I think I may have bitten off more than I can chew. I may have underestimated the hold fibro has over me…My work is mostly at a desk, in a shared office at a university. I'm also working towards my Master's 4 nights/week. Finals and papers for my 3 classes will be due in 2 weeks & I am struggling. The holidays are just around the corner, and I've only begun bookmarking stuff I can buy online, so as not to deal with any retail madness. I'm having issues staying motivated, focusing and even keeping house. Showers exhaust me and leave me breathless and groggy. Baths don't leave me feeling "clean" at all, so I rarely do those. Loved ones don't seem to take my illness seriously and rarely do things voluntarily, to help me.
The snow and chilling cold of my region makes me want to hibernate, but I have to brave it all, and take public transportation to and from work (we only have 1 vehicle, that my Fiance uses) My man and I have different off and work schedules, so I am alone a lot. I am homesick, my grandmother just passed (in another country) and am having a very hard time with everything.
The pain comes in waves. I get tired for seemingly no reason. Almost done with a round of antibiotics, as I am getting over a nasty sinus infection/the flu. Also, I've been experiencing night sweats and vivid dreams the past few nights. My rheumatologist is booked for the next 6 months, I feel as if I have built an immunity to my meds & I really am NOT looking forward to thanksgiving.
I am not sure what to do. I am tired, hurting, lonely or always wishing I was elsewhere.
Not sure living in this area is worth being with my man anymore…or even if my job is worth being here as well. I fantasize about packing up and moving someplace and just being a single mom for the rest of my life. It's so hard to find someone who cares/understand and doesn't give me weird looks or sighs when I tell them "I don't feel so good…"
Get hand and feet warmers!! invest in excellent coat too, sock(smartwool or hand knit ones are best)
Keep your residence warm....take a lot of baths with epsom salts( you can use oils to scent it) some bubbles to keep heat in and bit of oil for skin..not try it out. Heating pads and blankets also help so buy them!! you need them to keep your areas that hurt most warm.
Voltaren gel does help with fibro pain as does TEN's units..buy at drug store or online.online you have more options. NSAIDS like motrin at prescription levels can help...avoid cox kind..too many issues with them that are not good.
See counselor if you can as ...grief one if they have one in your area....you need to talk to someone and help with grief of our grandmother plus having a chronic disease. Also...you should have car if you travel as any time in cold only is going to make you hurt more.
Try support group of any kind that appeals to you..fibro, chronic health, women's journaling, grief...just to get out and make friends. Friends will take your mind off it, make you laugh etc...evening a pet might help..just bird if nothing else or fish. IF you are having night sweats...unless menopause age...you must insist on seeing your rheum..night sweats and fevers..low grade can be sign your diagnoses is not right or something else going on...check for lyme, polyrheumatica. D and other disease it might fit... what is best is to find a excellent doc who cares. 6 months is too long what might be serious health problem...crazy and not acceptable! good luck and hope few ideas of mine can help even a bit....
I read what you wrote and I can feel your pain. This diagnosis is a horrible one to live with and trying to cope when it constantly seems to get in the way of accomplishing things we want to get done and fulfilling our dreams. I can attest though, I completed my MSW with this diagnosis, worked full time and completed an internship required for my degree at the same time. Even though we feel as if we aren't being successful, we are! We are thriving and conquering despite our illness. We need to give ourselves credit for the accomplishments like making it to the classroom, going to work most days and taking care of our family the best way we can because we often overlook these strides.
My counselor explained to me when I said, "I get tired for no reason", that I get tired for many reasons I am not even realizing. First, constant pain is a drain on our energy supply whether we can detect it or not. Chronic Fatigue Syndrome can accompany this diagnosis and that is a drain and constant problem with our energy levels. Stress can also make someone tired. Also, when we are in pain, we strain and try to stay in positions that feel better. This stress/strain can make us tired.
Also, I try not to be so hard on myself about household chores and obligations. Is the house tidy and in reasonable order? Yes. Is the Universe going to punish me if I don't get laundry or dishes done today? No. Do I have clean clothes to wear tomorrow? Yes. On days when I cannot tolerate housework, I just let it go. The world isn't going to crumble. This was hard for me to accept at first because I am a neat, organized person and I had to realize that nothing bad is going to happen if my house isn't perfect.
My heart goes out to you and all that you are dealing with currently.
Some great advice on here for you. Just like to add my ideas, things that have helped me.
You have taken on a lot, and if you are able to accomplish these - brilliant - well done! You need to be kind to yourself. Pace yourself, do what you really need to do. I have found that I need to educate my family, pinpoint web sites that might help them understand better. Tell them what they need to do for you!
Gosh I feel your pain. You are not alone. It is difficult when the life that you have chosen for yourself, that you feel you will be the best fit for you, doesn’t always leave you completely happy and without struggle. Being alone for long hours or days at a time, having daily pain and health issues, and working on way too much at once in your professional life. That’s tuff. It’s crazy, before this I could do 90 mile an hr at home cleaning on my days off, 90 mile an hour on my feet as a nurse, doing above and beyond to keep my man happy, my kids happy. Well, it killed my body doing that. Now we are forced to stop and think about how to take the best care of ourselves, be selfish for once in our lives and truly think about what is healthy for you right now. Maybe making a list of pros and cons of living in your situation. I looked deep into my life and am still having such a really hard time adjusting to the fact I will always have this diagnosis and then how grossly i have been mistreated, ignored, disrespected because of who and what I am today vs the woman I use to be. So much happens now that I can’t control, and it frustrates me that I can’t change things, you are not alone, you have choices. Nurture yourself extra
I also like to say...when i got diagnosed with RA and SLE( lupus) i was in college and what had been occurring was i kept getting Mono which back then they thought you could only get it once. So i miss more classes( which some professors did not care if sick or not you were out of their class) and work...who also was not happy.
Eventually, i had to accept i could not have my dream ...just no way i could work and continue with college even at part time classes. Yes it hurt and still does at times.
But i was lucky i did get great job, full benefits even at part time ...best my bosses/ coworkers were generally great and believed me when i was sick.. I had hoped to go back to college later in life, retirement but my diseases have continued to worsen ...but positive side, many Vets( which is what i wanted to be) became friends and let help out at their offices and i just on my own continued to keep on it....science etc...
So sadly sometimes we might get what we hoped for in our lives but hopefully another door opens that is better or just as good. Just something to think about if you feelin way overwhelmed and not enjoying your family most of all...that goes by so fast...slow down and enjoy them.
But if you can accomplish it all...than count your blessings!! I tried over and over and kept ending out not able to either get out of bed or in hospital...and now that it is some 30 years later...i get i felt much better back when i was young vs now in late 50's.
So if you can do it all..be proud all your life because cost you much more than average student...just do not miss out on your family. good luck on following your dreams.
On your last paragraph I noticed that a possible move would not include your 'man'. I think if you want to start somewhere you may want to explore your feelings about the loneliness you feel. Things not working in a relationship can seriously affect our energies. You indicate that you want to escape 'wishing I was elsewhere'. You might want to explore what is behind that feeling, what in your current lifestyle is not working for you? About 15 years ago when I was married I started to keep a journal about my feelings in my relationship and I began to notice patterns in the week where I felt angry or unappreciated. After some entries that included the details of incidents I sat down and discussed these issues with my husband and he was quite willing to work on the issues with me. Our communication improved (maybe too well). The journal really helped me target my feelings and identify triggers. Sometimes we just have feelings of exhaustion from the fibro and include that if it is a source of loneliness.