Seating Problems

I feel like Goldilocks - I want to complain about seating.

I have a very sore right hip and leg right now. I can't get comfortable.  The couch is too soft, the reclining chair is too hard the other chair is too low.  I am putting a pillow under my behind on the upright recliner and I have a small rolled up toss blanket behind my back to make things tolerable.

A few years ago. when I had so many issues with my left side. I was having a different set of seating issues. How do I sit down? How do I get up? How do I keep the chair from tipping over?  The chairs needed to be very stable because I was not stable and tending to loose my balance. They needed strong arms for me to push off on. If I sat on the couch I needed to be in the right side corner so that I could  have that arm to help me up because my left arm was not strong enough to get me anywhere.  I wanted the chair  or couch to be on the left side of the TV or where ever the action was because I was seeing better out of my right eye and frankly was recognizing movement better with my right eye due to some lingering left side neglect. I found that I would go to group events and I constantly got given a seat all the way to the right of a long table. I found not only did I not see the people on my left side properly.. I found I had trouble hearing properly from that left ear too. In particular I had trouble discerning whose voice was whose. I tried to turn my head to correct and that just made me dizzy and nauseated.

I find the same thing happens with my stroke friends and other people I know. Seating is undervalued.  Individuals have their own interests and needs and it takes a little effort to accommodate them but the seating can make all the difference to a persons enjoyment and comfort and I would even say their quality of life. 

People like to be near their friends, People like to sit away from people they don't care for. Some individuals like to sit close so they can get a view or where the best lighting it and others like to sit close enough to hear the best they can.  Music systems with their amplification might seem great for people with hearing loss but their hearing aids might react badly to the louder sound range and those individuals not only want to be far away from the amps, they want to be out of the room!

What chair feels good? Is this wheel chair easy to move? Can we get a comfortable cushion for the wheel chair seat? (they are unbelievably expensive) 

How about a bed that is at the right height to get in and out of with comfort and maybe a grab bar to help the process?  Clothes they will not get caught up when you are trying to slide in and out might be helpful.

My former physiotherapist spent a few of our appointments teaching me how to drive a scooter. It was kind of embarrassing and fun all at the same time. She ran ahead of me in the hospital hallway yelling.. "Beginner driver! Get out of the way!" I was not talented at going Rabbit speed or Turtle speed which were the two options on the scooters. She said I better work on recovering fast and walking again because I was not a safe driver. Considering my vision issues at the time it was brave of her to take me out in the public!
The fact is the scooters and powered wheel chairs have a lot of different options, and for some people they can provide so much independence and freedom. Potential users do need an opportunity to learn how to use them properly and safely and the vehicles do need to be physically a good "fit".

We also can try and work on exercises to help us in recovery and in maintain  our strength so we can get out of those chairs. Yes.. that is what I have to do again- I have to work on getting my back and hip stronger according to my current physiotherapist.

I will work hard at getting stronger again  but I might just need to purchase a different comfy chair.

Music and Brain Injury

Last night I was reading a post on a Facebook board for Therapeutic Recreation directors asking about how best to use music to help people who have had traumatic brain injuries. I actually got kind of worked up reading the responses. I felt that people might not be recognizing the difference between the needs of people experiencing dementia and those with TBI. 

I wrote a short answer to that post but really I have a lot to say on the topic. Music is so much more than entertainment. It is part of who we are, a part of our experiences and what we remember. It is what some of us marched to, what we danced to at our weddings, and what we sang as we rocked our babies.

I have always loved music and grew up with it around me. My dad played piano and I started piano lessons when I was in grade two. I was always singing and I even met my husband when we were both members of our high school choir. Our four children all took music lessons and I can't begin to add up the hours of lessons, and concerts we took part in.

After I had the brain injury I developed a love / hate relationship with sound. Music and sounds had a horrible effect on me. I was very easily overwhelmed by movement and noise. The sound of music made me nauseous and dizzy and any kind of beat seemed to kick that constant headache I was feeling into high gear.  The more the music, the less I was able to focus and the more disjointed my memory and thinking became. I cried because I was missing music that had loved and I cried because music had the ability to incapacitate me even  further than I already was.

