Day 9

Today over half the class was off sick.   Two therapists were also sick.   I have my defuser on high alert with Thieves going.  Had morning movement were I pushed a bit too much.  Cardio and individual exercises I was able to do 5 minutes on the stepper again.  It felt great and powerful.  Andrew and I made a plan on how to get me back into the water.  I'm going to start group training in water with Tracy on Tuesdays.  I'm beyond the hydrotherapy classes they say.   Andrew also kicked up the notch on my cardio and I can do another minute or two as tolerated.  I'm happy to be able to do more.  The group education class was on nutrition.  It was over my head and too scientific.  I just wanted the bare bones on what to eat and how to eat when I'm in pain.  I did book an individual session with her though.  I crocheted a lot at home.   Audiologist did more testing and there is a large discrepancy on what I can hear and should be able to hear.  My brain is overworking to hear.  The word descepancy tests are also getting harder to understand.  It's frustrating.   Had a good phone call with a close friend from years gone by.  Texted with a few Team Sam peeps and tossed and turned all night.  Until tmrw

Day 8

I picked up my newest friend Carole at the Days Inn today.  I think it will start the day off right, car pooling together.   Got to the parkade and walked in the mall.  Met up with Joanna and had a chat before clinic.   In Clinic we received our new schedules for the week.  In morning movement we went over the 5 principles for moving: breathing, posture, TA, pelvic floor and awareness.
In cardio I did 5 minutes on the recombant stepper.  It felt great knowing that I am able to do cardio again.  Individual exercises I did some simple stretches.  It's all going well.   In our group education class we had Tracy the Rec and Leasure specialist go over leasure activities and why they are important.   We can do so much if we find the energy.   They don't need to be social either.  Another specialist wants to do more test on my autonomic nerves.  Grand.  A good friend and I texted through out the night as I napped.

Day 5/6./7

I spent the next last three days catching up on life.  There was a lot of netflex involved.  There was a few phone calls which boosted up my energy and thought process.   I tried to go swimming and failed.  I thought about it.   That's the main part I think.   It's there at the forefront of my thinking.   Last week I was doing this program for others, this week I'm doing it for myself.   I fell down the stairs on Saturday, doing laundry.  I tripped twice out and about and fell straight on my face.  Good times really.  

Day 4

I started out Thursday by doing the exercise assessment.  Since I was double booked on Wednesday I was asked to come in early at 8:30am on Thursday.  I didn't mind as I would rather do it earlier than later.  I asked my Mantatawague partner if they would like to sit in.  They brought their whole group and three of them sat in.  It was okay, because I know they are learning too.   I ended up not being able to do much and felt like a failure.  It's not fair that 1 year and a bit a ago I was swimming 2 km most mornings and now I can't even walk 6 feet without balance issues while concentrating on a task.   After the assessment I sat in on group.  Today we learned about what creates pain.  Pain is from the nervous system.  When pain is caused, it travels from the area that was 'hurt' to the spinal cord which travels to the brain.  When people say that invisible illnesses are all in the head, they are completely correct.  They are all in the head.  However, they are REAL in the HEAD.   We then had another session on movement and why we need to move each part of our body, and what creates movement.  It sounded like physio all over again, activating the core muscles and pelvic floor to keep our backs strong and correct posture. 

Mark, social worker found me after floating in the hallway.   We had a chat in his office just about the new referrals.  I'm feeling pretty down on the whole thing; but we made it feel real.  I knew that it was a possibility but it still hurts that they can't fix me.   I spent the afternoon napping and going for starbucks with a friend.  IT was a good end of the day.  

GOAL: Swim 3 x in next week and a half.

Day 3

today I woke up in a sewer cranky mood. It was pouring rain and thundering out when I got up. It was dark and glumly out.   I drove off, through the rain and got my parking spot that I've declared as mine.   People were already waiting for group to start.   I went to eat my oats in a jar and realized I had forgotten my spoon.   So there I was without breakfast.  First session was about relaxation techniques with the psychologists.  We did the temple exercise that I've been taught in the pace-it program where you rub you thumbs against your eyebrow to relax you.   We also did a mindfulness activity where we walked across a beach.  They were good but in the moment.  Andrew, the kinesiologist did a movement presentation on why we need to move more frequently and the stats on moving in chronic pain.

