From legs to wheels

As a person with chronic pain we dislike it when our bodies decide to take a nose dive.  We dislike it when the aches and pains get worse.   Instead of it being a once and a while pain, it is a daily pain.  Its when the pain gets worse and fatigue goes down that our bodies react differently.
The way my body reacts is to go completely numb, acting in a paralyzed fashion and the weight that the legs carry falls. 

In March 2017 after a hard fall on the ice, there were many repeated falls.  They turned into daily occurrences that turned into falling four to five times a day.  This is when the chronic pain program provided me with a rollator (Four Wheeled Walker).  The walker kept me upright, mobile and I was able to regain my independence on the things that mattered in my life.   The walker was life changing.   Until it wasn't. 

After having major surgery in June I never regained the endurance and energy that I previously had.  I was tired more often and my head began spinning in the same fashion as when I was falling.  The falls started all over again, but this time with the walker.  They happened both in and out of the house.  However, the majority of them happened when I was out of the house after making a few trips in and out of the stores.  They also happened as I was more stimulated from the environment.  Due to the brain injury once my brain becomes stimulated by scents, visual information or loud noises it begins to shut down. 

After numerous trips to the emergency department, speaking to occupational therapists and physio therapists, medical professionals and my psychotherapist it has been decided that the next logical step is to introduce me to a manual wheelchair.   Currently, I'm using a transport wheelchair to get the feel of sitting.  However, the downside of the transport chair is that someone has to push me all the time.  A manual chair will give me the opportunity to gain more independence again and allow me to go out and about safely without having the constant thought that I am going to fall and end up with another dreaded brain injury. 

There is a lot of consider when transitioning into a chair.  However, the pro's outweigh the con's as I gear up for the transition.   I'm working closely with my physio and OT to ensure mobility continues to happen and I don't let me muscles that I do have go to waste.  Swimming will be top priority too!

I feel like I am not honouring my body during this transition.  I feel like I'm less humane in the chair.  Even though, at the start at least, it's going to be for part time use community use, I feel like I am robbing the 'wheelchair' population.  Conversion Disorder is complicated.   Like why can I walk perfectly fine in the mornings when I'm by myself in a minimal sensory stimulating environment but by the time I go into a stimulating one, i'm a wreck falling 3-5 times an outing.   This past week my legs have gone completely paralyzed on 3 separate occasions.   One of these times happened to be in the hospital, another one in my psycho-therapists office.  Even in the hospital, it was a supportive environment where I hung out until they became alive again.  Scary is a word for it.

I'm being prescribed a Halo Composite a7.  It's lightweight and compact.  Burgundy in colour this baby will allow me to be a new me!     The goal is to use it if I'm going to be taking 15 steps or more in any given direction without a seat in between.

If you see me out and about, please don't make a big deal of it, because it's the eyes and the reactions that will keep me going (or not).

Case Manager to Client

As a professionally educated person, it's hard to see myself with a chronic illness.  I have four degree's and have worked both as a teacher and a case manager.  Then, a vacation of a lifetime ended up leaving work with a bang.   I was once the person who was entering families homes, documenting the area, the personality and the appearance of the person and how I am the one who is having my care team enter my home, having hard discussions than leaving to write pages of documentation about the visit.  It is weird.  There is no other word to describe it.  What are they thinking of me?  Every move I make is being documented on.  The appearance of my house, the various pieces of my world are out on display.   If the dishes are washed, the food scraps on the table and how my clothes look are a snapshot of their records. 

We shouldn't feel judged, as as the client but we do.   We dissolve our lives into the care team, and in return they try to make plans that work for us.  They assist us is various facets and capacities to try to give us a 'normal' life, being able to socialize and stay safe and healthy.  But in the end, what is left is us, feeling violated and judged. 

When you enter a clients territory remember, this is the clients home and space.  The space you are attempting to create safer is the place they need to stare at every moment of the day, and remember the time they were told they could never go down the stairs anymore.  The time the grab bars were installed, the platform lift quoted on and the time the garden needed to become a space for the walker to sit. 

When people look at me, they believe I'm a typical person.  When I tell them I cannot understand their forms, needing assistance to read, and then when writing backwards and upside down their impressions change.  They automatically start speaking extremely slowly and loudly like the tone of their voice will assist in me reading and comprehending.   Then when I tell them my education and the brain injury their looks of concern become helpless.

Remember, my followers, we were once EDUCATED PROFESSIONALS who have lived unfortunate circumstances.  But we will get through this too. 

Children’s book

I have started therapeutic riding as a way to express myself I do believe when the language written expression is not there. Here is the link to my children’s book that I have made to fill in the gap’s of the literature.

What happened to my auntie?

©SamanthaZrobin2018

Purchasing a home

Purchasing a home is stressful!  Before buying, it's scouting out your favoriate neighborhood, what you would like, what you need and what you can afford.   Then it's finding a relator, going to the bank about financing, securing a down payment.  Then working with he relator to find you that perfect house, viewing houses and then making a pro's and con's list about each one you saw!  In the days of technology, you can make that easier by taking pictures and audio recording the rooms as their seen.  Afterwards, meeting with the relator to go over the list....  Once you find the house your looking for, the contract is signed, conditions are laid out and negotiations start!   This can be a stressful process too, as you need to be available all the time to go back and forth!   Once that's settled the buyer needs to meet the conditions, or the house falls through.   It's always a good idea to hire a professional house inspector to give you that reassurance that the house is up to code and will be a safe environment for you to live in.  

This is usually the first expense you will have.  Once the conditions are met, there is usually conditions on the mortgage that need to be met and sometimes conditions on the insurance!   There appears to be a lot of conditions.   The house is almost yours.... The packing either begins once the conditions are met, or beforehand!   The movers are hired - or you will start begging your friends notifying of free pizza for all who help move!

