today's pain

Today is not a day that I am proud of. An ever-present challenge/goal of mine is to not allow fibromyalgia interfere with my commitments to my clients. Well, that's a hard thing to keep when one can't walk. I hate when this happens! I feel so cripple and limited. I was supposed to take someone to the Dollar General at 9:30am. I promise I got up to honor that commitment but I can't get there. If it doesn't happen today, we can't do it next week because of his schedule. I don't know how to accelerate my healing. I did an epson salt and baking soda soak last night. Tramaddol really does nothing for me. I can add tylenol, muscle relaxers, trauma oil or bengay but the risk of being too sleepy or drugged to drive comes into play the more of that stuff I take.

Last night, I cried in bed because of the pain. One lady in my Mphs chronic support pain group used music to soothe her when things were especially bad. I tried to groove to Goddess and She but that did nothing for the pain. Eventually, I focused on my belly and gratitude for it not hurting. I expressed gratitude for fat as every muscle some joints from ankle to shoulder seemed to be in pain. And I had already taken trammadol before bed. I consented to taking tylenol because I knew the pain wasn't going anywhere with the way it was. Then I woke up every 2 hours throughout the night.

This morning, I questioned if I would be able to walk for the 3rd time in a week due to the pain I felt when I first got out of bed. This time, unlike the others, I couldn't walk to the living room to get to the trammadol. It took me 45-60 to get from my bedroom to my living room, with a detour to the kitchen for water and food. It hurts to stand but I can do it. Walking elevates the pain and I can't take it. Does that make me a punk? I feel like such a quitter when I have to throw in the towel and admit defeat. I'll probably spend much of the day in bed or on the coach doing things I can do from one location but the _UCKING PAIN. I can't get rid of it and it keeps bringing me to tears. When I called in to work (3 ppl), everyone thought I sounded sick. That's the effing pain, maine. i'm not coughing. My nose has been bleeding for 2 weeks but I don't have the sick leave to see a doctor. blah. I tried going to the Little Clinic (Kroger) in Mphs but they wouldn't see me bc of my symptoms. darn. There's an after hours clinic here too. I need to get info on how to be seen there. Today's illness symptoms is cutting into the vacation time I'm trying to save for CA. If I only had a wheelchair....

I'm so sleepy.........................



EDIT I regained the ability to walk short distances around 4 o'clock. Now the disordered day is being topped with a migraine. Again, computer light is especially troubling. My screen is dimmed as low as it can go. However, the nausea is increasing again so goodbye.

chronic fatigue

This is affirming (I don't think that's the right word, but I've been battling brain fog for 3 weeks now): http://www.psychologytoday.com/blog/turning-straw-gold/201105/the-stigma-chronic-fatigue-syndrome-ii-readers-respond

The experiences with the doctors remind me of the experiences I have with people. This week (last week?), I barely made it through my work days. I came home and went to bed by 6pm. I slept until the phone rang or American Idol came on. I showered. I went back to bed. Wednesday, I reached a low in spirit; Thursday, I got a break and started to feel better. Friday, I was still on the up swing so I stayed up until 11pm or so cleaning in hopes of getting to Memphis before Sunday to appease my girl. Saturday, I paid for it. My body reminded me that I am not healthy and I am not in control. I had somewhere to be by 10:30am Sat so I drug myself out of bed around 9. I made my two errands, I went back to bed. I slept for 2.5 hours, again woken by the phone, then I went to the laundromat. That 90 minutes of activity wiped me out but because of the late hour, I decided to stay up until 8 and then sleep for the rest of the day. My evening consisted of things I could do while sitting, as I didn't have the energy to much more. This morning, I slept longer than able if I planned to go to church. I wanted to go visit a church; I didn't go visit a church. And here I am sleepy post breakfast, needing to get ready to hop on the road. I'm starting to fear I-40 more and more as it really isn't safe to let me drive like this.

Explaining this experience to the normals doesn't go so well. They tell me they get tired too. Like this? Where you are too tired to eat and sleep for 12+ hours each day? Where you can't remember anything especially once you "wake up" from the cloud and realize you have no idea what's happened the previous 5 days? Do the normals struggle with the shame of calling in sick and then explaining that the sickness is fatigue? Do the normals stay at work knowing they are "sick as a dog" but refusing to look like less by going home? I can't imagine their experience being like mine but since I can't remember being normal, what do I know? All I know is that I am viewed as weak for giving in to the fatigue. I know that people like to tell me to exercise and I'll get over the fatigue. Really? I can't stand and clean my kitchen for 10 minutes but you want me to start an exercise program? Nevermind that I exercised 3 times the week before this fatigue period took control. I just need to push through, exercise some more. The lady in the article is right. People tend to view us as just lazy. People assume that I never exercise and that's why exercise will make me well. I exercise more than most of the ppl that say that shyt but look, it hasn't helped.

And then there's the relationship piece. Where are the posts and articles about how chronic fatigue and chronic pain f_ck up one's love life? Tammy has been so great to me concerning the pain but I don't know if she can understand the fatigue. Sometimes, I seem to just sleep all the time. Now, I disappoint because I didn't push through the things I need to do and hop on the road sooner than I planned. She hung up on me last night. Disappointment. Shame. I wish I was stronger. I think my strength made me sick. Life is showing me that I don't control shit. Here I am, less than 90 minutes up from a 12 hour sleep, ready to crawl into bed again. Good luck to you on seizing the day.

