***This turned out long. If you want to skip the story, jump to the bottom!***
I'm pretty tired right now so I'm not sure how much this is going to make sense. I'm also new to the group, and new to forums in general, HI.
I got my official diagnosis about 11 months ago, but the more I learn about symptoms, the more I stop and hear myself internally say, "Oh that? I've done/had that for YEARS." Sometimes I say it out loud.
I've carried around this scary word "diagnosis" for a year and I'd really rather just not talk about it. I've read too much in school about how people can essentially become their disease or disorder or whatever if they aren't careful. So I just ignored the word fibromyalgia. I go to my LCSW, and my psych, and PT. I haven't followed up with my rheumatologist in a while, but I finally got cleared from the sleep specialist to be on my own.
Two years ago I started grad school and started having problems worse than usual. I had no idea what the problem was because it really wasn't that different than what I had done in the undergrad program I had just graduated from a few months previously. But I had also gotten married and moved states. So NATURALLY, that's what everyone kept telling me the problem was. I was just this or that because there were so many changes all at once in my life. I felt like a child the way everyone was talking to me. NO, that's not the problem. I can handle change. What I didn't like was that instead of having a structured schedule of 5 days of classes, I only had 2 with a bunch of 3 or 4 hour classes. No breaks longer than an hour, most only 10 minutes to let us get coffee, sitting in uncomfortable chairs. I had developed (basically) 22 years worth of a system where I could take naps or adjust my schedule however I wanted. This whole cram everything in to 2 days was the only thing that stressed me out. Not the work load, not the reading, not the moving or the marriage, or anything else. I'm used to change, I've learned how to cope (though I didn't know what I was coping with).
So I ended up taking incompletes on almost my entire year of school, took an additional year off, and am now back. I'm still working part time.
I just feel like such a fake though! I've been browsing in here for the last few days and I see what other people post, and even though I feel like I've had times where the depression was crippling me, and times where the pain was, I just don't feel like it touches me as bad. I feel miserable most of the time, but like I said, even though I didn't know about fibro, I learned how to start coping with its symptoms when I was really young. It's the flares that scare me. It was the BIG one 2 years ago that caught my attention that I couldn't do it on my own anymore. But *still* I feel like a sissy compared to what I see other people in here going through. And I have no advice or words of comfort, and I SHOULD because I'm trying to become a social worker! It would probably help if I would come on here when I am a little more alert :) So I feel even worse having a pitty party over here!
I'm getting pretty nervous about school right now though. I thought coming back would be a lot easier than it has been. They've thrown a lot of unexpected changes at me at the last minute. Then I got really sick a couple weeks ago and missed an assignment. I'm backed up with reading because of complication of even getting access to some of the online material. It's been a nightmare. I got an email on Friday from my program director say that even though my professors say I'm doing well, I'm turning things in late from time to time so they want to set up a student support group. GREAT! Another thing that I have to fit in to my schedule in between work and school and appointments. All because I turned in something late when I was sick?! So I'm going to get baby sat because they think I'm going to fail again. I guess I appreciate that they're trying to keep me from falling through the cracks again, but I don't want to turning in a progress report every week like a child. I'm 24 and in grad school. Shouldn't that tell you something?
I just don't know what to do! I don't want to walk in with a bunch of excuses saying, "well I have fibro." I think they'll look at me cross-eyed and try to be empathetic but not have a clue what that has to do with late assignments. I've tried so hard to keep this from being part of my identity and now I feel like it's the only thing up my sleeve. I know they'll be understanding with me, but I don't know how far those limits stretch. They wouldn't be calling this tribunal on any other student. It's just because they know there's something wrong with me and I never actually told them what I found out in my year off.
***Sorry if this is a LOT of information for a discussion topic, but I just felt like I needed to give background information. I really just wanted to say: I feel like the representation of why so many people don't think fibro is real. Because people like me are REALLY good at hiding it. So good, that I don't know what I'm going to say to my Program Director and my adviser on Wednesday. Any advice?!***
Dear Staceylanae
What a pretty name! Do you use both names all the time? Or perhaps this is just your screen name. It's pretty all the same.