As time went by my physical and occupational therapists started to do things like adding sound and music to sessions and trying to get me to tolerate the music. A lot of therapy for dizziness is in the category of .. " You are not going to like this.. but we are going to take you to the point of being dizzy and then back it down a bit so we can build up your tolerance. Don't worry I will jump out of the way when you start to throw up!". Yes it is absolutely that horrible and you have to keep going back over and over for more torture, also called VRT or Vestibular Rehabilitation Therapy, if you want any chance of having a life outside your bedroom.

Gradually music, in small doses, became one of  my greatest therapy helps. I started guitar lessons and I am sure I would not have regained such full use of my hand if I had not worked so very hard to get my hand moving on that guitar.  What I did not realize at the time was what a big impact the music was having on helping me recover some of my cognitive skills, especially my memory and sequencing of tasks.

My husband and I joined a community choir and there I was - out of the house doing something new and something other than therapy sessions. It was social, it was a new kind of learning and it felt encouragingly like a normal person kind of thing to do.

 

As I began my journey toward becoming a Recreation Therapist it was arranged that I would volunteer at the Misericordia Hospital. One volunteer position was helping with the spiritual care, mainly transporting people, handing out music and singing my little heart out with the residents during services. The other main job was assisting in a group program led by a music therapist who came weekly to the attached personal care home. The music was so powerful in both programs and what joy it brought to the residents!

I must admit that I personally don't do that much with music when I am at work at the personal care home. I have lots of opportunity when I could choose to run a music programs, but I rarely do. I think I value the role of music so much that I don't think I can live up to my own standards for this kind of program. This issue is apparently something I currently need to work on. I either better get to be a better musician or get over my perfectionist tendencies when it comes to the topic. I will have to report back about my progress in the future.

 I wrote in a previous post about singing a karaoke song at an event at the Stroke Recovery Association of Manitoba. That incident was very powerful for me in terms of mental and emotional health. The song I picked from the list of choices was the Beetles song, Blackbird. I was really scared to sing publically but I did it and felt so brave. When I finished there was no missing that I had an impact on the other people there. At first I thought they didn't like my singing or that the song was a bit too much. No, what happened is I had hit on a common emotion and wish for the group. It was what brought us together. We were all longing for the freedom of  having our broken wings fly again. We wanted our broken eyes to see again. To be free.

 

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life- You were only waiting for this moment to arise

 

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life- You were only waiting for this moment to be free

 

The power of music. 

 

 

 

Please note

 I was unable to find copyright info for the pictures this time. If there is a problem please let me know and I will gladly give credit or remove the pictures.

 

Puppy!

The most exciting thing happening around here is that my daughter got a puppy.

This puppy is an adorable ball of energy and my own little tripping hazard. We had two dogs when the kids were little but my two younger daughters, who are still living at home, came after the puppies so they did not know what life with puppies is like.

Emily has been wanting a dog for a long time, but with my heath issues the idea of a new pet went right out the window.  Last year we got a new higher fence around our backyard so that meant one of my requirements of puppy ownership was met. I really thought that my old wood floors should be redone and sealed against puppy accidents but that never happened.

Emily has been researching dogs to find the right one for our family.

• I have allergies to the oil on dogs coats so I need to have a dog that is more the fluffy type.
• we needed a dog that will be good with the grand-kids who are over frequently.
• we needed a dog that will keep Emily company on long walks and fun activities.
• we need a dog to be a family pet and not just a one person dog.
• Emily thinks she wants to show the dog and perhaps take part in things like agility trials.

She found a breeder nearby who had pure-bred Samoyed puppies from champion stock parents.
We visited the breeders at their home a couple of times and were thrilled with the mommy dog and her adorable 5 little balls of fluff.

Two weeks ago the breeder delivered an eight week old little boy puppy to our house.  Life changed instantly! He is very smart and cute and he has won our hearts.

Emily named the dog Jasper and she is working on teaching him the basics like sit and to go outside to pee. He needs a LOT of walking as he is really high energy.

I complained to my girl friend that I can't manage to take a turn walking him because the sidewalks are slippery and the dog pulls on his leash, tugs, bounds and runs under legs. My family is working on getting him to walk nice on a leash but it is going to take a while before he will be safe for me to walk with.  My sweet friend reassured me that I am getting plenty of exercise with puppy by rushing to get him out the door to prevent "accidents" and that sure it the truth. I need to get working on my old physiotherapy exercises and work on my stamina again ... so that I can try to keep up with Jasper.