I met with the occupational therapist, Kim for my OT session.  We talked about what my typical day looks like and she was concerned with the amount of things to work on.   She wanted to see me at 1 for a bit.  The mantatwague group  was supposed to join me for that session however they ended up get called in to a mental health session instead. I had a break after the occupational therapist which was good because I needed a mental break. I then connected with a fellow participant and we chatted for a bit. I met with Stacy and two of the mantatawague  people for my psychology appointment. He was good and goalsetting and just giving a brief history of me. We will talk about this again in the future. I kind of just ignore the other people in the room and just let my voice spell out in my heart say what it was feeling. I'm feeling pretty good and slightly overwhelmed giving myself out to people.   It's hard  to realize what my life is actually becoming. And that only four days ago I was a child protection worker and now I am Bess. I met with Kim again and she did more of it OT assessment with the Walker. It turns out that my foot is a drop foot but that it is turning outward and then I'm walking on the side of my foot which is why I'm having all of the walking difficulties. She will talk to The Physio to see what can be done.   She's not sure if the Walker will help me or not because she's afraid that if I fall backwards it's going to fall on me. We'll talk more about that next week however she wants me to use it in classes tomorrow. We did a few walk around throughout the gym using it and getting a feel for it. I'm still not sure but I'll give it a try. I came home and found mark again to give them an update.  DOT is essentially going to be putting a referral into my doctor to have a referral sent to neurology day program at Saint Joe's hospital immediately. She will then phone the OT at the neurology day program to get ideas of where we should start. Hopefully a plan will be put in place for next week. I feel overwhelmed that nobody knows what to do with me anymore. There's just so much going on in my brain just can't handle it. I was able to give her my psychological assessments for my learning disability that I randomly had in an email from an old professor. It just seems like a learning disability has been Expediated since the concussion. MS looks more more like a possible diagnosis and more test will be done for that. It just hurts some days.

Day Two

I'm feeling uncontrollably down today.   I feel too overstimulated with sensory stimuli.    The lecture workshops were good.  Don't get me wrong.   The conversations is what I'm feeling too.   It's great to be with like minded people and therapists that understand and believe in us.  I want to keep going.  I do.   But I feel too stimulated.   I feel like I'm telling my story over and over again.   Like it's squished in a book that nobody refers back to.   They all have the info in front of them, but they didn't look at it before we cane in, so I just tell it again. The smell of scent is strong and the fluorescent lights bother my head.  There isn't anyway to get out of the stimuli.  I do have a break, but where do I go?  There is not anywhere that we can go to just sit and rest during the break.  I'm not sure I can go on and continue to tell my story again and again.   The therapists look nervous when I talk to them.  I'm not sure this is right for me.

During group session we went over smart goals and what makes them attainable.  We are over achievers and want to be profectionists.   We need to make our goals smaller and more achievable.  Then we reward ourselves with the end result.  We also spoke about sleep hygiene.   Keep ourselves in routine and don't use our devises.   Easier said then done.

A group of Manatawague came yesterday.   They'll be learning with us.   Sitting in on our group sessions and then following some of us around.   I'm teamed up with a social worker.  It'll be good for her to learn all about me.

Day 1

I survived day one.   Got a parking spot nice and close which was handy.  Met the other fellow participants.   There are only 7 in the group.   I'm glad I ended up pushing myself in because if I were to be waiting and then finding out at the last moment I got in I would have been more fearful and full of anxiety.    We did an orientation to the program and then took a tour.   The hallways all look a like in the building so that will be a challenge.   Everyone got their schedules on what their week will look like.  We're together for the first 2 hours every morning and then break off into or 1:1 sessions.   Tmrw I'm seeing the Physio and Kinisiolgist.   Thursday is the psychologist and OT.   I feel that those are the most important in my team for my goals.  We talked about the pain cycle today and grieving our former selves.  I can relate and just wish that I too could be who I was.  I listen to myself talking in group about what u r done.   If I could still do that.   I would be amazing.    Now I can't even get out of my car without a tear in my eye.  I had my appointment with Mark in social work to debrief the day and keep my steady on a forward track.

We will see what tmrw has to offer

Keg

I went out to the Keg with Coworkers last night.  It was just a really good way to say farewell.  Low key and real.   Friends gathered, ate, laughed and hugged.  They showered me with relaxation gifts and cards, which was unexpected but fantastic to receive.  It made me feel special, like I belonged to something more important than child welfare itself.   Tea, slippers, poems, blanket, and cards will be well needed as I endure the next few months.

I hasn't completely sunk in what I'm about to do.  Maybe because work was chatic right until the bitter last second.  Or maybe it was because I'm just pretending that Monday morning will be typical Monday without change.   Whatever it was, I'm not ready for it.  I'm getting my room ready for it but not ready.

Ready or not, it will come.

Job

I love my job.   My heart loves my job.  Just like other large agencies, there is parts that are better than others.  However most people think of crazy for feeling sad and emotional about leaving.  Maybe it's because I don't actually want to leave.    I want a break for a week or two to recollect my thoughts and lower my stress.  But I don't want to leave.   It's where I feel I belong.  I'm part of a group there.   I have friends and colleagues there that I can joke around with.   I feel supported there by my fellow peeps.   It's been ripped out of my hands like paper.   It hurts loosing something you love knowing that your physical body isn't able to keep up with the need.   It hurts knowing that most likely I want be able to go back to it.   I connect well with people and the sense of lose is great on my future shelf.   I grieve the healthy me that had the opportunity long ago.   I call various aspects of my life stupid now because of it.   The stupid spider bite, the stupid fall, my stupid leg and foot and the stupid brain that I have.   It's the way I cope.  Welcome to the new me.