Stacey, don't apologize for a longer posting. That is just fine and it was necessary to explain what you mean by saying I feel like a fake. The problem I believe is that the university people do not understand about fibromyalgia. Nor could they unless they were afflicted with it. If you were explaining to someone who also has it and therefore understands what you're going through then you would be on a level playing field. The problem is that we don't look sick so that's why you have been trying to fake it. It's a really difficult position you are in. I'm trying to think what I might do in your situation. I think you have too much on your plate so you're on overload and university requires assignments and term papers each with a deadline. No room for a fibro flare! However you cannot avoid the flares. But I wonder if you could lessen your load........drop a course? cut back on work hours? The more you have on your plate the more stress you are under and stress ignites widespread debilitating pain. There is no putting pain on Hold. You just crash! Do you really need a graduate degree for a job placement? It sounds like you enjoy the social work, but the studying and working is just bogging you down.
I hope this has given you some food for thought.
Gentle hugs
Rachel
I struggled with that with my father. He felt like if I just got out there and exercised I would feel better because exercise cures everything. It cures a lot of things but I felt like my dad did not understand what I was going through. So I emailed him a link to some sites and asked him to read them please for me. It made a huge difference.
Andy
Stacey,
Don't apologize - fibro affects each of us differently and to varying degrees. I believe I lived with it for many years before it really became disabling. Now that it's been acknowledged as a "real" illness and there are diagnostic criteria, people are being diagnosed earlier. In my opinion this is a good thing. There are lifestyle changes you can make that may make it easier to cope with the pain and fatigue, and make the flares shorter. For example, I found a fibro specialist who tested me for underlying viruses and found I had Epstein-Barr and Parvo as well as vitamin D levels in the toilet. I've been on an antiviral medication ever since and started taking supplements including Vitamin D. My energy is better and I haven't had a bad flare up since. It's not a cure, but I've noticed some improvements.
As for people not getting it, you're always going to find that to be the case. People who don't have fibro don't know what it's like and how it effects everything we do. Have you been to the spoon theory website - www.butyoudontlooksick.com ?
You should check it out. Read Spoon Theory. Look at all the great resources on the website. It helped me. Especially the comebacks for when people make stupid comments. Hope this helps. We're here too to listen.
Hope this helps.
Nancy
This one's for Nancy, sorry but i have Epstein Barr and 2 other viruses but haven't yet found a docter who will give me the antiviral medicine. I was tested by a Naturopath who had me on supplements/herbs.
What antiviral are you on and is it generally covered by insurance? What sort of doctor tested you and prescribed the med?
I wondered wether an antiviral would help. How has it helped? Do you think its the drug or the supplements, what supplements did he recommend.
Thanks for your help.
Hi there,
as much as you won't want to slow down, you have to. Stress of deadlines, sitting in a chair for hours, working and school, it's a recipe for disaster. I don't mean to be harsh, but you're going to make yourself ill.
Your not a fake, you are obviously a very strong lady, with a great future in whatever you choose to do, but that future might have to come a little later and a little gentler. :)
Print out some info on Fibro and hand it to the people you have to meet with. Keep it simple and to the point. You have a condition that exhausts you and gives you all over pain, it may at times effect your deadlines. Let them suggest ways to help you.
Fibro isn't who you are and it isn't an excuse for anything, it is what you have and it's the reason you can't do certain things.
We all hide our fibro well but sometimes you just can't anymore. I didn't tell my new friends for about 6 months but now they know, some understand others don't but thats ok. I'm still me, whatever else happens.
Admitting you have an illness is not a weakness, coping and carrying on means you are stronger than most.
xoxo
I had a doctor like this, a pain management doctor who had no empathy or sympathy. I don't think this guy even knew what pain meant. Originally I'd gone to see him because of neck and back injuries that resulted from a car accident - and, I believe, began my battle with fibro. He absolutely believed me to be faking everything. Even though his nurse saw me a couple of times gimping around the supermarket, practically in tears, almost unable to make it up and down the aisles; even though my husband, also his patient, described how I couldn't barely get out of bed in the morning because of the pain in my hips and legs. Until I found my current doctor, he almost had me convinced that I was making it up - that even though a trip to the mall meant spending the rest of the day in bed or on the couch, somehow I was doing this to myself.