HAWMC -Day 12 Stream of Consciousness

HAWMC Day 12

Stream of Consciousness Day. Start with the sentence “______”just write, don’t stop, don’t edit Post!
So we challenge you, start with this phrase: “Today I looked in the mirror and…”  

 This turned out to be a very powerful exercise for me. 

I have never actually shared on-line what happened to me to cause my heath crisis, or for that matter what my heath issues are. I use phrases like "when I got sick".

I also have never publicly discussed my serious weight issues. I guess all it takes is 30 days of writing challenges to get me to open up and someone to tell me to just let it flow and don't edit. If I had stopped to edit you would never be reading my story.


Today I looked in the mirror…. and I can't believe I am really sharing this but.. I am looking a lot better than I did before I got sick almost 4 years ago. I was extremely overweight .. oh heck …yes .. morbidly obese, Biggest Looser big.  I tried not to look in the mirror back then.

I developed a critical series of heath issues at the age of 50. Eventually it was shown that my weight probably had very little to do with my illnesses, however one look at me led the health care professionals to jump to wrong conclusions and diagnosis and treatment went horribly wrong.  Yes, my weight put me in grave danger, but mainly because of prejudices based on my appearance, and my own embarrassment and reluctance to stand up for myself. 

 I almost died of a pulmonary embolism and the cause of the blood clots in my lungs was most likely related to a massive undiagnosed uterine tumour. The blood thinners to treat the lung clots caused the tumour to haemorrhage. My blood pressure was dropping and the treatment they chose was to give me medications that rapidly elevated my blood pressure resulting in a stroke according to the MRI results, As well  many, many tiny areas of damage occurred  in my brain because of oxygen deprivation due to extremely low blood volume. Several blood transfusions later I was stabilized, but so much damage was already done.  I was then declared unfit for any form of surgery and it was more than a year of agressive treatment for the tumour before it began to shrink and I was reassured that I would indeed survive.

 I found myself facing a lot of weight related problems while in the hospital. Larger blood pressure cuffs were not available. I needed the MRI and they withheld testing me for a while because they thought I might not be an appropriate size for their equipment. I was subjected to a humiliating set of measurements and it turned out I was not even close to the kind of numbers that would have been an issue and they should never have delayed testing. One nurse said that she didn't have time to go looking for an extra large hospital gown so they left me with only a blanket to cover myself. They kept testing me for disorders common to obese people and did not listen to me as I described my symptoms as acute changes and not chronic conditions.

I am still so angry at some of the medical professionals that dealt with me. I am angry with a heath care system that is not prepared to deal with larger people. Mainly I am still angry at myself for getting so overweight in the first place, and even more disgusted with myself for not being a better advocate for myself.

 I have spent most of the the past 4 years with impaired balance. I am dizzy and nauseated. Guess what?  All that nausea and vomiting and some of the serious medication side effects caused me to loose weight. I was still pretty heavy, but nothing compared to before. Person after person who saw me  told me how I had never looked so good. I had trouble talking, reading and making decisions. I was using a walker. The left side of my face was hanging and my left arm and leg were not functioning properly -- but yes, my weight was down so I looked just great to everyone.

My weight is currently up from that low weight.  I am back to leading a life of monitoring what goes in my mouth and chastising myself for consuming chocolate Easter Eggs when I am  upset. I still have issues as an emotional overeater, but now I know that I have the will and strength to overcome great difficulties.

When I look in the mirror now…  yes I see a thiner woman... but mainly I see a strong brave woman.

HAWMC- Day 5 Ekphrasis Post

Ekphrasis Post. 
Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!

 One of my biggest problems is difficulty with balance and vertigo. I have abnormal sensation in my left leg, and my brain does not get proper position information from my left inner ear so I frequently feel like I am tilting sideways. I spend my days being dizzy and somewhat nauseated and I tend to fall and hurt myself.

Stairs to the vault, a photo by polanri on Flickr.

The staircase is littered with decaying leaves and garbage, and your foot will not feel the solid surface of the step as you lower your foot.

The bricks beside you are crumbing and you can not be sure it will hold if you grab toward the wall in an attempt to steady yourself. 

The dank, moldy walls close in and swirl around you. The descent is out of the light and into the darkness.. it becomes murky and you cannot see around the corner to what awaits you below.

The future is uncertain,

but you have no real choice

except to

keep

going.

 ** Postscript-- My thoughts on a different day.

I opened an email today and I saw the quote below.  I am having a better day, and today this is what I  think about the photo.

