Feeling overwhelmed. . .need advice? Support? Thoughts?

Support
1

Hi all. . .

Well. . .I am a "I can't stop" kind of girl but that may be a tune of the past. 8 yrs diagnosed and I have not let anything STOP me from living except now. My new job that I have been at for about 3 months has taken its toll out on my body. I am a housekeeping supervisor and I house keep on the weekdays. . .during housekeeping I am moving form room to room pushing that big cart and bending and standing for 6-8 hours straight. . .then on sat & sun I am running down 5 flights of stairs. My job is to inspect each room that they attendants clean before they can be entered into the system to be sold, so I am checking no less than 60 rooms a day, bending, standing, walking, bending. . walking, walking. . .my body is taking a beating. My arms hurt, my legs, my skin has become far much more fragile to touch than it used to be. I am drained and feeling defeated. Not once have I let this stupid condition hinder me but I see no other option than to quit, soon. I told my boss that I need to eliminate the housekeeping part of my job and just stick with the supervising as it is only two days a week but still I am just done for.

I know I should not feel this way but I do feel quite defeated. Class isn't so extreme right now but in the fall it will be and I refuse to let anything hinder my education, again so I have to stay on task. This job is the problem . . .I am scared to quit. I am scared to be without income and a means to support my son and I. I do not know what to do. I can look for another job but I just want to stop and lay down and curl up in a corner and sleep for weeks. . hibernate like bears. Everything is getting worse and I do not know what to effing do. I do know that I am getting worse. My body is going into shut down mode and If I do not make some kind of change, I will hurt myself for a very long time but what do I change? Drop out of school, AGAIN and work. . . .no. Quit working and stay in school? possibly. I will not get on meds again. . .I had some flexiril in the cabinet so I took two last night. The most meds I have taken in months. . .had no effect, I am just in too much pain to feel anything right now. . .

I js need advice, thoughts, support. I am in this journey alone and no one understands the level of pain I go through, no one believes it, but you do and I than you all for being a ear for me to rant to . . .

_Mo_

2

Dear Mo

I have just read your posting. At this moment I don't have any suggestions, but I most certainly support you. I hear the anxiety at having to make a decision soon. And I feel the overall debilitating pain and the fact that you have pushed yourself beyond your limits for too long and realise that your body is soon going to shut down on you.

Just hold on. I am praying for you. Let God hold you and carry you right now when you feel too weak to walk beside Him.

I had something personally devastating happen to me today and I am holding on to Jesus' promise that He has a plan for the lives of each one of us and it is to prosper us. I am so glad I have Jesus in my life for without Him I would not be able to survive. He won't allow you to fail.

Gentle hugs

Rachel

3

"I can look for another job but I just want to stop and lay down and curl up in a corner and sleep for weeks. . hibernate like bears. Everything is getting worse and I do not know what to effing do."

Hi MoMerrell! Your post concerns me very much because I used to be an Activity Director and had to constantly push people (sometimes as heavy as 400 lbs) in wheelchairs, plus constantly push around heavy tables, plus also do tons of bending, pushing, lifting, standing, stairs, etc., that you do. And it made me much much worse! I wish I had never taken the job. Now I'm hearing virtually the same thing coming from your mouth and it worries me. I am going to strongly encourage you to QUIT the housekeeping part of your job ASAP. My body has never been the same since then and I was bedridden from the pain and fatigue for a long, long time. I knew before I took the job that it was a bad idea (already was suffering from the back pain) but needed it, due to the recession. The job added elbow and knee pain, plus fingers, plus the rest of the back. Plus made my lower back feel so bad that at times I truly felt I would die. Please, PLEASE don't let yourself get to this point! NO job is worth it. The money that I made means little now, since I was unemployed for so long after I "crashed" due to the pain and fatigue. The words you speak about just wanting to curl up and hibernate - EXACTLY how I felt! I had NO energy to even go on after awhile. I am SO concerned for you!