I wish more people realized that you don't have to 'look' different to feel this way. We may look like everyone else but there are bad days and there are worse days. Perhaps you can print out some of the info on fibro from well-respected sources like WebMD and Mayo Clinic to back-up your symptoms. If your doctor is good, maybe s/he can write a note (like school days!) to describe your symptoms and treatments... it's against HIPAA rules, but this may help your cause?
Hi and Welcome to the Group.
I agree with what several others mentioned about printing out some material from a recognizable source and showing it to the "disbelievers" when you encounter them. You sound like a bright person and this has probably helped you get to where you are despite the FMS. Yes, things are harder when you have fibro but it truly does serve to make you a stronger person. It does sound like you need to cut back a little, perhaps in the number of classes you take as was suggested. I plowed through to getting my Ph.D. in psychology but that was when I had more energy, my fibro. wasn't as bad, but following that period of time it did become worse. As someone who wants to help others, you natually watch and focus on others a great deal. However, you must be very careful of comparing yourself to others. You mentioned that you are feeling like a fake compared to others here. From what you described, you definitely sound like you belong. Don't automatically push the help others offer away. One characteristic a lot of fibromites have is an excessive drive to be independent and do everything by ourselves. Learn to live in your "energy envelope" as it is called. Relax and don't worry so much and you'll find you have more energy. Have you tried mindfulness meditation or any alternative techniques?
Greetings again and I hope to "see" you again soon. Hang in there.
Simone
Hi Stacy!
You are not alone - I can relate; in fact last nite I signed up for this site for exactly the same reason !! In a bad flare and am in the midst of getting my COTA degree. ( Licensing, certification) Feeling lots of pressure, huge deadlines and lots of rules/penalties for missing class. ( not like a "real" college)..... I've had this for 22 years and you've only had five to deal with it so do NOT feel like a "faker" please !! It's all relative - just like life. Sounds like you are pushing to the MAX and that's a sure recipe for a flare up.
I agree that you (we)- DO need emotional support - especially when going thru a painful flare and have alot of responsibilties that must be handled. Good for you to reach out to others. If you're like me - I have great family and a few close friends including a wonderful, loving boyfriend - but no one can really understand what I'm going thru. I've had it so bad that my husband left me soley because he was "sick" of me t So.. here's my 2 cents worth:
So let me say first of all - CONGRATULATOINS !! for getting accepted and for attempting to get your Master's. I also believe that YOU CAN AND WILL DO IT. You can and you deserve to do it. Obviously you have a big heart for helping others and with all we learn from Fibro - you'll be an even better therapist or case worker , etc.
I think you'll need to cut back where ever possible; like less working hours for example. I'm sure $$ is a factor but can you cut expenses at all? Get a roomate or even move back home til you get thru school and get a job? Yes, it's a hassle too - but could pay off big time.
Anything that is not necessary - cut it out. You can't do it all at the same time. Even "normal" people struggle with blending school and work. You probably know how important nutrition is and I am really into the best nutrition I can get my hands on. I buy Whey protein powder and another powdered supplement wtih EVERYThING in it.) I make smoothies with these every day; along with Magnesium Malate. That's been proven to be essential for energy ( Kreb's Cycle) and we don't typically have enough. Takes a few weeks to build back up.
Specifically for school help- I asked if my school had any support for students with disabilities. They actually had a coordinator for just that ! So, I got paperwork that asked me for what I wanted ( within reason but it was up to me to ask for it). I am requesting an ergonomic chair ( we have those horrible plastic one's too), extra break time, more time to complete tests and extra time for outside assignments. I also am asking for no penalty if I miss a class due to illness. ( they won't allow you to make up a test if you miss without an excuse like death in the family, court appearance or ER) Illness isn't a real reason.. ( we'll see how that flies!)
