I'm still alive....Days 2 - 5

Hey everyone! I am really sorry I haven't been on point with updating daily.  I moved into an apartment this weekend to really be able to focus and have alone time when I need it - to really give my all to this thing!  Then late Monday and yesterday I had a bit of a set back with a CFIDS flare up and small UTI.  I could feel it coming on Monday afternoon and slept allllll day Tuesday (which I didn't count towards the "days" I'm listing as I didn't go in) and alll last night.  Well seeing as how I don't sleep at night - let alone during the day - along with the migraine, severe fatigue (couldn't get out of bed) joing pain, muscle pain, blah blah blah the usual....I knew i got slammed but thankfully recovered enough to go back today!

So in any case I'm still increeeeedddiibbbly tired and fatigued because of the flare, but I've handwritten my experiences every day and will write about them soon so you can really get an idea of how amazing this program is.  The staff - ALL of them are the most amazing people - incredibly talented and smart in their respective fields and just so kind and generous.  I truly am feeling better already especially having started with all of the stretches and gradually adding.  The breathing has been key too!

In any case, I hope you are all well and staying POSITIVE....it's really hard to do sometimes...but it's the only thing that can keep us pushing forward.

<3

Day 1...and ME/CFS and FMS Awareness Day!!

Well - today was very interesting.  The staff at the location I am attending are all very friendly and enable you to be optimistic (as you can see from my reply to the comment yesterday, there are many of these programs so send me an email and I can either let you know of the few in my area or look to see if there are any near you - the biggest thing to look for is a physiatrist in your area which I go into a little more below).

In any case, it was my introduction day and needless to say I got lost and was about 10 minutes late...ooops!  They start sharply at 8 am with relaxation, but I had to go through the orientation anyways so I didn't get to take part in that yet. During this time, the PTA explained the goals of the program, the philosophy of treating chronic pain as opposed to isolated and specific pain and discussed the pain cycle, gave me background information on all the staff and available staff, and laid out the groundwork for the customized comprehensive treatment.

I started with the basics - and will continue with this for the rest of this week, then we'll move on to targeted problems.  So today, after orientation and paperwork, I was given a big book of stretches which is what I spent most of the day doing.  They are with you the entire time, so they are able to show you alternate ways to do the stretches if it hurts certain muscles, how to actually do it if you are performing the stretch incorrectly (as i was a few times), how to relax, breathe, even get up and down correctly (who even knew there was a specific way to do that?!).  The entire goal is to identify your pain level when you walk in - and make sure at no time you exceed that pain level...it would be great to go down, but never above when you walked through the door.  Of course that evening or next day I may be worse (as I'm feeling now), but I haven't done these activities in so long it's to be expected. 

Next we went into a room where everyone lays down with heat and/or ice and has a 15 minute breathing quiet period.  We do this twice a day - before lunch and before we leave - it's really awesome.  After lunch it was back to stretching until Biofeedback time!

This time I was able to really get a good view of how my breathing and every move I make is affecting my muscles and tension.  I got it down a lot lower than the evaluation so I was happy!  Then back to more stretching and aside from a few breaks and that last quiet breathing time, that was it. 

Although I'm sore now, it felt really empowering to have some sense of control over my relaxation and feel myself feel a little better (not from my meds, but from me - even if it was a short period of time!).  Now tomorrow I meet with the actual Doctor (a Physiatrist) who manages the program so we'll see how that goes.  Here's an important Doctor for those of you looking for a similar program - a Phsyiatrist works on pain as a whole and often works with a variety of doctors, pt's etc...so even if there isn't a program like this in your area - if you can locate a good physiatrist, they will likely be able to construct something similar for you!

Ok anywho - they also do the whole team evaluations on Thursday - although since I'll have only been there a day, mine will be short - but usually during this time they evaluate your progress with the whole staff team in the room (from the PT's to the psychologist to the nurse and doctors, etc.).  How awesome is that to get comprehensive feedback??!  I'm excited to really have this done next week! 

So I'll keep you posted on how the big doctor visit goes tomorrow and hopefully next week we'll start getting into some specifics!  I'm happy to provide more detail to anyone who would like to email me!

Finally - today is the 18th Annual International Awareness day for ME/CFS and FMS!  Remember your Blue ribbon for ME/CFS and your purple ribbon for FMS!  IF you can, try to take part in any activities that may surround today, including a few petitions out there for each disease that have really great causes.  Also, reach out to your ME/CFS and FMS friends today...a little love goes a long way and let them know you're thinking about them - I am sure thinking of all of you and hoping and praying that you find moments, no matter how big or small, during your days where you have relief and are able to smile, giggle, laugh, and see past the pain to enjoy the wonderful things that make us want to fight these diseases - because there are so many reasons.  Bless you all!

30 days to the new old me...

So, I haven't been on in a while and soo much has been going on. I promised I'd write about this chronic pain rehabilitation program when I knew more - and although I don't know everything, I have been accepted and begin treatment tomorrow!  I was really unsure at first but this program is 4-6 weeks, about 7 hours a day (so I had to take medical leave from work) and it's all encompassing.  There is a lot of physical therapy, a nutritionist, a cognitive behavioral therapist, a biofeedback specialist, nurses, a nutritionist (which is major important with my vulvodynia, IC and Ulcer diets all conflicting!!!) doctors, etc.  They meet and discuss the case as a team and work together to get me to feeling better!

I originally had the consultation/evaluation and had to do a bunch of written work and questionnaires.  Then I had my physical therapy evaluation where I found out I have a lot more problems than I thought! I have tennis elbow, golfers elbow, an SI problem, a tilted pelvis, knee problems, scapular problems, severe neck and shoulder problems, etc.  I also have a huge muscle tension problem and myofascial pain syndrome.  So - the good news is they can treat all of these things!  Through the intensive PT - I'll be able to reduce my pain; through the biofeedback I'll learn relaxation techniques, the correct breathing methods and ways to bring my tension down; through the counseling I'll learn how to cope - and there is a huge success rate!

So in any case, the first 2 weeks are the most intensive and will most likely cause the most pain - so I don't know that I'll write every day - but I really plan to relay the progress as much as possible.  This comprehensive program is so exciting and I am so hopeful that it will help me - and eventually help others.  I'll never be the old me again...and I'll never be a whole new cured person....but once I reduce my pain and learn how to deal with it better...I'll be the new old me.