I’m 54 years old. I’m a home share, caregiver who has 2 people who are mentally and physically disabled living with me as a private contractor. This means they live with me and I care for their health
and happiness, as well as their social and working or volunteering busy lives.
Before cancer and then GBS
Two years ago I went to my doctor for a check up and he sat after examining me and stared at me. “What???” I asked with a nervous giggle. He told me then I needed to go to ER immediately for testing.
I had something seriously wrong. I posted my two care people in respite housing and headed for ER the next morning. The news, I had cancer of the ovaries.
The tests went on for days while I was hooked up to a catheter tube, IV and monitors and getting sick and sicker by the hour.
I finally got a little better 8 day’s later and was allowed to go home which is when my parents arrived from the island to take care of me. I was convinced by them I was looking really bad and needed
to go back to the hospital. The tumour was causing bladder infections because it was leaning on the bladder squishing it preventing full elimination. It was mechanical and there would be no cure but to remove the tumour but they needed to send me to Vancouver
for the surgery, only after the infection was cured and by this time I was unable to hold water or any food and was starving to death. I had gone from my usual, 145 pounds, to 100 pounds. My parents were watching me wither away and die.
After cancer was diagnosed. Dad holding my hand and mom using my phone to take the shot. They did it because they were afraid after I came around I would be upset that they got me to go back into the hospital. Mom said I was like
this most of the month and half before my cancer surgery. Dazed and confused.
The infection cleared and I was rushed to Vancouver by ambulance, a 4 hour trip. Once there I had a DVT (blood clot) in my legs and those went to my lungs causing pulmonary issues so an IVC filter
was implanted in my main vein. Surgery was done to remove the large tumour and yet another behind it that wasn’t spotted in my hospital by the CTs they did.
After my cancer surgery, coming back to life again.
After I recovered some Vancouver hospital sent me back home to recover and start radiation. As the radiation started I was getting better but slowly and started working again. Eating wasn’t easy yet
but small bites of Non smelly foods was ok after months of throwing up daily and sometimes several times a day. I had to rely on peanut butter cookies, crackers and light cheese and yogurt mostly. All in small portions throughout the day. I started gaining
a small bit of weight. 15 pounds and completed my radiation, took a pneumonia shot and then I couldn’t walk right. For weeks I felt stumbling in my steps, unstable attempts at walking backward, then weak in the knees, and ankles. After telling my doctor he
booked me for specialist appointments and of course those don’t happen in a hurry unless you are in the hospital.
My mom and dad home with me after cancer surgery. Taking care of me and trying to help me re gain my ability to eat.
One Sunday morning I booked my people back into respite housing because I knew something was very wrong. By that afternoon they were packed and gone and then I tried to rethink going anywhere and
by eight pm I couldn’t stand up. It was that fast.
I called an ambulance and from ER I was rolled into a room in rehab by midnight.
The next morning I was done, total paraplegic with severe pain, no use of my legs even to hold their own weight or lift a toe and my upper body was badly weakened also with some pain but nothing like
the neuropathy that struck my lower body from the belly button down.
Back in hospital with GBS.
If that wasn’t bad enough my mom was diagnosed weeks before this GBS thing with terminal cancer and given 4 months to live but five days after I landed in Rehab she went into a coma and passed on,
I couldn’t even spend time with her on the phone because she was no good for it and neither was I.
So after telling you all of that, here is the tricky stuff. I suffered
1 severe infections, coupled with starvation and dehydration.
2 took a pneumonia shot because of my severely weakened state.
And 3 had cancer surgery.
These are the usual causes of GBS so one or more of those things would have caused my GBS. Problem was there was so much going on with me before the paralysis happened that many doctors came to an
agreed conclusion the paralysis was a result of the radiation I had just finished. There was no lumbar puncture preformed until 3rd week in hospital. By then there was no protein of GBS in the spinal fluid likely because the attack is usually a 3 or 4 week
event and then it’s done leaving us with the rehabilitation to do.
One year later... (three weeks ago) I finally received a diagnosis based on history, tests completed now and back then and my rate of recovery which is typical of GBS and symptoms then and still now.
After several CTs, MRIs, a bone scan and many other test to rule out back injury and other diseases, this is what I had happen.
Being involved in sites now that invite GBS survivors and inform us of resources and allow us to communicate with each other has made a huge difference for me. I see what others are going through,
some much worse then myself but all of my symptoms are now explained. Not knowing for a year what I was fighting against was the worst. I even had thoughts I was mentally unstable because of all of the symptoms I had when I could only be diagnosed as a paraplegic
with severe pain and hyper sensitivity but no explanation why.
Worst part was my physio therapist. The two I had while staying in the hospital in rehab for the month and half were awesome. Supportive, fun and compassionate and they brought me in one month and
a half from them picking me up with a transfer belt to walking on a walker with a shuffle while finally letting go of my transfer belt. I took a bit of time to trust them because trust is an issue when your 53 year old legs suddenly stop working but I soon
came to trust them and even scored extra appointments with them each day just because I asked and there was space not taken by someone else.
After getting out of the hospital I was admitted to Day physio, only 2 hours a week now after a 3 week waiting period. By this time I fell back in what I was able to do at the end of my hospital stay,
mostly the walk on the walker was slower, more painful now and my hips and ankles felt like they were seizing up. Starting with this new therapist in Day physio at first seemed ok. I thought she was nice but that changed in my first 4 months. I wasn’t walking
as well as fast as she wanted. There was some very painful days and even really good days but on my painful days when tears were happening while walking or doing the machines she started to threaten me she’d Have to discharge me if I Don’t move Forward. The
walk never got any faster or easier and she was showing huge disappointment over it and one day when it was so bad I asked for a break the conversation went quickly to the threat of discharge again. I had tears running out my eyes and snot running out my nose.