Yes, we must decide if we want to be singled out for special accomodations ( no one knows the diagnosis except the committee members and the coordinator in accordance with HIPPA) the instructor won't know but they must comply with the list they get that outlines the accomodations. I'm going to do it.. because passing these classes is more important to me than the opinion or gossip among the teachers/classmates.
I would be shocked if they didn't have that at your college. Would that be helpful? At least get a good chair!
Also - you could ask for more time to complete assignments to help with time managment and stress. I undrstand how that all fuels the fire of flare ups. Mental stress is almost worse than physical. So, I hope this helps. and I'd love to hear more about your school and life. I admire your perseverence and courage to go for it !
I'd do the exact same thing if I was your age again. and if I didn't mention it ... I WAS in a MSW Program when I got sick - but as I took a break for awhile to regain strength.. I got pregnant ( was married) and so My life took another direction. So - go for it while you can and don't let Anything get in the way!!
Peace & Blessings,
Shelly
please write back and let me know how you're doing!
staceylanae, none of us want to show our weaknesses, especially when we are young. When I was 20 getting my education degree, I had to have a total colectomy. It took a long time to get through it, but because I was an undergrad at a private school the university’s chaplain worked out everything. I went to two summer schools and graduated one summer behind.
Getting my 2 grad degrees weren’t as easy. I have always been sick. I went straight through but was sick a lot. I contacted each professor individually and gave them my story expecting nothing. If I could get a B and not take the exam, I settled. My body could not take it. I was liable as not to end up in the hospital. The professors always worked with me. I was working while I went through.
My fibro got bad during my last years teaching. I got 25 years in. I had to go on teacher disability until I got my SS disability came through.
I am so sorry you are so young. My health problems started when I was 3 months old. Good luck. It seems all I do is sleep now.
Hello Staceylanae -
A lot of folks have already said some of the same things I would probably say but I just wanted to add quick note about school and social work, etc. I got a Master's degree in psychology in 2000 and it led me to work as a Social Worker for the county, even though I am not licensed, that is my job title.
I should preface what I am about to say by telling you that I am not trying to scare you away from the profession by any means, only that I agree with the early post from Nancy in that you have to be able to set some boundaries and learn your limits and I think fully understand how demanding any type of school and social work position is going to be. There are a lot of different jobs that are considered 'social work' so what you are hoping to do may be very different from what I have been doing. However, I just thought it might be helpful to give you the perspective of someone who is already in the field of social work and trying to balance living with FM.
I love a lot of things about social work but one of the toughest realizations I have had to accept in the last year is that if I want to stay healthy, living with Fibro, I can't be the kind of Child Protection Social Worker that the county system (Minneapolis, MN - a HUGE system) expects me to be. 12 years ago when I started working for the county, I was a kicka** social worker. But Social Work was different then, and I was healthier. In the past 12 years it has become far more about documentation and making sure that the county gets reimbursed for every visit and it doesn't feel to me as much like the helping profession it used to be. My Supervisor tells people that the job is a minimum of 50% paperwork and 50% field work. I think it's closer to 60% paper, 40% field. One of the things I have struggled with most in the last two to three years (although I was just officially diagnosed in July of this year) is what I now know to be called "Fibro Fog." It has been really hard for me to stay organized, keep on top of time management issues and get through all the tasks I need to get done for each client, moving kids to and fro, supervising visits, taking kids to appointments, etc., especially case notes in the electronic system. I often feel like it takes me ten or twelve hours to do what it takes others only four or six to do, and I can't tell you the last time I felt caught up at work. If that isn't an issue for you, and the type of social work you want to do is different, or if you are able to find part-time social work, then your story will likely be different. For me, I finally took FMLA in early July this year because I just couldn't do it anymore and I didn't know what was wrong with me. A week later is when I got the diagnosis of FM.
I'm really NOT trying to scare you away from a career in social work. But as you go through school it might be important for you to take a close look at what kind of social work you want to do and how that type of work with affect your health. My doctor has recommended that I not return to Child Protection Social Work so I am now working with HR and the ADA Coordinator at the County to find another position that fits given the accommodations I am requesting.