You are pushing your body beyond its limits and it is warning you very strongly that it is a bad idea.

I just read a science research paper that states that people with fibro actually have (temporary?) changes in certain genes after doing even moderate exercise, and the changes show up for days afterwards. Now imagine what heavy duty exercise is doing to your poor genes!

If I can spare you the worst of the pain that I went through due to my job then at least I'll feel that the knowledge I gained from my suffering has done some good for someone else.

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Hi I don't have the answer either I also have a physically demanding job and am very fortunate to have a very understanding boss and staff I take it one day at a time you're in my thoughts and prayers all of you my fibrofamily

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Hi Mo,

I posted some things for you before you got here, not knowing what you are doing for a living, but I worked in the Hospitality industry for years as a Bartender, Night Club/ Dinner Club manager, Beach Bar, before finally going into sales.

I know what those carts are, and I know the kind of work you do, the messes you clean up, the physical labor, and the ever changing staff you are trying to train and supervise, 365 days a year.

When I worked the Beach bar, I had a housekeeping cart I used to load and unload cash register, crates of liquor, cases of beer, from the 8th floor to the edge of the Gulf of Mexico and back, not nearly as much pushing as you, but I know, and I know about the concrete floors you are on, carpet or not, it's concrete! Same with sales, concrete.

I have a pretty good idea just how strong you are, I know your type, I am one.

My sincerest advice to you is to get the very best Rheumatologist you can find, now since we have all jumped on the 'Denial' post, and in turn, jumped into reality, I am going to shoot it straight, the way I see it, cuz that is how you tell it Mo, straight.

A Rheumatologist is a highly trained Specialist, usually also an Internist, who deals strictly with Autoimmune diseases, I have made it clear that it is my belief that having Fibro is standing in the hallway leading to Autoimmune or just undiagnosed Autoimmune.

My Rheum, also an Internist, also a University Professor, defined FMS as a condition, not a disease, and went on to explain, as a Scientist, that if you take a lab monkey, injure it's left hand severly, do not treat it, the severe pain becomes chronic. This chronic pain changes the brain, that changes the body's perception of pain, and soon every single place on the body that you touch this lab animal causes him the same severe pain. You have to find the CAUSE of the pain in order to treat the Fibro. It is NOT a coincidence an Autoimmune doctor is the guy to have!

I was rear ended in a car accident, not a very bad one, but bad enough that I could not get over it. I went to every imaginable Doctor, to teaching hospitals of the highest caliber, looking for a diagnosis, even entertained ideas of a quick fix. There aren't any. Once you find the Rheumatologist, you are on your way! It can be a hard road to get there, so get going.

There are wonderful Doctors, who can work on a diagnosis, a med that you can tolerate, and only then will you really know WHAT you are up against.

Keep an on-going list of all your symptoms, no matter how ridiculous they may seem to such a strong woman, because these help these Doctors diagnosis you.

I have more Autoimmune diseases, syndromes, conditions, phenomenons, that you can imagine, because I finally found the right Doctor, but so many years of irreversible damage have come to pass.

The new biologic meds are the meds of the future, they can bypass all the areas that the regular chemical ones can't, like the stomach, liver, therefore less side effects, they pinpoint where the med is needed right to the very cell, HOW AMAZING IS THAT?

BUT, you have to try a couple of the old chemical ones (so says the insurance companies) before you get to start trying the new, expensive ones, and they all have financial support for us, the Doctors know, believe me.

It is a long process, not easy, but you owe it to your son, you owe it to yourself, the proof is as sure as it can be right now that most autoimmune diseases are inherited. I do not have psoriasis, why it was so hard to diagnosis Psoriatic Arthritis, BUT my grandkids all do, everyone of them, and my great grandson was born with it, so the percentage on the statistics to them having it are pretty high, my son not even 40 has the back of someone in his late 60's who did hard labor. So, they ALL have it,and suely as humped, hunched and gnarled as my ancestors were, they all had it.