Once your all moved in, the unpacking begins and realizations of what you've owned since college is not longer usable anymore and that tea cup of great granny Jewel's just doesn't fit the décor like it used to!  Hopefully the house doesn't need to be painted and appliances purchased!

However, another kettle of fish is purchasing a home with a disability.  Not only do you need to meet with the relator, there's also medical professionals who can assist you with making a list of things you will need in the house to keep yourself safe!   The physical exhaustion, mental energy and emotional though process is intense during these days.   Mortgage investors want their money, and want to ensure that the person on disability is going to pay them in accordance to their policy.  Letters and extra documentation is needed, the buyer feeling discriminated and violated as their private life finances are laid out in front of them.  Letters are usually written to provide the least amount of detail possible.   There are grants to assist with this, but they come with a cost!  There is always paperwork, upon paperwork, and that is layered with signatures... Just in case.... I need to cover my butt.....   it is unfair and hurtful.   The grants are available in one town, but not the next!   If you need to renovate there is a grant, but not a grant if you haven't been able to save for a down payment because you are just making ends meet.  

The stress headache and physical toll it takes, and then when your brain doesn't work like it is suppose to, you ask the professionals to please slow down!   It's just the start of the day, and info goes in and out constantly.  

Tips: 
- Be your own self advocate
- Explain what you need before you attend the meeting
- Have a social worker assist you with grant forms
- Have a mental health clinician work with you on re-leaving stress
- Check in with your body and listen to it
- Be up front with how your feeling and your financial situation
- Bring an advocate to meetings with you!
- Delegate the work load, packing, and moving!  Sit on the couch and watch others do it for you if you need to!  You can always rearrange later!  
- Ask Questions if you do no understand and to honest!  
- Google will be your favorite tool!

Preparing for surgery

Surgery during an health conundrum is a big deal.  The more surgeries we have the more at risk our bodies are and slower recovery periods we tend to have.   If it’s not emergency surgery then the surgery itself is usually planned a good chunk of time in advance.   The person preforming it will speak about the procedure, benefits and risks.  The patient then leaves the office stunned with the overwhelming amount of knowledge consumed in the appointment.  Usually scared, some need to sit and obsorb before going about their daily routine. If it has hit hard - and you’re heading back to your daily activities think - am I going to be productive and useful?  Should I continue on or should I call in and head home?  Everyone is different and handles the stress differently.  For me, I call in and give up on life.  I head to Chapters, buying a fancy drink at Starbucks and sip away while I browse the trashy magazines and books that I’m too thrifty to purchase.   I then pick up and style the gifts on sale, carrying them around like I own them then at the last minute realism kicks in and I put them back.   On my way home I ensure a catchy tune is on my music selection or a fun podcast is played. Discussing the surgery with your significant other, family or friend last is hard but it helps us to normalize and figure out our go to plan. After hymning and huwing, milling about while getting back into routine we come up with the best decision for ourselves.  Nobody but you can make the decision as you are the ones that will live with it for the rest of eternity.  Making the follow up appointment is next, ensuring a close date.   Usually I find if I state to the administrator that the reason is to discuss upcoming potential surgery the appointment is pushed ahead.  Gather your information, bring your questions and have an “other” attend the appointment with you to gather more detailed facts.  If it’s not possible, ask if the appointment can be taped or if you can write as discussed.  Some Drs will have consents ready to be signed and others will do this later. Once this is completed, a date is set with a phone call a month before surgery usually.   Pre op medical is completed by your GP then your good to go.   A pre admission date is when you can ask last minute questions.  Remember nothing is a dumb question.   At this appointment you’ll discuss your fitness for surgery and be given a time for the surgery as well as arrival time.   Don’t forget to pack socks, ear buds and your phone charger.   It will be ok.  Just breath and practice self care until the day of your surgery.  

Medical Alert

I’ve been tossing around the idea of medical alert bracelets, ID apps and so on for the past few years. I’ve always hated that the braclets show a disability right from the get go, before anything else is known about you.  I’ve tried the after market brand, the sports version and the apps for my iPhone.  The long and the short of it is, is that anything rubbing against me causes my aldonia to act up and pain shoots wildly like a forest fire blowup up a village.   I want to wear my fit bit that does everything for me and that’s it.  I figured with the mes and health risks on my phone, surely to goodness that would be enough right?  I always have my phone with me when I’m out and about so why would I need anything different.  If I went unconscious the mes app is right there easily accessible.  

Last week though I was in a car accident.   I walked away with minimal damage.  However as I scrambled to call 911, I realized that in the flurry of things my phone flew away from my purse and landed in the far corner of the car.  I had to find it before calling 911.  The realization of this is, is that what if I wasn’t okay?  What if the ambulance had to come and take me away?   They wouldn’t spend the precious moments looking for the cell phone.   The possibility was scary that if I wasn’t able to verbalized it wouldn’t have ended well.   Once everything is sorted, I will be ordering that medical bracelet as it really could be the journey that saves my life!

The identifiable parts of disability

We go through life hoping and praying that we will fit in.  We want to have friends, love our families and get good grades.  Sail through our education, get a job and move up the career ladder.   We are normal.  However, what about if we’re not.   These days there is a lot of chatter about invisable disabilities and how important it is to recognize and support people when they look perfectly healthy but are a mess in the inside.  I have many invisible disabilities but within a moment, my disabilities became visable.  The nice thing about invisible is that you can hide it from the world.  When you don’t want people to know, you can curl up and hide from the world.   In the mall, you can fit in with society.   Once the invisible becomes visible the world changes. People can hide cancer until their hair falls out.   Same with me.