As to the feeling like a "faker" - please! Girl, I am the queen of 'faking it til I make it!' or so I thought. I kept telling myself that if I just kept pushing on and working a little harder, staying at work a little later, etc., etc., I would get it all figured out and pulled together. I wasn't fooling anybody but myself. You may not be as REALLY good at hiding it as you think you are. Other people could see that I wasn't cutting it. We will all have times when we are feeling better or worse. Fortunately for you, right now you are feeling well. Don't feel bad about it, enjoy those days for what they are and appreciate them.
As far as what to say to your Program Director, I would look at Nancy's advice with regard to accommodations. She has some excellent ideas.
Good luck and keep us posted. I know my thoughts were kind of random, but I hope you got the main points. I'd be happy to chat more about social work.
Judy
Hi staceylanae
So young to struggle with this , let’s hope someone has a cure soon .
I’m older and it’s new problem but at least I’ve had healthy life . So dear I pray for you .
Hi Stacey and welcome,
I remember attending physician assistant school with terrible juvenile rheumatoid arthritis. Yes there were classes i missed and days i needed to leave in the middle of the day to see my doc for steroid injections. When it came time for rotations, i had to arrange for permission to skip any overnight on calls. You see, these diseases are part of us but not all of us. I have found through the years that fighting with myself over hiding my illnesses only took away precious energy that I could not afford.
There is no shame in having an illness in which we have not asked for or deserve. If there are ways to lighten the workload, than do it! You must respect your illness because it is a fragile, special part of you. I say this because I know first hand that having a chronic illness WILL make you a better social worker. It sure made me a better physician assistant. I worked for almost 10 years which is not bad considering I was born with the rheumatoid and was 37 when i retired. That is a long time for this frail little body to be hit with such an illness. But i will never regret the added sacrifices it took for me to work.
Hope this helps
Maria
Maria~ you said a lot of what I wanted to say, but were more succinct and well spoken about it. I absolutely agree that having chronic health issues will make you a better social worker. For me, having dealt with chronic pain and mental health issues really helped me a lot in my work with kids and families. Now having been diagnosed with Fibro and learning more about what that means for me and my life, I just have to find a good way to balance what I’m learning is good for my health and my great desire to be able help people and work with children and families. Stay strong and just learn to pace yourself and you should be able to do a lot.
God bless you StaceyLanae,
Judy ~ aka littlejld
Lanae is my middle name, thank you! But I don't use it all the time. Just whenever I feel like I want to use more than just "Stacey".
It was really difficult for me to get the University to make exceptions for me in the first place. My individual program has been pretty understanding, but the big hot-shot people have given me firm deadlines. I have 1 year to complete the work left over from 2010-2011 or they won't let me enroll for any more classes. So I'm pretty much caught between a rock and a hard place. I'm definitely trying to figure out how to lessen my load without dropping a class. I did get a lot of the coursework done my *first* first year, so there have been a few things I skipped. Hopefully I'll be able to use some bargaining chips and have them excuse a few assignments. Because really I finished more than I think they realized from this similar semester.
Unfortunately, every job I have any interest in requires an MSW, or even an LCSW. AND I eventually have to pay off student loans. Those do not care about medical illness as far as I know.
I'm sorry if this sounds like excuses. And I do *greatly* appreciate feedback. And I'm sorry for apologizing :)
Stacey
Thank you, Shelly!
I am glad that we can relate to one another! My husband has been really great, but I know it's been hard on him too. He doesn't always get it, but he tries. But that goes back to me not using the fibro label. I really think this will help. I was surprised to see so many responses. It's a mood lifter.