Focus

Focussing on me is hard work. Resting his hard work.  I find it difficult just doing nothing. You're so much that I want to do so much together so much heart to help out. I know that help is needed in my heart wants to do it. But my mind my body or just shutting down. It needs rest. As I go into the fall I feel it is this time for me to focus on myself and get better. That is my job and I know is that I need to follow my doctors rules and  suggestions. It sucks it hurts it's emotionally disastrous but I guess it's something I just got to do. Finding coverage is hard putting everything in my brain into places hard. I just want to make sure that everything I know gets passed on to the new people. What if this happens what if that happens. What happens if they call and I'm not in a cognitive mindset to be able to answer their thoughts.  I know you're not supposed answer it to begin with and they're not supposed to call but I want to be able to help to be there to guide and just to make sure that my family succeed. I just started a new medication and it's really starting to affect me. The serotonin syndrome is real I didn't think it was but it really is. Going off one med and starting another is hard work.i've gone through the withdrawal symptoms and no I'm in the height of it again. To end it's going to be a fight Song Sunday. As the dizziness and nausea SNES go around I feel like the hurricane in southern Florida. I'll just close my eyes and dream of better days listening to classical music that my friend recorded on his piano. That will make the day a lot more doable.

Chronic pain

I  found out just before my summer vacation down south that I was admitted into the chronic pain intensive program at Saint Joe's rehab hospital. This intensive program runs 9 o'clock to 2:00 PM Monday to Thursday. It starts September 18 and allows me to sit in on sessions both group and individual with a various therapists and specialist to develop a plan to assist me in my daily life.   Although looking forward to the program I'm a bit apprehensive as well. What happens if it doesn't meet my needs. I've already been part of the piece that program and have not had much success in it. I have been discharged by therapist who should not have discharge me. Upon speaking to my social worker about this he suggested various alternatives. My physeal 30 try to get me into the intensive patient neurology program which I should qualify for. My daughter does Not think that's the right route and she due to chronic pain first. I feel like I'm stuck in the middle like a ping-pong ball waiting for another disaster to happen. My legs and arms hands and feet go to sleep so often I've been dropping things and falling numerous times. I'm scared about what the future hold and how I will adapt.    My other doctor feels that I should do another chemo regime to keep my body at bay. It seemed to help last time so why not give it a try again. It's just so easy for them to say. The occupational therapist and physical therapist to work together to develop a plan on how I will succeed and keep my balance at bay. Forms will be filled out for walkers and canes and I'll Be taught how to use them properly. Part of me thinks it's just another thing in the daily routine of life and part of me thinks why me. I know I have the support and team on my side the cheerleaders cheer squads waiting to be developed. I know I hurt. I know the fight must go on. It's just how much longer can won manage this.

Meeting my new Neurologist

I sometimes feel that I'm seeing every specialist that works in the city I live in.  I have too many to remember their names.   However with each one checked off the list, there seems to be a connect through all of them.  The intake initial appointment takes such a really long time.   This one was no different than the last.   As you walk into the unknown land of the office, the eyes of the secretary glancing ever so slightly at you, as they continue flipping through their work.   As you fumble with your purse, digging out your wallet to locate the free health card, you realize how quiet it is.   There are a few other people in the room, silently flipping through old germs magazines. You go to the wrong desk, without looking up the first tells you to see the second, as if you couldn't read the sign as she doesn't even look up while doing this.   The second takes your health card, stamps the file she finds on the pile, crosses your name off the long list and tells you to sit.  You shuffle your foot as the rest of the office glares at you, knowing your the new gal on the list.  Getting called in, a few minutes later and talking to the intern as she proceeds with the pokes and priding.  As you co tiniest to fail the tests, getting more dizzied than you were before she asks if I'm sure you couldn't feel that or see that. Her worrisome face was know as she needed to work on her facial expressions.  Your asked to sit back down in the waiting room as theft will eview the results. Waiting, 5,10,20,30,40 minutes you begin to catastrophize the thinking.  What is actually happening in there.  You try to kill timing by texting friends but their at work; where you are suppose to be!  Then finally, the dr calls you.  He had reviewed the file, did more tests and tell you the dropping words: peripheral neuropathy with over ex outed reflexes.  He discussed changing anti depressants, to one that assists more with pain but also assists with anxiety.  Agreeing- he writes a letter to the family dr.  He also orders a nerve conduction test of your legs.   The dropping words were that the MRI showed a bit of lessons which is the start of the MS diagnosis.    Continuing with the trend, requesting that physio is followed up he closes his book and the appointment is over.  This was August 16, 2017

You go back to work overwealmed, and broken.  

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