The day I got the walker and Foot brace, my invisible became visible.   This changed my perception of myself.  I felt like I was useless, and that the world was staring at me.  It’s hard to go out- and not feeling judged- even when I’m not judged.   The feelings get bolted up in my stomach and anxiety wrenches and one day I explode.  The feelings of judgement, hurt, name calling and slowness live in the back of my mind.   It’s big and bulky.  It’s going convenient and doesn’t fit everywhere.   Stairs and doors are a problem.  Washrooms are a nightmare.   People stare at you with their puppy dog eyes.  Children want to ask questions but their parents hurry them away.   Line-ups, casher’s and carrying things. Don’t work anymore.  The walker appears to be conversation starter-  like I want to talk about why I have it. And talk about the day that my life changed forever.  

I have accepted it.  It’s who I am.  I’ve personalized it to me.  I’ve tried it out and it helped me.  It takes the pressure off my muscles and joints causing me to have less pain and more energy.  It keeps me upright and doesn’t let me fall.   It was the way it was introduced to me that caused acceptance.   The more it’s accepted the more it’ll be used!   Because I accept my disability I can see through it, talk about it and make the not normal, normal!

Just like invisible I just want to be heard.  I just want to go to the mall and be like everyone else.   Talking about how we need to get our eyebrows done and how our nails get chipped needing another pedicure soon with the latest hair styles.   This doesn’t happen anymore though because of the visible disabilities.

Next time you see a person with a visible disability be yourself.  Hold the door open for them or just press the automatic door button instead of staring at them as they walk up and struggle.  As their walking slowly around the mall don’t stream by them.  Instead walk around them quietly without stare.  Talk to your children and allow them to ask their curious questions.   If you teach them young, they will have etiquette for people in the future!

Reading List of useful stories

A continuous list of useful articles I’ve recently read:

Healing through Trauma: https://themighty.com/2018/05/healing-trauma-ugly/

Spoon Theroy: https://youtu.be/tEKWOT420jg

Stages of grief with chronic pain: https://themighty.com/2017/05/stages-of-grief-chronic-illness-diagnosis/?utm_source=Facebook&utm_medium=Mighty_Page

Anxiety and brain injuries: http://www.uhn.ca/corporate/News/Pages/The_role_of_anxiety_in_TBI_rehab.aspx

https://themighty.com/2017/03/mental-illness-sharing-on-social-media/?utm_source=Facebook&utm_medium=Mighty_Page

https://themighty.com/2018/05/effort-trying-to-improve-health-hashimotos-thyroiditis/?utm_source=Facebook&utm_medium=Mighty_Page

Flying with disabilities

Before disabilities hit, flying used to be a piece of cake.  I would arrive at the airport, just in the nick of time, before the cut off through security happened.  I would race through security, and ensure that I had enough time to use the facilities before boarding the plane.  My goal would be to be the last person on the plane, and I would have exactly what I needed in my carry on luggage - and nothing more.  Traveling was fun and an amazing adventure would await.

This stopped as my pain increased, disabilities were diagnosed and I acquired more items that assisted me with daily living.   However, this did not stop me from traveling and flying.  It did however, take more time and pre-planning needed to happen.  After purchasing my ticket online, telephone calls were made to ensure that the airline had the proper disabilities on their records to keep me safe during the travels.  I always disclose my hearing impairment, as I cannot hear the inflight announcements; especially on the smaller turbo jet planes.     Packing was always a joyful mess, because I started thinking of the "what ifs" that could occur.   I packed more medication than needed, just in case I was delayed or just in case I had a pain flair up.   I also packed more clothes, just in case the catheter started to leak or the tubing came out - an embarrassing sight for all whom are around me.   

One also needs to ensure that they get to the airport before the cut off time, to actually stand in line to check in.   Once given notice that they have arrived, going through security is another bundle of joys.  It really depends on the security officer that is working that day, how the process will go.  I usually just follow their lead though, and disclose my disabilities and conditions as the time allows.  This way, they take the charge and the hand of time.    

Airlines need follow human rights codes and ethics need to be followed.  Just follow the lead of the attendant and life will proceed.  Be cautious but not leery and do not let your conditions follow you.  At first, I thought my catheter bag would blow up on the plane with the cabin pressure.  But people stated the direct opposite and it was actually fine!  Flying with an indwelling catheter is no big deal, because honestly, you won't have to get up to use the washroom.  Just remember to empty the bag before flying!

Using the walker and afo right onto the tarmac gives me the independence I need to make me feel normal.  I allow myself to pre board.  Preboarding is allows a mixed bag of tricks.   Flight attendants want to load the plane as quickly as possible, and as such pre boarding is a mess.   The regular boarding people usually end of streaming ahead of me as i turtle walk through the area getting to my seat.  Leaving the walker at the side of the plane- I always say a small prayer in hopes that it’s there waiting for me on the other side!   Self medicate and with a bit of faith; you too can travel again.  

It will be okay my friends, do not let this stop you - go out travel and have fun!

Discrimination on disability

I hate it when my disabilities get in the way of my life and I get discriminated against. This happens on a daily basis throughout the city. I understand what segregation and not being part of the group is like. Over the past seven months I have been introduced to and used a wheeled walker, AFO also known as a foot brace, many gadgets and gizmos to help with daily living also known as ADL equipment, and finally the indwelling Foley catheter.

The equipment added up to a lot, was cumbersome and bulky. My three most frequent stores are shoppers drug mart, shoppers home healthcare, and Motion Specialty’s. I feel safest at the Chronic Pain program in Victoria Ville Mall, Saint Joe’s hospital, Alpha Court and Nor West  Health clinic.

Everywhere else I go; is touch and go. The Victoria Ville Mall itself and any other stores are full of people who just don’t understand I don’t get it. People will deliberately walk in your face, speed by you and then state I’m late because of the person behind me, slam doors in your face, stare at you, or ask inappropriate questions. 