"Faith is taking the first step even when you don’t
see the whole staircase." - Martin Luther King Jr.

One Step Towards Driving Again

I really miss driving. I  checked off the box that said "stroke" on my drivers license renewal and not long after I got a letter telling me to surrender my license. In a somewhat confused way I knew I wasn't well enough to be driving but it was such a blow to actually hand my license over.  Being a driver was part of my identity. There I was dealing with yet another type of loss to my mobility.  I hate always asking my daughters or husband to drive me places. Bob comes home tired  after a work day and I am waiting like a puppy at the window waiting to be taken for a ride somewhere. I am really not steady enough to take the bus easily or safely,  and I can only walk so far but I want to go places by myself. I want to be able to run to the store to pick up milk!  

I have had no end of paperwork snags trying to get my license back.  Months after I had handed in my license I received a letter that was a final warning to hand in my license or else.  That was an indicator of how things were going to go between me and MPI, the  insurance and licensing board.

Eventually I felt well enough to try and get my license and freedom back.  I got a health report form to be filled in by my doctor.  My Family Practice doctor filled it in and had no problem with me driving, but he did note in the letter that I had seen a neurologist. The next letter from MPI was informing me that the Licensing  Board would now be requiring the report from my neurologist to be forwarded by my doctor.  Okay -- done.

The following letter indicated that the report from my neurologist was insufficient and they sent me a form for a full report to be filled out by my neurologist.  The only problem was that neurologist, who had only seen me the one time, was now living in another country so it required another set of letters to get MPI to let me be seen by a different neurologist.

We have a huge shortage of specialists in the province. I am basically stable and not medically considered in need of a Neurologist, so my doctor tried and tried to find one that would see me for the sole purpose of filling out a form.

I finally had my appointment with a new neurologist this past week.  He checked me out carefully and seriously questioned if I drove a standard, how I would do with shoulder checking, how dizzy I got with turning my head and so on.  It went reasonably well and the nice man said he didn't see any reason why I shouldn't drive now.  He promised to send the forms in immediately and he said that if I did not hear from MPI in the next week I should call them and inquire about the status of my file.

 I will probably need to do an "in car test" with their occupational therapist before they will consider giving me a license. It is possible that they will require me to start right back at a beginners license because it has been such a long time.

I have been waiting 13 months to see the new neurologist.
I have been waiting a very long time for the opportunity to try and prove my fitness. 

I sure hope the rest of this process goes better.

Summer at the Lake

I am spending a fair bit of time at the lake right now. Cottage life is a real gauge for me of how much I am improving. You tend to not see changes when you are dealing with your day to day life, but at the cottage I am comparing my activities to what they were last summer.  I told a lady at my Stroke Recovery Support Meeting that I was going to the lake and her response was something of a harsh .. "nice for you just getting to relax at the lake.".  It couldn't be farther from the truth. I don't want to spend my days just relaxing,  I want to cook fun meals, I want to chop wood for the fireplace.  I want to go swimming,  hiking and boating and I want to be helping with the work of repairing and maintaining the cottage. I work very hard to towards those goals and I participate as much as I am able.

My cottage is a little primitive to say the least, but it is the place in the world that makes me the happiest. It is the only cottage on a 5 acre island, and is run on solar energy with a propane stove and BBQ and no fridge. We have had the place for 28 years now and mainly we putter with it making tiny changes each summer. Now we are at the point where we are starting to redo the repairs we made when we first bought the place. The walls are creaking, the paint outside is peeling, the floor is slanting a little, and dock boards need replacing.

 Last year I literally had trouble walking over the floor because of a little slant. This year I only notice it when I am overtired. The 5 steps to get in the cottage are a bit rickety and steep but this year, as long as I am holding the rail I do okay. Midnight trips to the outhouse involved waking up my husband to get me down the back stairs and over a few feet of rocky terrain, This year we understand my problems so much better. We have changed the step and added a whole lot of solar lighting and I can cope on my own much to my families "night time relief".



My other huge issue has been getting in and out of the boat at the docks. We have just resurfaced the mainland dock and there is a dock pole in the just the right spot to hang onto. The dock still needs a bit of leveling but having an even, secure surface is just wonderful! Both docks are solid docks, not floating, and once I get up on it I stop and take a minute to stop feeling dizzy from the upward move.  Getting in and out of the dock is not the simple matter of hopping over the side that it once was and now I need a hand getting out, but this year it doesn't involve 2 peoples help. Last year we needed one person in the boat with me acting as a counter weight and supporting my hip and someone on the dock pulling me upward. It usually wound up with me crying and wanting to vomit.