EDIT: Tammy didn't literally hang up on me (i.e., in the way typically thought of as hanging up). I called her. She didn't like what she heard. She said, "okay. I'm gonna let you get back to what you were doing". Click. The conversation lasted less than 10 minutes and I called her. Why would I need to get back to what I was doing? Hence, my "hung up" expression.

joys and concerns

I am really angry this morning. I am here and listening to Christian worship music trying to shrug it off. I have been trying to work the anti-inflammatory diet for about 6 weeks now but have not received the relief I crave. I have not been great about working the plan. In the beginning, I'd give myself a B- on success. Lately, I've been better but I still haven't overcame the damage I did to my body during the east coast trip. It physically hurts me to walk from my apartment to the dumpster now. Every day, I wake up stiff and achy. I'm bent over from it all but straighten up as I walk. To top off the fibromyalgia, I'm having issues with my wrists and shoulders that my doctor thinks is due to carpel tunnel syndrome. Thank God I get to have a nerve conduction study done Monday to test that theory and move forward with the treatment piece. Since my work trip/vacation, Tammy has been complaining that I moan in my sleep throughout the night. Pain? I effin hurt and I'm tired of it. I'm not gonna lie and say I've been living with a level 8 pain these past 6 weeks but fucking with my ability to live my life (e.g., go to the dumpster) is what pisses me off the most about pain. My pelvis hurts. My legs just scream of pain from time to time, like when I lay in bed to go to sleep. Fuck you fibromyalgia. Fuck you capel tunnel syndrome. Fuck you body for working counter to science and not really caring about my changed diet or resumed slow and easy exercising, trying to build you back up. Oh how I want ability back..........

blah. I put it out there but don't feel much better for it. I took trammadol at 6:30am hoping to feel better when I really got up (9:30am)-- didn't work. Hold on-- going to add Tylenol to that formula.

A former roommate taught me how to know which oils are good for me and my issues according to someone she knows. Close your eyes and hold the bottle. If you sway forward, it's for you. If you fall backwards, it's not. Cool, huh? Well, I bought eucalyptus oil based on that premise and she won't mail it to me. That urks me too. Yes I left it but I offered to pay for her to send it to me; what else can I do? It's approaching 2 months of my gluten free cooking magazine (which would be quite helpful), my oil that I hope will relief some pain and is also said to help with sinus issues, my incense that I think smells divine, relaxing, Trammadol which is/was quite important to me, and clothing somehow missed have been trapped at her house. I know she's sick too but it's been long enough that I think it's etching past the patience thing. Plus, she ignored my first voicemail, e-mail, and text inquiring about the status of my things being mailed to me. urg. I was hopeful for them when I purchased those things. Now they are becoming a distant memory, something I won't have to help me in my journey. I do know of an overpriced coffee house that sells the incense and can probably get the oil at Whole Foods. I guess I can rebuild those hopes. * sigh * And yes, I know it's my fault for leaving them and yes, I'm grateful that she contacted me to let me know they were there as I had been searching my place for them.

The good in life? I interviewed for 2 different positions at VA hospital this past week and a half. I especially think the first one went well. My answers were strong at the second one but I wrote down the wrong interview time on my calendar and arrived 15 minutes later than really scheduled (15 min. earlier than what I thought). By this time next month I'm hoping to know whether or not I'm finally in. I have mixed feelings about the whole thing. The committe for the home-based care was really warm; they seem like a good team to work with. I'm not as sure about the HUD VASH Social Workers. I like them; I'm just getting nervous. When I thought about accepting the home care position if offered both, my spirit told me that's not my passion. Yes, I can do it but it's not my passion. The HUD position will challenge me as my load will be people that are chronically homeless. That's a special load there, especially since they're looking at those that have been continuously homeless for 1 year or more. The other definition of chronically homeless is 5 or more episodes in 3 years. Okay. That's jacked up but they're showing some resilicency by being housed sometimes. lol. They're gonna set me up with addicts and unmedicated mentally ill people. I really don't know how I'll fare there. But I don't think I can back down. I entered my field dedicted to working with people that are homeless. I started with homeless singles, non-addicted, moved to homeless families, am working with homeless addicts; VASH will just take me up one notch. I have long said I need experience working with the various sub-populations within homelessness. Well here I go. In their homes once they get them. It'll be a cool position. I'll get to give Section 8 (HUD VASH) vouchers to veterans, help them get moved in, and follow them for case management. I'll be working in permanent housing, ya'll. Yea! We'll see.

Pictures from my work trip/vacation:

I got to be in the store for about 2 minutes but it was quite exciting. I bought a window cling. My co-workers waited outside.




Patti Labelle concert the last night of the Catholic Charities conference. Awesome. Wished she was on stage longer but she was great.

Yea for seeing Ingrid, a LaGrange College friend.

And yea for meeting newer family members. This is my cousin Rodesha's daughter. She's one awesome chick.

NY planning

Dag blasted! I'm supposed to go to New York on Wednesday and ya know what I was planning to do? Go to the top of the Statue of Liberty. Guess what?! F_cking fibromyalgia! I can't. I'd have to walk up 354 steps. Even if I could physically do that over say, 5 hours, I don't have the humility and patience to see what the experience of taking hours to get somewhere would be like. Plus, I'd be in gops of pain the next day. fuck you fibromyalgia! This is one big F you to U. Grrr!