I am 36 and I do have all of this equipment. However the equipment that I have on a daily basis  helped me in one way or another. It’ll eliminate falls and allows me to be independent and decreases my pain is sensitivity levels on an ongoing basis. I have had medical professionals asked me why I have the equipment and what’s my deal. I’ve had random strangers come up to me and state in a very sloppy slimy voice that’s more like syrup that they’re so sad that this is happened to me,  i’ve also had family members who deliberately and out rightly will not speak to me and ignore my existence because of my chronic health problems and disabilities. It’s not like I like having these things and want these things and they have been prescribed which is why I use them. I have learned to trust my inner strength to continue to move on on a daily basis. I continue to work with my therapist and my circle of support to gain strength and the courage to MoveOn.

A disability parking pass, is another touchy subject.   One  NEEDS to APPLY for this pass, and they are not given out to anybody on the street.  Medical professionals need to SIGN the paper for the pass and there is an agreement that the applicant signs, who has the pass.   When I walk out of vehicles, I may not look disabled, but I am.   It takes more energy to walk into a store, without my walker than with it.  It holds me up, puts less pressure on my joints and muscles and allows me to have energy to shop.  Without it, I look less "disabled" but am definitely in more pain.   Getting in and out of vehicles, I get the "look" all the time, and I give the "look" right back.  I am not using the system, this was given to me by my doctor and occupational therapist because I NEED it.  

This week I was told  that my cognitive ability is like a 12-year-old. As well my reading and writing skills are less than 1% of the population when compared to other people of my age and education level. This hurts it’s like a slap in the face sometimes I just don’t want to be van because of it it’s overwhelming and my insides turn and stick together like glue.   This is when I need my support network more than ever. I’ve become hyper vigilant and wonder who can actually see the me and who could see the person who is surviving. There’s so much to unravel when looking at my brain and so much to try to illuminate when accessing it. The hearing impairment the speech impairment the anxiety the depression the pain this And the that.I am complex I am a challenge however I am strangely and ultimately unique. My tenaciousness and inner strength shine through and that makes me the person who I am.

Client vs Therapist

Going into the Chronic Pain Program, I was a case manager in a highly stressful position.   Due to this, I was leary what it would be like going from a case manager, therapist, to a client.  I was the one who wasn't in control anymore.  The therapist leads the session and the client follows the therapists plans.  

Commitment to therapy is always brought about by an event.   We may be born with a disability,  find an inherited condition later in life, we may be getting older and our joints and limbs do not work as well as they used to or like some of us, we may have succumbed our fate; surviving the illness or accident which brought us in.

No matter how we ended up working with the therapist the outcome is initially the same.   We bring it within ourselves to want to change and have a goal in mind, getting better and back to our old usual self.  

The first appointment is set aside for pre medical paperwork and to get to know each other, ensuring a good fit between the client and therapist.   Although the client may come in with high expectations of the therapist the therapists goal and outcome may be completely different.   For me, going into the chronic pain program I knew it wasn't going to fix my pain.   There is no quick fix for this - however I did have the expectation that it would give me the tools, aids and devices to be able to go back to my old position, as a child protection worker.  

As time went on, the therapists and I developed a working relationship together, sharing our own lives and personal experiences as we worked through the goals, getting to know our personalities and meshing together.   I shared a lot of my current and past live with all of my therapists.  There was one though, that I shared more with; as I felt very comfortable talking to her.  She was my Occupational Therapist and worked with me in the intimate parts of my life.  She was open to discussing these issues, and assisting with them to  hopefully elevate the chronic pain.   We had a good thing going for us, and it worked.  

Ten months into the program I had reached a standstill where the pain and cognitive function were surpassing the knowledge of my therapists.   So much though that they believed the city of Thunder Bay could not assist me in therapy programs anymore.    I was being discharged.   I was flat hearted.  It went to my heart.  What did I do wrong to be discharged.  I didn't understand where this was coming from.  Goals were again being mentioned.  What were the goals and what was the position of the therapist.  Why were they there working with me?   When this was mentioned, I rebutted, but realized that they were doing more of what I needed but was not in the management of the college that they were working under.  

Working on softer discharge plans takes hard work and communication.   It takes honesty and knowing how to react, as we say goodbye to each other.  Even though I'm not fixed and back to my old self, I will continue to strive.   

Pacing and planning

Pacing and planning

Living with chronic pain and sensory health conditions from the time I entered adulthood I learnt at a young tender age how to use my own resources wisely.   I learnt the more I pushed my body the more over stimulated I would become and thus the more pain my body would be in.   The pain would be the onset of the push however in the days, weeks and even months that followed; the one day of pushing could result in a flair up of fatigue, pain, rashes and emotional upset. 

Instead of putting myself through this, my days were properly regimented to ensure a stable healthy diet,  limiting caffeine and sugars, proper sleep, and an organizational schedule that drove my inner world bonkers.   As soon as I received assignments and course outlines I made plans on how to tackle them to have them completed on time.   My fear was to have an assignment only minimally complete and be in a flair up that would last for days.

Reading and typing would be sectioned off into appropriate chunks, meals would be planned accordingly as well.  At the beginning of the term baking and cooking would fill the freezer in singly portioned containers, labeled and stored in the freezer for the busier times in my life.

If dinner parties were held, I would start planning in advance to ensure enough energy prevailed for the actual event.   I would start a week ahead of time with the menu, next day shopping and if I could start preparing the food in advance I would, freezing it however the discharge plan did not come with any more concrete plan then to continue my daily routine as planned out and stress free as possible, leaving times for breaks and sleep.    Continue swimming and attending the day centre's programming.  

My goals and ideals of therapy did not line up with my therapists.    Once I was able to for these words we were able to work around this and plan a successful outcome based program which worked for both of us.  The way I think of it is, going to a dinner party with my prepackaged cookies from the grocery store.  Arriving to the party, handing them over I state, sorry it's been a bad day - would you rather see me awake or would you rather have me asleep but my homemade cookies?