I have bought all the health food store supplents, the stuff from the infomercials, homeopathic...it goes on until the end of time. NOTHING there will slow the fast progression of the damage that these diseases can do.

You have to realize that no matter how strong and determined you are, you need medical treatment, and you need to get a diagnosis.

I am not a medical doctor, not trying to scare you or misguide you, I am guiding you right where you need to go. They are the only ones qualified to help you, if you have one you feel is not helping, get another one!

I know I joke and carry on sometimes, I am moderator of Psoriatic Arthtiris group at Ben's friends and hear their stories, and your stories, and continuously tell my story and sometimes you just have to be crazy and laugh, because there is alot of crying, no matter how strong you are. I am being as straight as I gets, and really it is good advice for everyone. Why? Because I was standing in the same place you were, and know so many who started here. Why, because I am not much use in the working world anymore, someone else has to vaccuum and scrub my floors, never thought that would happen when I was still in my 40's, though the latter part. Why, because I want you to get there before I did! Why, because I want to help you, Why, because I care, and I can. I can do something good, really good, really useful.

SK

Please consider this, please? I am not a doctor, and do not profess to be one, I am strongly advise you to get to a good one, and listen to him!

I send you strength,

SK

Will talk anytime, leave me a message, or Renie can hail me from the Psoriatic Arthritis site.

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Thank you so much for sharing. Great post.

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I was denied on my first try with SSDI claim, now its time to get an attorney!

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Good girl!

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Great info, Mary, thanks for giving her the help on that end! Another woman of power! I love it!

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My thoughts and prayers are truly with you, for I have a young son and because of this illness, jobs are limited, so I am struggling to care for him. I agree with others here that you should definitely only do the supervisory part of the job, if possible. You are putting too much on your body. No one seems to get it, except us here on this website. God bless you and your son, and let us know how things turn out. We're here for you.

11

I got myself in a state like that and was in and out of the hospital and finally did have to quit work altogether. I was lucky to get on disability. It sounds like you need to definitely cut back. Maybe you should take some time off just to deal with your health. I don’t see how how you are keeping your sanity and caring for your child. Wow, you must be doing better than you think. Take time for yourself hon.

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Hi Mo, you are never alone. You have all of us here on fibro.org for friendship and support. I admire you for trying to do so much. Trust me fibromylgia will never be a stupid disease. It is a disease that attacks your nerves, muscles and tissues of your body. That is why you are hurting all the time. Your job is extremely physical.

We all need a friend to vent too, or someone that understands us. About your job, I wouldn't quit, but I would talk it over with my supervisors and tell them what your limitations are, and advise them what you can do. I would stay on as Supervisor and quit doing the physical part of the job. Or, I would look for work that I could do and not have to be so physical on the run.

What type of meds are you taking for your illness? Have u approached your doctor about getting disability? Is your son old enough to work?

If I was you, I would try to find a new doctor to go and see. Your present one doesn't seem to be taking the proper action that is needed to help you. Most of us are on daily meds, and we all have pain meds that we take in additional. We take them daily, not off and on as needed. Try taking power naps of 15 minutes of less two or three times a day, that will help you too.

Lastly, when you come home from work, lay down and rest for 30 minutes before doing any household home chore.

Rest....relax....do research on your illness...believe me we all understand here about the pain we all endure. You can do it, you just have to believe more in yourself and rest more. I will keep you in my prayers. God bless u.

13

I think this is GREAT advice! Save yourself year of grief and find out what's what here.

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MoMerrell, sending you HUGS!!! right now because you sound so down and frustrated. Don't worry, we'll help you through this. You are not alone!

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Thank you but I have been denied 5 times for disability/ ssi and once with an attorney. It’s because I work. They look at me as not disabled because I work but I’ve told them that without work I cannot survive as I cannot get public assistance here in Mn anymore…my time has been up.