It felt like a mile up hill.
This was in my 4th month and for the past 6 months now that threat has been hung over my head almost weekly. I learned to take it and come back to the next appointment forgetting she’d said it ever
but it got so I would never know when it would happen again or she would show serious disappointment in my ability to Move Forward... and I’d have to go home after my appointment feeling useless and unsure I’d ever get any better. She’s the pro right... if
she can’t see it or at least say it, How am I ever supposed to hope for it?
So three weeks ago I went to my physio appointment and I jumped from an exercise table and over to a manual wheelchair to do some leg propelling with her down a hallway. I forgot to take off the extended
break handle and landed on it with my hip letting a yelp out as I jumped back onto the table. I pointed at it and said “Sorry... I got stabbed in the butt by that thing” and I snickered. She looked down at me, sneered and said “Stabbed... pshaaaaw... you got
poked... you didn’t get stabbed, you over dramatize everything” I asked her what’s wrong and she stood back and asked in a sharp voice... “So, are we done for the day?” “Ok” I said and she bolted out of the room.
I was stunned, I went outside of the hospital to sit out the hour and wait for my scheduled handi bus to come and pick me up. She came out of the hospital, walked up to me and started to raise her
voice at me. Telling my whole medical case with her for the past year to all who walked behind her back the whole time. I was cornered on a small piece of sidewalk and the only way out was to run her over with my chair because asking her three times to go
and leave me alone wasn’t working. After she was done all she had to say including “All you did for the first 4 months was Cry!” She left. (I never once called in sick except for a cold because you are not allowed in the hospital with a cold. I never once
sat and Cried I can’t do it... or refused to do anything she asked).
The next day I broke out in excema and yes I have broken out badly 3 other times in my adult life under heavy stress situations and once when very sick in hospital, but, never on my face, inside my
eyes lids, in my ears and mouth causing infections and major swelling of my face and neck. She got me good! My heart rate changed. Waking up in the 100s. I’m usually in the mid 80s. And having SVTs. Those are heart palpitations known to happen with GBS but
not usually a year later. I have had five now and my heart rate goes up to 160 with a BP of 160 over 100. Not my usual numbers even after all I have been through.
After deciding not to involve the police or her boss as many GBS survivors on the sites told me to do because that’s bullying and coercion I tried many times to talk to her about it. She’d excuse
herself by telling me “We have to move Forward” again.
What your therapist can do to you when you are trying to heal.
I finally decided to take another approach, still trying not to involve her boss and raising all hell on her. I asked for her and another therapist to attend a 10 minute meeting after my therapy appointment.
She couldn’t say no. They came in a room and I told them I’d be talking not her. I told her my most hell through this whole thing was her, my swollen excema stricken face was all on her and what she was doing was making me sick and stealing my energy setting
me back with heart issues and she needed to stop or get me a new therapist because I would not stop coming and let this GBS thing beat me.
I even tried to twist my own mind out of it by telling others that In her defence we didn’t even have a diagnosis till just recently. All others said No, her being a neuro physio therapist should
have allowed her to mentally diagnose me with GBS or something very similar when hearing my issues all year rather then her usual comment... “No drama, if we don’t move Forward I will have to discharge you... yada yada yada”... yes, if I dared let her know
I had a sudden weak spot or numbness or felt like I was walking on live wires or was pulling charlie horses that’s what she’d come back with. Not anyone I have told this story to has yet said anything that she is right to talk to me that way or lay threats
over my head on my bad days. Yes the first 4 months was very hard, some days I’d be walking out of breath, with with my hands hurting on the walker and tears coming out of my eyes and only once wanting to stop which she said “No, we have to work past the pain
in or I will have to let ya go”. But why yell that outside now when that level of pain has passed like 6 months ago...?
Anyway, I have heard many on the GBS sites say some people have no idea what we go through. My friends and family get it. My doctor gets it and everyone but this therapist has been supportive, sympathetic
to my concerns and fears of falling and never returning to my old life. How can a therapist do this job with no compassion?
The good news. I have gotten results. The past couple of weeks she has finally started working on my real problems. My ankles, hips and my glutes as well as walking along a counter top sideways and
backwards which is the scariest thing I have done yet and was one of my first symptoms of GBS before being totally paralyzed. I heard the first symptom might be the last to go away. She is nice now, finding new exercises that target those areas and even showing
me stuff I can do at home to go along with my community care approved walking on my walker at home with my caregivers. It’s like she gets it now.
So having said all that, losing my mom that was was the hardest, dealing with my therapist was the next hardest and I just hope I can heal now and get back to my old self sooner then later.
That’s my story and I hope no one else has to deal with people,,, part of their team who can’t get a grasp on how bad this can be. For me it’s my bowels, pain from my belly button down including a
pain labelled as allodynia. It means your clothing even hurts and mine feels like sandpaper rubbing on my skin. No one can touch my legs or feet. I have pins and needles, shocks, stabs, Charlie horses, cramps, especially at night and when standing up. I’m
sensitive to being cold or hot, being too hot feels like prickly heat or burning up. I feel sick after eating, I feel constantly constipated, and the only relief is days apart when things decide to move then it’s a day or two with diarrhea and then back to
feeling heavy in the gut and constipated again till the next relief of the runs. My upper body and hands are weak and crampy, my lungs are weak and I get winded within 6 to 10 mins of walking on my walker. I have contractures in my calves that feel like elastic
bands are tightly wrapped around them, every standing means real pain till my heels reach down to the floor, a minute or two but then it’s ok after walking a minute or so. I’m a year out and my prognosis from my neuro surgeon now with this diagnosis is to
be walking before this year is up... oh I sure hope so!!!
Thank you for reading my story.
