few days during the school year. I sometimes would sit at the back of the class near a electric plug with my heating pad, and would alternate with my ice pack that was wrapped up in a towel. I just said when people would look at me strangely " I am having back problems" which was true because with fibro everything hurts. Almost everyone could relate to back problems so they didn't think twice about what I was doing with the heat and ice. I also had to lay my head down on the desk during a few classes. "It is important to let your professor know so he or she doesn't think your bored with his lecture". I also had to use a wheelchair a few times to make it to an activity.
Fibro is so difficult to understand because the next week you might find me running around the block before a big test to help me think clearer to take the test. I have learned it is what it is and if I feel bad emotionally about it, it doesn't help and just makes me feel worse so I try and stay in the moment and not think about tomorrow.
Today I have been in bed for two days in pain and weakness, and then all of a sudden I felt like getting up, so I took advantage of the moment and went outside and walked. I wouldn't wish this disease on my worst enemy but just like everyone else I only have to get through the next moment. Venting is good sometimes. Thanks for letting me vent also.