Next weekend I am going to try swimming in the lake again. Last year I got in the water only one time with great difficulty and once I was in the water I found myself unable to tolerate the movements of tiny little waves against my body. 

A couple days ago my husband installed a swimming pool ladder onto the end of our dock. When he  put it in we found it actually touched a flat rock at the bottom so when I climb  down  I will only be in at thigh deep on about a 2 foot wide rock platform.  All the rest of the way along the dock is deep enough to dive off of.  I think the ladder will make all the difference in my being able to get in and out of the water.  When I was doing pool therapy last year my physiotherapist and the aquatic therapist felt it was a safety issue for me so we put a lot of energy into figuring out how to  use a ladder and get in and out of the pool safely using a ladder and not just ramps or steps.


Here is my to do list for next weekend:

• cut up some more kindling with my clippers

• go swimming using my new ladder

• help lay laminate flooring on my screen porch

• do my at home physio exercises

• practice Guitar. (I have hardly practiced all summer)

• play a card game (think cognitive therapy-- still very hard for me and not a lot of fun)

• work a bit on a little craft for Christmas

• If time and weather allows- help husband paint small bedroom OR power wash our huge dock

Linda-- Fall 2010

And yes, I will still find time to lounge in my adirondack chair on the dock while reading a magazine, and we will sit on our screen porch and enjoy a relaxing candle lit dinner while watching the sun set.

Sailing Away - "Able Sail"

I had such an incredibly liberating experience when I went sailing during the Independent Living Resource Center Camp a few weeks back. What an adrenaline rush! It has been a while since I was going at a fast speed like that and I felt like a turtle who got to borrow a set of wings. Basically, I loved it and I am going to get a few free lessons very soon. 

Now, this is NOT an easy thing for someone with a balance disorder, but with issues like mine the whole idea is about challenging your system, often to the point of nausea, so that you gradually get accustomed to different movements. Sailing should be ideal therapy as you move with the wind and the water.

Unfortunately I don't have a picture of me sailing during the camp, but I did find a pretty good video explaining about disabled sailing. I will have to get someone to take a picture of me the next time I go!

"Greatness in not in where we are stand, but in what direction we are moving. We must sail sometimes with the wind, and sometimes against it - but sail we must. And not drift, nor lie at anchor."
                                                                                                   -Oliver Wendell Holmes

  

Check out this website for the Manitoba organization that supports sailing activities for people with disabilities.
Able Sail Manitoba

They do the sailing out of a very interesting nature reserve and education space very near my home called Fort Whyte Alive, and here is their  information about their Sailing Programs.

Shades of Fun Day

 

Thursday, May 26, 2011 is Shades of Fun Day

 

The CNIB, Canadian National institute for the Blind is having a fundraiser and awareness event. Wear your shades, protect your eyes and join in a variety of fun activities in your community, your work place, in your school and at home with your family. They have a good down-loadable resource pack that even has fun things like stickers you can print out.

 

From their web page:

The Did you know?

• 75 per cent of vision loss is preventable or treatable.
• UV rays from the sun can damage your eyes and lead to long-term, irreversible vision loss. Sun damage is also a proven risk factor in cataracts and age-related macular degeneration (AMD), the leading cause of vision loss in Canada.
• Eye doctors recommend wearing sunglasses with at least 99 per cent UV protection to avoid sun damage.
  

Vision issues have touched me and so many people in my life. 

My little 5 year old grandson is vision impaired in both eyes for different reasons.  He is wearing corrective lenses and we are patching his better eye in order to force him to use his other eye a little more.  He is going to play therapy and occupational therapy to teach him how to cope better for kindergarten next year. 

Our little guy is legally blind. He talks happily to me about how he is going to grow up to be a bus driver and I am just praying that he will be able to live a good life in a "seeing world". I am hoping that when he is 16 things will have improved enough that he will be able to get a license and be able to do Drivers Ed with the rest of the kids his age.