My husband and I can't exactly move because of school, actually. I have to finish my incomplete classes here within a certain deadline. And he's too far into his undergrad to transfer without it taking him longer to graduate. We want school to be O V E R so we can get Big-Kid jobs and start paying off (my) student loans and start building a future. BUT I really do hear what you're saying. Luckily, he was in the Navy for 5 years so he's going to school on the Post- 9/11 GI Bill. We started as out-of-state residents, so it doesn't cover everything for school, but this year we at least got what's called the Yellow Ribbon Program and a Pell Grant to cover everything else. This GI Bill also allows money each semester for books and for housing. HUGE help. His younger brother moved into our second bedroom a few months ago and pays just under a 1/3 of the rent. So we're actually allowed to pocket the extra money. My husband isn't working this semester because of a rigorous program he got accepted to that's just intense for this year. He does go to biolife and donates plasma and they pay. It's not a lot but if you go 2 or 3 times a week like he tries to, you can end up with $60 or more. Hey! That's groceries. Or my breaks that need fixing. Or tabs on his car that are expired. I can't cut back my hours because I work the minimum required to keep my health insurance. I applied for different social services but I'm just hoping they'll make some sort of magical exception! I'm not a registered student right now, but my husband is. AND, even though the GI money isn't taxable, they claim it as income. I just have to try and argue my case that between that and the one student loan I couldn't get deferred and medical bills, we really are sinking. It's hard: because I know if we cut back *too* far, then there's no self-care involved. Winter's coming up and it will make taking a "nice gentle walk" even harder.
I don't know what people will have to say about this: but I go through long periods sometimes where I just have no desire to eat, and then when I try I get bad tummy problems. I don't know if it's the fibro or the meds, but I just don't. So I started grabbing Slim Fast. *not* trying to lose weight (even though meds have made me gained a little) I just know I needed to put something nutritional in. I told my doctor and she got upset. Told me to drink Ensure instead. I tried it, and I wasn't getting as full and I thought I should. I showed her the labels and they had almost the exact values, calories etc, just the slim fast is bigger. So she approved it as long as I eat something else. But it does come and go in stages. I'm still in a "prefer not to eat" stage right now, but my husband is making me eat and it's not upsetting my stomach... yet.
We do have Disability Services for Students! My case worker, if that's what you call her is actually a graduate of the program. I know I need to get her back involved in the process, but considering the last time I talked to her she only wanted me to take one class at a time, I don't want her to think she was right. LOL. I was only supposed to take 3 classes this term then they switched the order of some things (research is usually taught in the fall which I completed, but they switched it with a history class from the spring which I did not) so now I have 4 classes. I had originally thought 3 classes? No big deal. Especially since the 3rd was the once I got the most work done in. Then they switched the professor last minute. The new one doesn't use any of the same assignments so it's almost as if the work I had done vanished. I need to get that straightened out. ANYWAY, I've just been putting off talking to DSS because she'll try to convince me to make this process take longer. I DO want to push through school. I was supposed to graduate last May. This is a 2 year program and I don't want it to take 4 more years. I want to start my career. I want to HAVE KIDS and not still be working on my degree. I need to be full-time to get the financial aid that I need. UGH.
So, I'm hoping that if I get *her* involved, she'll just help me get what I want instead of trying to convince me what she thinks is best? I think I've said before, but even if I can get the school to make all the accommodations in the world (including financial... because they want to charge me again if I don't finish old course work by next August) I *definitely* have limits on how many years I can defer my student loans based on income.
I worry that because there are so many assignments that if I ask for extra time, I'll just end up having a ton of assignments due at the same time, or I'll go into the next semester with unfinished work. Because that's what happened to me last time and I got too overwhelmed to finish. I'm scared to let that happen to myself again and I think that may be why they're calling me in so early this time.
It's also just so frustrating because I got to know my old cohort then mysteriously didn't show back up to classes the next fall. I made stages of announcements online, but no one really knew the full story about how behind I was. When they asked how many assignments I needed to finish, I said, Try whole classes. They had no idea. There are other people that were only part-time students that are finishing their 3rd year that I'm just now seeing again for the first time and they look at me like they just saw a dead person come alive! In a good way :) Then I get to explain why they never saw me again. It's even more nerve wracking because I've had to figure out when, where, if, what to tell my new class. Because they will obviously eventually figure out that I've taken these classes before. The professors keep making comments that they know me, or say things like, "Well Stacey, you've done this before...."