Spoon Theory

Goals and Action Plans

One of the key elements of St Joseph’s care group is goals and action plans.  They are a client-initiated program, and clients come into the program with goals in mind, that they want to achieve.  During the first session, we are taught how to set a goal and how to see it through.   SMART goals are used (Simple, manageable, attainable, reliable and time sensitive) to gain the most out of the goal.   One of my first goals was to get back into swimming. 

Swimming was always a major outlet for me.  I was good at it, which helped when there wasn’t a lot in the world I was good at.   It also let me focus on the strokes, rhythm, timing and the number of strokes done instead of my anxieties.  Focusing on this let me forget the world that I left behind.  I was a new person every time I entered the pool.   I could just be that person for an hour a day, as the strokes became more frequent, harder and less stress induced.  There was no pain on my body as I swam, as the pressure was off of the muscles and joints.  I could pound my stress out on the water, and the water took it at bay. 

Starting swimming wasn’t an easy fight.  At first, in July of 2017, the recreationalist met me after work at the pool.   We took one week at a time, getting me into the water.  At first, meeting me in the parking lot, then at the front desk, then at the pool side and finally into the water.  

We took it slowly, engaging myself towards the strokes again.  In the water we would carefully reintroduce swimming through aqua movements, gentle stretches and soon, as the weeks progressed running in the water.   I was then able to do strokes on my own.  By this time, I was working with Andrew, the kinesiologist in the water.  

He started my water therapy off slowly, introducing 10 laps, 15, 20, until I got to my ultimate goal which was 40 laps, also known as 1 km.   I was happy with this goal.  However, there was a small problem, and that was that the more I swam the more nauseas I became.   I was at the point where I was throwing up all the time and the nausea was stopping me from obtaining the goal.  I would get out of the pool dizzy and sick.  

After an emergency room visit, for hydration we had to go back to the basics and start from the beginning slowly building up my endurance.  I continued to play with the strokes and the timing that year, but in the end, if I did 1 km every time I ended up in the pool I was happy.   Goals are hard to set and upset was even harder to swallow.  But every time we start the cycle, we need to think of the bigger picture, the reasons we have to decrease and realize the reason why we made the goal in the first place. 

Looking at the bigger picture provided me with hope and opportunity to see the future again.   I knew what I wanted to achieve and where I wanted to go – but I still wasn’t sure how I wanted to get there.  

Goals are two folded.  We have a space where we want to get to, however, we need to limber up to get there.  Between successes there will be set backs and failures.  Although my goal was to swim 1,000m I had to start small and work up, then work back and then up again.   Same with when my goal became 2,000m.  I started at 1,000 worked up and then worked down again.  I had to realize that my body was never the swim team body that I wanted it to be.  I had to realize my limitations and listen to the pain that it was in that day.  Consistency was never easy and it went up and down but, in the end, listening is what had to happen.   I stayed at the 1,000 m goal in realization that this was my normal.  I then fluctuated between 800 and 1200 m but didn't go over the 1200, knowing that the next day would be impacted on the day before.   

It was a frustrating year, but with the assistance of my therapists I knew that anything would be possible.  They gave me hope when I needed it most and caught me, surrounding their expertise with guidance.   They also showed me that it wasn’t them that was doing the hard work, it was me. 

They were just giving me the space I needed to work out my issues.  They provided me with the material and the safe place, and I was the one implementing it.  It was me, in the end, that was doing the hard work!   It wasn’t fair, but man, was it worth it.

Chronic Pain Management Program

This program was a lifesaver and is amazing.  It was my saving grace and caught me when I was ready to end it all.   This program is made up of three different entry ways.   PACE IT, PACE IT 2.0 and Intensive.   I started out in the PACE IT program.   PACE IT is at the Fort William Clinic on Tuesdays and the NorWest clinic on Fridays.   The PACE IT 2.0 is at the Victoriaville Mall every Monday afternoon and the Intensive program is Monday-Thursdays 9:00am-1:00pm for six weeks.  

In January of 2017 my physiotherapist, Adam, sent my Nurse Practitioner a note stating that he believed I should attend the Chronic Pain Management Program.   I met with Mark in March, for an intake appointment.  We hit it off right away, as our personalities were quite similar.  He spoke about my work, my home life and personal life.  He inquired about my likes and dislikes and my need for individual assistance.  I was signed up to see the Physiotherapist, Kinesiologist and Occupational Therapist.  I also met with Mark for some brief counseling.   Part of their program is the fitness portion where people attend the Canada Games Complex on Tuesday Afternoons for aqua fit, Wednesday and Friday mornings for land-based exercises and then, when I started they also had aqua fit in a warmer pool Wednesday Afternoons.  

As I was working 40 plus hours a week still, at that point, I couldn’t join any of those programs.  I was discharged from Kinesiology and Physiotherapy right away.  As I did not have any specific goals for occupational therapy, as I didn’t understand clearly what a goal was, I was also discharged from occupational therapy.  I spent the summer weaving in and out of appointments with the team on Fridays.  

I had an hour for the appointment and usually saw them on my lunch break.  I would bring it my extra-large bottle of iced coffee from the local Tim Horton’s with me, turn my cell phone on silent and state that we only had 60 minutes so please let me know when my time was up.   This is how Mark and I started our appointments.  

We identified the goals and he attempted to keep me safe, creating a safety plan regarding suicide intervention.  We identified some eating problems that I was having and suggested ways to eat around them.  He strongly recommended I go off work, as I was appearing to be worn out and out of sorts, but I refused.  It wasn’t time yet I started.

However, after I came back from my parents, after a well needed vacation, I decided that indeed it was time.   I inquired when the next six-week program would be starting.  I was ready and he had me in the spot that I needed acceptance, that I needed to change, as I was ruining my life as well as the lives around me.   I was switched managers at work during this time and things there were not pleasant to say the least.  He stated that the next program would start September 18^th, however, he believed that one was full.  The next would start in November.  I reiterated again that he had me then, he won’t have me in November. 