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Thanx…as for my job…my boss knows that I will be stopping housekeeping however we are still training new attendants and I cannot leave the other girls short…in a few wld the plan is to stop the h.keeping part.



My son is only 10 so not old enough to do anything on his own really…lol…



As for doctor…I was booted from the pain clinic cause I missed 8 appts in 3 years and you kno they have rules about that…plus the Dr I had for yrs left the clinic and they stuck me with some broad that would never see but would prescribe me any drug I requested without fail…the disturbing thing about that is I don’t take meds…my old doc knew that. So after they booted me I rely on my 7yr rhuematologist…she’s a big help. She does all that she can and i still hurt. I’ve had every procedure/test possible that’s non surgical…



As I stated above I am constantly denied disability. Even with a lawyer…its depressing because they think that because I work I am not disabled but I can’t afford to not work just for them to see I need help. Who will pay rent? Energy bill? Phone? Buy food? Get me to school? I have no help and no savings…I live day to day…I get tired of seeing that quick response " we’re sorry but no" letter from social security…it hits my mailbox before I even get home…smh.



Meds are not in the picture and won’t be. I took two flexiril the other day as a last reseort and nothing…I will not suffer those side effects from meds again. I do a lot of fibro research…a lot. I can usually get myself to feeling better thru a mini flare up but this one…it ain’t go away.



As far as resting…ha. I walked thru the door yesterday at about 230 and the first time I sat down was at about 8ish…laundry…dishes…study…take garbage out…get the kid haircut…buy his stuff for out of town…fix dinner…I js didn’t have the time. Napping is foreign to me…I go to bed about midnight. I hurt too much to sleep. I take melatonin…helps sometimes…other sleep side give me migraines…smh…sigh disability support would greatly help me…I will apply again but I will not get my hopes up…maybe if I went to the office dressed like a bum and foaming at the mouth smelling like cigareetes they’ d help me…when I went to court…the judge spent 3 mins…looked my case and said ." Since u have been working…we don’t see u as disabled. If u were on state assistance (welfare) we’ d be able to look past this but u work and therefore we can’t help u." Will never forget those bullshit words…



So as u see…dilemmmmmmmasssss



Thanx all for support n everything else. U guys are rock solid…

Sorry for typos. Typing this on my phone during an 8hr megabus ride to Chicago with my son…ugh

17

If you go on temporary disability for one year then you will not be working and they will approve SSDI. You can also apply for other benefits probably due to low income. When you apply make sure you put down EVERYTHING from your medical records. Tell them everything that you can't do, EMPHASIZE. Tell them your son does housework. Make sure they know how BAD it is.

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And read up on fibro sites to see what everyone else suffers because I'm willing to bet you suffer the same things. There are plenty of things you're experiencing that are fibro related but you don't yet realize it. That's why reading these conversations is so helpful. End result - add ALL of the fibro stuff onto your disability request. Getting treated for depression, anxiety? Let them know how much fibro is messing with your mental health too, and include who you're seeing, if anyone. EVERYTHING. Go back in time and start documenting your pains and what's happened as a result. Heel pain? Can no longer walk, only limp. Went to doctor for treatment. Cannot do your job or housework. Fibro fog? Saw doctor but end result is can't remember anything, can't do a desk job as a result. (True, sadly.) Finger pain? Can't pick things up, manipulate pens, type, etc...

I think that gives an idea of getting to the nitty gritty of your illness. Heck, I'm going to need to do this myself, soon.

PS: have heard it's easier to get approved under the Obama admin. so might be a good time to get working on it.

19

Dear Mo,

I am rethinking, and still with you. I'm not giving up, and I know you aren't, but I surely understand how you must feel, it is a tough road as a single parent even if you are well!

Still with you,

SK

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My thoughts are with you, Mo. I know you will get this figured out because you have a tough fighting spirit. I’m sending big hugs and support your way.
Sunflower