One of my professors who I actually really admire tore me down to tears the first 2 weeks. The very first day of class I couldn't get access to the online material so I asked him to email me the article he wanted us to read. He said no, get it from a classmate (I didn't know anyone yet and didn't want them to know why I couldn't get it for myself online). Then he said I wasn't trying hard enough for my education. I turned him in for that. Then on the second week, and I honestly think he didn't mean to do this, he was talking to a group of us during break about an addictions class he teaches. Then he asked if I took that one from him. Remember: I haven't told anyone I'm repeating yet. I stuttered no, I took psychopathology. He said, oh really, I don't remember. I said, yeah that's because I didn't finish. Then he went on to say how that's strange because he never let's people take an incomplete grade unless someone's really twisting their arm. Then he said, "Oh wait, yours was medical related. I remember now." In front of people I'm trying really hard to get to know; trying to figure out how to tell myself. A little at a time. NOW, 5 weeks in I'm pretty much just out with it. I don't really say why, just that this is the second time I've started the program.
Ramble ramble...
I had been thinking about a comfy chair... but I get uncomfortable in everything! I usually just sit in the front, but at the side of the classroom. That way I can stand when I get antsy or lean against a wall. I find I just need to switch it up a lot in long classes. Some times I just sit on the table. Though it would be nice to have that down in writing! There's a handicapped woman in my class and even though she doesn't always take advantage of the special chairs that are there, I would feel bad taking them in front of the whole class when here disability is visible. So it would be cool if we could get 2 in every room :)
School is stressful. Ugh, but I love school. Can we have school without deadlines? I just want to learn and talk about things!!
Okay, there's my obnoxiously long response. Now tell me yours!
-Stacey
I thought exercise would work at first too because I used to be an athlete. I always thought the pain was because of that and I was in much better shape. Take me out of the pool for a couple years and now my body doesn't know how to respond any more. I feel like I completely broke it down!
That's awesome that emailing the links had a positive outcome for you!
-Stacey
Wow, Nancy!
That is a really awesome story. I don't think I'm ever going to look at a spoon the same way again. Just... wow.
I'm really glad that I am in school with social workers. They at least try to be super empathetic. Even at work, they were the first people I told because I had to work the evening after I got diagnosed. And they all knew I had a big doctor's appointment I had been waiting months for.
That just really made sense for me. And I think the people in my life that are already supportive would understand me a lot better for it, too. Thanks,
-Stacey
I agree. I could have hidden my ileostomy and B12 deficiency, but I couldn’t. How could I explain the ER visits, missed classes, work, etc.? It is best to be upfront Fibrokitty as you say.
Oh I totally understand!
Some people get really down on me for my social life being social media. If I didn't have facebook I wouldn't have friends! I have huge anxiety over phones, but I can text, but I'd really rather just keep up at my leisure.
I do want so badly to be in a different body! My doctor told me it's not degenerative, but debilitating I'm not sure if she was trying to make me feel better or not. Oh, and I have benign joint hyper-mobility syndrome also. Basically I should have stopped being this flexible when I passed puberty. Mix that with fibro pain.......
I know what you mean about new friends. That's exactly how I feel about my new classmates. I really want to make a bond with them. But I'm afraid. What if all they want to do is stuff I don't feel comfortable saying yes to? Last week I took the free shuttle when I usually try to find a spot near the campus. But I was late, so that was easier. The last shuttle runs *right* at the end of class so I was lucky to make it or it would have been ~1.5 mile walk. There were a couple others from my class that were on the shuttle too and we were talking. They are a lot older than me, but said how they usually walk back after class, but since we were all going out to a brewery after this big test we had they thought they should get back faster. I kind of quipped how I wish I could still walk that far without my back hurting so bad and they just looked at me like I'm crazy because of how young I am. So I took a big chance and explained that I have fibro. One of them kind of knew, but not really. I got the "but there are pills, right?" They really had best intentions and seemed so concerned. So I did my best to explain and for such a short bus ride, I got out as much as I felt comfortable. But I think it made things a lot better even in that short explanation period. It helped build trust. We'll see how thinks keep going when I see them again this week :)
-Stacey