What would I do with myself for three whole months before the program started, short of going crazy and being my worst enemy.   He did some digging and contacted me stating that I would be in the program starting September 18^th.   I would be receiving a welcome package in the mail shortly so stay tuned. 

My nurse practitioner was Shawn Dookie at the NorWest Community Health Centre.  He was amazing and worked with me through-out this mysterious neurological condition.  He agreed with the decision and was happy to write me off of work, breathing deeply, he managed to keep me alive up until that point!   I received a medical absence from work, for the six-week program.   I submitted it right away to my manager and stated, that although this program was only six weeks it was going to be a journey of self-discovery, and I would be off work for a lot longer.

You see, by then I was falling all the time, hitting my head multiple times, sometimes even in the same day.  I was starting to walk with a limp and drag my foot everywhere I went.  After a significant tumble in my driveway I lost the ability to read and to concentrate on the words that were in front of me. 

My colleagues were reading emails to me, and my practicum student that I had was writing my case notes.  I was literally a downhill basket case.   I was throwing up everything that I was eating and my goal was to attempt to get enough nutrients in me, to last until my next meal.   I would work from 8am to 4:30pm and then collapse into bed, sleeping until the next morning when it would start all over again.  Sometimes I would have to work late, from a mishap that would be work related.   On September 14^th I worked until midnight that night, driving to Armstrong with a colleague.   I then said goodbye to Family Services at Dilico Anishinabek Family Care on September 15^, 2017.

The week prior to the start of the program I told Mark that I would not be attending.  Anxiety had hit the rough in another facet of my brain.  What if nobody liked me, what if I didn’t fit in.  What if I didn’t make friends and the team thought I was a flake.  These were the questions, floating around in my brain.   What if I got lost, as I couldn’t find myself from point A to point B.   Mark then turned to google maps and did a 3D picture of the clinic.  He showed me where to park, where to walk and then what doors to go into.  I couldn’t have a cop out.  I was sold and there was no turning back. 

The first thing we did, after getting our schedules for the first week was to attend a lecture on the pain cycle.  This would be our starting off point.  If we didn’t buy into the program, we would be lost of the shuffle.   All whole team was introduced during this lecture, and stated that if anything else, they believed that the pain was real.   They didn’t need convinced of that, as it was true.   The pain cycle is a vicious cycle of doing too much, not doing enough and putting ourselves in flair ups.  The goal of the program is to learn how to manage the pain as a lifestyle choice.  They won’t decrease the pain, but they will give us information that will assist us in management instead.

I floated in and out of individual appointments with the team, educational sessions with my fellow groupmates and then did relaxation and stretches daily.   We learnt about mental health, keeping ourselves happy, pacing ourselves, various tools to assist us with daily living, keeping our bodies strong, medication and what it is like seeing medical professionals.   I felt over stimulated at best.  There were a lot of people, with a lot of information being thrown at me.  Many people forgot that I couldn’t read, and this was a large stumbling block. 

The team’s goals for me, looking back were how to keep me safe in and out of the program, as well as how to keep me from attempting suicide.  Both were heavy topics however, we worked through them.   The team looked scared when I joined them for individual appointments.  The look in their eyes often had a sappy tinge to them, like they didn’t really know how to help me.  I knew that I was intense, and I came off of needing as much help as I could get.  I even told the OT as we walked down the hallway during my first appointment with her, that I felt like she may be my newest best friend.  

The first thing that Kimberly did, the Occupational Therapist was do a daily living assessment.  When I told her, I needed help with all of the above, she looked at me and stated after I deep breath, okay, we will work on things, one day at a time.  She then introduced me to my actual newest best friend.  A walker.  

She stated that I could borrow it and check it out, see how it worked through the program.   She also stated that it was a good thing, to keep me safe.   I tried it out, and it did keep me safe.  It also decreased the amount of pain I was having.  I could focus more on the topics that I was supposed to be learning about, instead of wondering if and when I would fall again.  I could think clearly and the impact was substantial.  The pain decreased the more I used it as it was keeping me from putting pressure on those joints and muscles.  

The second thing that Kim did for me was she sent me to the orthopedic store for an AFO.  This is a foot brace that will keep my foot from dragging.  In return, I would have a better gait, and not look like I was 80.  She taught me how to care for both, and how to walk without looking at the floor.  As a gentleman once said, stop appearing to be looking for quarters and instead look at the sunshine!   Keep accepted me for who I was.  I gave her a run for her money, but in return, she provided me with a wealth of information.  

Another key player in the team was Stacey.  Stacey was the psychotherapist that I was assigned to.  Stacey worked with me on the dark thoughts that I was having and indenting them.  We worked on controlling my emotions on the day to day occurrences of life.  We chatted each week in depth and honestly about how I was coping in all three domains, past-present-future.   It was challenging, as, as I started the program the neurologist had changed my medication.  

This medication was not working well with me, and my brain was rejecting the switch.   Decreasing Effexor and starting Cymbalta was the worst thing that I could have done for myself.   This is where my anxiety steamed from in the present as I was going through a nightmare and a half, attempting to control my emotions, mood, and keeping my mind at bay.  

Mark and I continued to meet as well.  Mainly we chatted about my likes and dislikes for the program and how I felt being in it.  He called me out of my crap when he felt I was out of line and I either agreed with him or mostly, agreed to disagree.  He challenged me where I needed to be put into line and I responded, in the way I knew how.  We would start each session with the typical, “how are you” and my answer “fine”.  He would ask three times before I actually stated how I was.  

On October 20, 2017 my driver’s license was suspended.   After meeting with Dr. McCloud, the Chronic Pain Doctor he stated that neurologically, there was too much going on in my body.  He phoned me after I got home, to tell me that he was sending the paperwork in and suspending the license.  I was crushed, heartbroken and despaired of anything good.   This was my last form of independence and without it, I was nothing.  

