A cry for help! Where do I go for support?

[Kenderyl]

Ok, so today I was on my own with my toddler and my profoundly autistic daughter, driving from Vancouver, WA into Portland to take my daughter to get her O/T eval done. First of all, I was already achy when I got up this morning (a pretty common thing for me since about April) but gah, I was also SOooooo fatigued that I struggled concentrating/focusing at driving about 1 mile after passing over the I-5 bridge... by the time I got to the parking lot at Emanuel I was a little better but feeling extremely overwhelmed. Walked (rather, hobbled slowly with a slight limp) the girls into the building - lights, movement, hospital smell (which always brings on PTSD symptoms of anxiety after my last pregnancy), I wished I had just stayed home and cancelled - I was just draggin' my butt trying to get down the hallway and check my daughter in. Once we got to the offices, I was wiped out. Then my autistic daughter had a melt down because she wanted to play in the playroom - it took all my energy to try to get her attention but she continued to cry and scream and I felt SO bad for her, then she nearly kicked the O/T assistant in the chest after nearly kicking my toddler. I apologized and tried to retain some composure but inside I just wanted to cry.  

The additional stress caused me to have issues with my ability to answer the O/T's questions without stuttering and stammering, then I started to ramble and apologize for my seeming stupidity and explained that I was having a tough day from Fibromyalgia. Later during the session, I struggled to mark the check boxes in the forms she'd given me to fill out, and oh, did I mention the extreme fatigue?! I could've just laid down in the middle of a hallway and passed out I was so tired! Just before they released us to go home, I realized that I was feeling like I was moving and talking in slow motion and everything around me felt like it was going full steam ahead - which made me feel very self conscious. I left, feeling numb - walked the kids back to the car and just sat there for several minutes doing deep breathing exercises to get a grip. I got my senses under control right up until I took a wrong turn that headed me to the wrong side of the river across a bridge.... took me a while to turn myself back around with all the one way roads (I hate Portland now and used to feel comfortable driving in the city!)  We got home safely but I swore to myself that I'd NEVER again drive any further than 5 miles from my home by myself or especially with my kids unless it was an absolute emergency or until I'm symptom free (oh yeah, no current cure and not much of a chance anytime soon... grrr.)

Is this going to go away?!  Every freakin' day is this busy for me (I mean, c'mon! I have four kids!! 2 with ASD, 1 with PTSD, and a VERY busy toddler). How am I supposed to function when stress is part of our every day lives when any stress causes my symptoms to flare?  My Fiance is trying SO hard to understand but how could he possibly? He's sympathetic but, let's face it, my health is drastically impacting him and he's over-stressed now because of it too. Tonight I hurt so much... but still had to go grocery shopping for my family as we were OUT of food (we're SO financially strapped lately). I fear tomorrow is going to be horrendous... and I'm home with all four kids until the afternoon as they're out for the holidays. I LOVE my kids, wish I felt good 'nuff to play with them or take them out for something fun.

I don't have family in my region of the US and even fewer friends and even if I did, they wouldn't likely understand. I really need to find a regular "Fibro Friend" that I can check in with when I'm having a bad day and they can do the same. Even better if there is someone nearby where we can go out for the occasional Jamba Juice fix (or coffee if preferred) and just let it all out. I think ultimately, THAT is going to be my best ally above and beyond any therapist who may try to understand but hasn't experienced it. Does that make sense?  During my pregnancy I struggled with, I had an online support group and was even paired up with ladies from my same time zone (it's rarer than Fibro so a match to someone in a time zone was more likely than one in your own state sometimes) - anyone know of anything like that?

[VaBreeze]

Have you already filed for SSI or SSD?  When I did and they received everything, I had a phone interview also and it was just a few questions that they had and to tell me what would happen next.  

Hope things will calm down for you a bit this evening and you can get everything you need in order so you can receive some help soon.

Take care and stay safe.

[Kenderyl]

Thank you.

Unfortunately I had already inquired about the support group in my area only to find that it has some serious dysfunction going on and a lot of drama. The leader apparently lost her son unexpectedly and the woman who took over has been pushing members toward certain types of treatments and putting down the new members for wanting to try more homeopathic remedies first, etc.  The drama isn't something I'm really looking for. :(

The home care services in my area are apparently completely dependent upon me being approved for SSI or SSD. I had a phone interview with the SSA office for Tuesday but I just wasn't ready and had been advised to request that the meeting be postponed to give me more time....the lady at the SSA office reluctantly gave me until December 5th (after trying several times to convince me to just keep my initial appointment.)  That means no services or help for who knows how long.

My Dr's office called today to let me know that my Rheumatology referral went through and to call the Rheum office to schedule an appt, but when I did they didn't have the paperwork - told me to call back next monday.  The referral coordinator did not know of my Neurology referral and said she'd have to check back with the doctor on that because it wasn't in the file - that's when I spilled my guts over what happened yesterday and tearfully told her I felt like I was losing my mind yesterday and that I refuse to drive anywhere until I'm checked out.

[VaBreeze]

Please check your inbox Kenderyl.  

[VaBreeze]

Ok fibro fog.  Vancover it is, lol

[VaBreeze]

I know you feel overwhelmed.  Have you began taking steps to checking into the home care services or programs?  The day you described is a very good reason to do so.

What city are you near in Washington?

[kiddthekatt]

Kiddo;
   I wish I was closer t you, but I live in the Houston area. I understand the pain, stress, fatigue etc. etc. that you are fighting but I only have the 1 grandson here. I've had him since he was 3 days old, ( long story ) and he is now almost 14. To be honest I don't know what I would do if I had small children.

   I have a Fibro support group that I meet with 2 times a month, and it has been so helpful. If you would like, I'll call the leader of our group and ask her if she knows of a support group in your area. My hart goes out to you, I know how hard this must be on you. Take care and feel free to pm me any time.

gentle hugs
Angel