  My vision was badly affected when I first had my brain injury but I  have had a pretty good recovery. I still struggle to track when reading and I get a lot of headaches because my eyes do not work together as well as they should so I need to rest my eyes frequently, especially when reading.  A paper back novel is not fun anymore. Technically I only "need" a certain amount of magnification according to a regular vision test, but larger print and blowing up my screen size make a huge difference functionally. I am finding that wrap around sun glasses make being outdoors a whole lot more tolerable too.
I also have had trouble with my peripheral vision but I am lucky because that has come back pretty well. I still startle with anything coming from the left and movement on my left side causes me to feel dizzy and nauseated and sometimes I even fall, but we are still working on those issues.

Check out their website.. it has lots of fun fund-raising ideas and a lot of good information. Then go out and support your local vision health organizations!

Remember to wear your shades this Summer.

Bowling is Fun!

Stroke Recovery Association of Manitoba goes Bowling

Our little planning group at SAM realized that some of our members were interested in having a bowling event.  I don't think we had a very clear idea of what all a bowling afternoon for stroke survivors would entail but we jumped on in and started planning. I called the alleys and found and booked an accessible bowling alley and I made name tags. April and her husband arranged for prizes and a few giveaways,  and Dave and Murray worked out the teams and advertising. Sherry called the bowling alley and got them to donate soft-drinks for our event. Dave also did a bit of video recording of the event.  The price for our event was very reasonable too because we were bowling in the off time between 4 and 6 pm.

We had a total of 19 people attend this past Monday, and everyone seemed to have a good time. We arranged for the bowling alley gutters to be filled with a rubber bumper so there were no gutter balls for us. The alley has a wheelchair ramp and they have a metal gadgets that lets you release and roll the ball down the bowling lane from a chair. We grouped into teams and then we played bingo bowling teams. The objective is to fill a bingo card.. throw 2's 3's 5's and spare and strike. Because we were playing as a team and not looking for a high score there was very little stress and lots of fun and "team spirit". 

There were a few problems for sure and we will be talking about it in the next few weeks.  One thing we found out was that as a group of stroke people we don't have a lot of endurance and we should plan for shorter events when they are active like this. Part way through the event a kids party started on the other side of the room, and the lights were dimmed and we found that we were now playing "glow bowling". In a way it was fun to see us and our shoe laces glowing.. but it made it a bit more difficult for a few people with vision problems. The disco ball and some moving lights also pretty much did in me and one other lady. I had an almost instant headache and started having trouble staying upright.  So now I know that .. bingo bowling is a ton of fun and absolutely no glow bowling for me!

There was a trophy at SAM from a decade ago that was just collecting dust. We are going to have the "team name" of the winning team engraved on a little plaque and we will award it officially to the team members at the upcoming Annual General Meeting.

I think one of the nicest things to come of this event was that several people said they didn't know that bowling was an option for them anymore.  They are now confident that this was a form of recreation they can enjoy with friends and family in the near future.

I went shopping by myself!

Doesn't that sound so basic? "Oh I just went shopping."

I left my house last Monday, got on the right bus, shopped for the few groceries, and then I came home again all by myself. It was the first time I managed a shopping trip by myself in 33 months!

I can not begin to tell you how freeing an experience this was. I knew I was close to being able to do it- I have done a ton of prep work with my occupational therapist recently, but I also have had a few horrible travel and shopping experiences in the past 6 months and I felt pretty scared. Transit systems and icy sidewalks are beyond challenging for someone with balance, dizziness and nausea issues, let alone dealing with visual problems and a challenged short term memory. I screwed up earlier in the week and forgot to buy some needed groceries for my stroke group's Healthy Cooking Event so I felt especially motivated to just go ahead and do it already.

First --- I reviewed everything we had talked about at therapy and I made a plan because "winging it" is no longer an option for me.

I made a written grocery list of what I had promised to take to (SAM) later in the day. Ummm ground turkey, green pepper, red pepper and celery. Sounded doable so far.

I got my backpack so I could carry the groceries home. Do I have what I need to take with? wallet, watch, cell phone, keys, bus tickets, money... oh yeah and the list I just made of what I need to buy (darn short term memory problems)

Next was to get on this computer and look up the bus schedule. I wrote down the next three times the bus could drive me the short distance to the mall. I closed my computer. I next opened my computer again and looked up the times to get me home again.. duh.

I got dressed warm enough in case I wound up waiting at the bus stop a long time in our freezing weather, and I remembered to lock the door on the way out. The bus got to my closest bus stop only a few minutes after me and I was walking into the mall only 15 minutes later.