I continued to meet with Mark, Stacey and Kim on a regular basis once the program finished.  There was still a lot of work to be done, and as such, we continued to tackle more of the in-depth issues that I was having.  

Kim continued to make referrals for me, fill out reference forms and be my advocate.  She also continued to suggest daily living tools that would assist me with life.  I brought the list into Motion Specialty and they ordered the equipment for me.   Kim was my safe zone and I knew, that I was her special client.  We worked through change and this is why I knew that she believed in me.  

While Kim took a more hands on approach, Stacey and I worked on trauma-based therapy.  We started to unpack the trauma in my life, and I started to respond.   Through flair ups, emotional upsets, ups and downs, he was there to catch me when I needed him.   He was a good person to have on my side and in return I continued to work hard and ‘white knuckle it’ when I couldn’t take the hard stuff any longer.  

Kim caught me when I was falling.  I was burnt out from work, emotionally and physically exhausted and needed new coping mechanisms for the pain and the injury.   She believed in me, as a person.  I wasn’t a case manager to her and I wasn’t a sick person either.  I was floating somewhere in the middle.  The thing about Kim was she was accepting.  When my social network couldn’t comprehend the illness that was storming through my body, like the eye of the hurricane, she saw potential in me.  

She did not take self-pity on me, she challenged and pushed me on days when she knew I could take it but relaxed the push on more painful days.  The approach was always calming and her smiley, calm and quiet personality drew me inward toward her.   I didn’t realize but we started having an unhealthy work relationship forming and she actually hindered my ability to stand on my own two feet. 

I had her wrapped around my fingers and she did the hard work, when I couldn’t.   She stopped, and we pulled back after the realization was over.   Stacey intervened with assistance from their manager and live continued.  There was planning meetings and discharge referrals.  There were days when I felt suicidal in the agency itself but I knew I could trust Kim and Stacey to walk me through the process.  They were my pillars and I was scared to leave their side.   I was uncertain and unaware of my own inner strength during this time, but the fight was not over!  

Between Kim, Stacey and the rest of the Chronic Pain Management team, they were fairly certain that due to the brain injury and the PTSD as well as work grief I had what is known as “Functional Neurological Disorder”.   This is when brains convert and inflame stress signals and pathways.  Instead of being clear pathways to the brain, the neurological system becomes inflamed and signals get crossed; in my case the disease mimicked multiple sclerosis.   I had muscle spasms, pain, increased stiffness, inability to walk, recognize letters and read as well as write.  My speech became blurred and I acquired a stutter.  My hearing decreased as well as my coordination.  

I was unable to feed or bath myself, remember what to do next and my life was full of adaptive aids to assist me with being as independent as possible.  The shock to my system came on April 5^th when a permanent catheter was in place, due to my inability to feel the urge to pee.   Before this, medications were tried with no success.  During the same time, a hysterectomy was planned on June 4, 2018 due to the endometriosis being inflamed, cysts growing and weird locations and with no help from medications either.  I felt the year of 2017/2018 creeping by slowly and that I was a ticking time bomb ready to explode.  

By then, I was in the depths of menopause and my world was flashing by.   I was feeling the loss of work and my social life.  

After meetings upon meetings, I started work with a speech and language pathologist at St Joseph’s Care group, worked intensively with my physiotherapist Adam at Lakehead Sports medicine clinic, had massages with both Leanne Shuttleworth and Jennifer and continued my work with Stacey at the Chronic Pain program, as well as my therapist from so many years ago, Heather in Ottawa.   My nurse practitioner Shawn was wonderfully amazing.   Every time I had questions or comments, he was there to answer them as easily as he could.  

Graduating from the six-week program and starting work as an outpatient with first the chronic pain program, then the neuro day program, then a psycho-neuro assessment lead to the conclusion that I was not going back to work any time soon. 

During this year, in late 2017, I learnt and implemented meditation and self-care into my daily routine.   By then, reading and writing became a struggle, I was using a walker on a daily basis and I was not the person who I started out being.   How I identified with the world was completely different and how I saw myself in others eyes was a sad state of affairs.  

Although aids and adaptations were provided to me, the problem was that no matter how hard I tried, I wasn’t getting any better and the disease still had no name.   Normal was getting further and further away.   At Christmas I developed a lingering stutter and communication was harder.  I couldn’t read, write or speak with others being able to understand me.  Vocal tone was high or low depending on the day.  This brain injury became more complex, and my body was failing in a completely new manner. 

However, given this, the outpatient portion of the chronic pain program was amazing.  They continued to work with me, until their expertise was so much that discharge was their only option (see Client vs therapist).   I continued to exercise with the field education group at the complex and have coffee with them afterwards, creating new friendships with my fellow survivors!

Hyperlink to chronic pain program 

Accept your fate

Accepting your chronic illness and disability is never easy.  Give it time though, work into it and let it mould you.   Don't attempt to fight it though, this will make you grow old fast.   In April of 2018, I realized after much fight that I would never be able to return as a child protection worker, never less a teacher.   I spent the next eight months attempting to come to grips with this.   All I knew thus far was how to be these things.  My employment consumed who I was.  It was my social life, and it was what I dove into.   I knew how to overcome disability, pain and work.   These were the systems that I was good at.  Being a workaholic and pushing through – being the “Martha” in the equation of life.

What I was not good at was taking time for myself and realizing who I was becoming.   I needed to accept what I had and realize that no matter how hard I worked in therapy, therapy was only as good as the therapist and doctor who preforms it.  They could only give me the coping mechanisms to push through, to adapt my life to the betterment of myself.  It was up to me, to face the hard stuff, and put these tools and adaptations into place.  

The rest, the hard stuff, is accepting who I was becoming and realizing that it is the tools that will assist; not replace who I once was.  I needed to accept this and overcome the emotional and mental block to move forward, surrendering myself to the new me.  In the midst of the transition I lost a lot of good friends in the mix.   

As the intensive Chronic Pain Management Program came to a close, I realized that that the clinic was my safe zone.  I spent six hours a day, four days a week there for six weeks.  I spent more hours speaking to the team over the telephone.  They were my crutch and I relied on my therapists for every breathing moment.  The safe zone is the difference between having others people supporting you and doing it all by yourself. 

I could feed off the attention and encouragement of the team in the clinic much like you can from the enthusiasm of well-wishing line in the roots of a swimming meet. But once removed from either of those situations it gets lonely in a hurry and how much you get through the hard times depended on me.  

At the start of the program I had a solid support network- team Sam that was ready to help me whenever I allowed.  They would jump at the chance to send a text, or a phone call to be there for me.  But as the six weeks went on, and the time after this dragged on, Team Sam separated themselves, as things got harder and more adaptations came into place.   I had to accept fate during this process.

I had to accept that I was not a victim.   I wasn’t going to live life on self pity and misery anymore.  I wasn’t going to wake up and go to sleep crying anymore.   I wasn’t going to be able to do things that brought me so much joy in the past.  Working in child welfare, camping, skiing, kayaking, writing and reading were gone.  These things also defined me to others and to myself. 

I no longer knew who I was and I did not have an identity anymore. The hardest admission of all was realizing that these losses were final.  I was walking with a walker, using a foot brace to keep my foot from dragging on the floor.  Using adaptive aids to eat, bathe and dress with.  Cue cards and apps kept my mind focused when my memory failed and the largest, have the catheter in me and having my urine exposed to the world to see.  This is how I saw and viewed it.  I did use my creative skills to sew a case around the outside, so that it was not as exposed to the world.  Once I did this, I felt more comfortable going out in public once again.  

I had to accept what I had lost before I could find what was left.  What could I do, and what did I want to do?  I started creating new outlets and routines for myself.  I would take time to pray both personally and with friends, joining the prayer team at church.   I could start swimming again during the day and I could spend time outside under a tree, listening to a new audio book.  Puzzles and mind games encompassed my day as much as aids and timers did.  I could still crochet, using the larger grips on the hook and I could bless friends with small gifts.   I could explore new pathways for myself, joining my new “chronic pain” friends for tea after exercise group.  I could be still and be happy being still.  

I could also join in programs that I never foresaw myself joining in before.  I joined Alpha Court Day Centre; for people whom were going through mental health issues.  I joined the NorWest yoga class, I dropped in occasionally to the PACE IT chronic pain program to revisit the educational classes and lectures.  I also practiced these activities at home, surrounded by solitude.  

I did have to learn to pace myself in all of these activities (See plan and pace post)  I could no longer go, go, go, drop and sleep.  My day had to be well formulated and planned out in advance.   Spontaneity was not my strong suit anymore.  I knew if I did, I would pay for it the next day, week, or month. 

It was a painful, loss. Acceptance was so difficult and the framework I had chosen with which to move ahead before and after. I find myself making comparisons between before the onset of the injury when I was healthy and strong and could do anything whenever and wherever I wanted and after the injury had struck when I could do so very little. It was a natural bit of a dangerous comparison. It also triggered feelings of embarrassment, shame and guilt.

Embarrassment or shame because I hadn't always been more than healthy.  However, I was able to control my pain in a way that gave me successful quality of life.  My lifestyle reflected on that. I ate well, never smoked or did recreational drugs and exercised.  Most of the time it was a good life. The losses I felt guilty before.  These were because I wondered if I had done something in my past for which God with settling the score.   I became upset with friends and family who took their lives for granted and viewed myself ‘sicker’ then them.  I regretted the day of the injury, the day I found the pain and these anniversary days soon encompassed my life, and thus, I needed to move on. 

The main outcome of accepting my fate as a disease survivor was the evaporation of the embarrassment, shame and guilt that I had carried. 

I was human and I had emotional and mental breakdowns.  But thankfully, there was the friend, the family member and the therapist who helped pick me up again.   My church was behind me, anointing me with oil when I needed to be picked up again.  Suicide was real.  However, I knew that how deeply I wanted to swallow the pills and end it, that on the other side, this is how deeply people actually cared about me, and knew how strong I was.  

I was alive again, and content with what I and who I was.  It was hard, bloody hard.  However, I was free to explore and test the limits.  If I fell, I got back up again and continued testing what I could and could not do.    I give credit to William Sutherland and “Acceptance is not surrender” novel for this piece of information and criteria as it was the foundation – building blocks for how I overcame my world, that was crushing down. 

One of the successes that really assisted me with my daily struggle was my worry wheel.  This is a wheel that I made, with all my worries coming out of the spokes.   I allowed myself five minutes in the morning and five minutes in the evening to pick a worry, and only think about that very thing.  After my alarm went off, the worry wheel went away, and I started me day all over again.

My life was never easy, and success was along way off.  My therapists always commended me on my effort, the reliability of attending and being fully present, in the sessions.  It was my inner strength and determination to beat this disease that got me to where I am today.  No, I am not healthy.  But I am not sick either.  My mind is in control of my body and it is the stress that fluctuates the nervous system.  The pain scale varies in how much I feel control of the day, and the powers the lay in it.  I am more assertive and more vocal about my health care plan.  I am realizing that I am in control and that we need that in our daily lives.  My job isn’t to contribute to the betterment of society at this point, but instead, to get myself better to a place where I can function!  

Just keep swimming and be kind.  

Welcome

Welcome fellow readers as we bark on an adventure together, learning how we can conquer the brain injury, Chronic Pain, Mental Illness, PTSD, Learning Disabilities and Auto-Immune Disorders together!   Lets first sail back to 1981 where this amazingly talented strong women began her journey in this lifetime.