Now of course something had to go wrong, but for once it wasn't stroke related. They had a whole lot of flowering plants in the floral department and I had a mild asthma attack! I got the heck to the other side of the store, and used my inhaler. I almost called my husband to come home from work and rescue me but after I sat down for a while I felt a whole lot better ... so I got my groceries, paid and got on the correct bus for home.

An hour after I left the house I was back home, dumping my grocery laden back pack on the floor by the front door, and collapsing on the sofa. I rested until my friend Dave came to give me a ride to SAM (Stroke Recovery Association) which is located on the other side of the city. I was exhausted and excited all at the same time. My little outing had zapped all my energy.

It turned out that Dave had to stop at the grocery store on the way to my house to pick the items too that he had promised to bring for our health cooking lunch at SAM. I briefly regretted not calling Dave earlier and asking him to just pick up the items for me, but if I had called him I would not have had my little adventure or have this huge sense of accomplishment.

Swimming Time

My friend and I have been going swimming on the past two Tuesdays.

There is an organization in the city that arranged for one of the city pools to be closed to the public between 5 pm and 8 pm on Tuesday and open for disabled people to come and swim for free along with assistants if needed!

When we went two weeks ago Shawn and I were not too sure what we were getting into but though the worse that could happen would be that we would sit and chat and wait for our rides to come to take us back home. It turned out that I was worrying for nothing. Everything was great. There were not very many people so that made me happy because a lot of noise and movement really bothers me. We changed in a large accessible family area with great accessible showers and bathrooms and then we proceeded to the pool area. There was no wheelchair lift for Shawn. Instead, she transferred to a water proof wheelchair since the pool has a ramp that goes straight into the water. It was so much fun to watch Shawn roll into the water all by herself and basically swim out of the chair! The water is pretty warm at about 83 degrees. We chatted with a couple of other ladies and swam around and this week played with pool noodles.

Shawn and I have the same physiotherapist and he was thrilled to find out that we are voluntarily getting out there and being active. It is so cold right now that it is hard to get out much and do any kind of walking or any other kind of exercise, but this was such a treat to be moving and playing. We are going to try and go every week and I think we have already convinced two more people to come with us next week.

I have a new Physiotherapist

I have had two meetings with my new physiotherapist.

The first one was a conversation about what I want to accomplish with Physiotherapy and about my medical history. I found myself telling my life history and saying that I want to be really fit for the first time in my life. Loft goals perhaps. I didn't manage to pull that off before I got ill.

Meeting number two was added in last week to do a physical assessment in particular the balance assessments. I got kind of upset the night before the appointment and hardly slept. Then I was being really tense during the assessment and I wonder how much that threw it all off. At any rate, I am pretty sure I scored worse than that last time with my former therapist. Maybe he is just a tougher marker. I absolutely know that I am functioning better than I was during the summer and I don't feel dizzy and nauseated anywhere near as often. I am going the right direction with recovery.

I do like the new PT so far and look forward to seeing what the new plan is in January. I also have some plans for getting more exercise in during the New Year.

Wish me luck!

Fire Alarms

It was a busy day at Easy Street with 3 appointments back to back. Each appointment today is worth its own post but I had an incident that really threw me.

We were just finishing up in Physiotherapy and reviewing what I need to do for homework when a fire alarm went off for the hospital. The sound absolutely got to me. I was not panicked or worried about a fire, it was really the physical sound that hit me so hard. I remember saying I can't stand this! I had trouble talking and felt kind of like I was being hit in the side of the head. There was an almost instant pain in my left ear like I had a bad ear infection. It was time to head to the next appointment but the space was kind of locked down so I was grateful to just sit for a few more minutes and try to pull myself together until the all clear bell rang.

My balance was gone, I was dizzy and thought that I was going to vomit. All the people rushing around after the delay was tough to watch too and aggravated the situation even more. My physiotherapist walked me back and it was so challenging I needed her help a lot. It was like the past 12 months worth of work and progress had vanished. We got to the other side offices for my next appointment and my therapist brought me some water and I just sat.

I was pretty useless for the first part of the appointment. I had huge amount of pain in my ear and in my eye by that point and even my face felt horrible. It slowly settled into just a horrible headache and I was able to see better. I think it was close to an hour after the alarm before my equilibrium started to improve and I could focus on my dietician. The cab ride home was hard but I was coping okay right until he decided to back up for several houses. I could hardly get out of the cab and it was another half hour before the nausea settled down.
In the evening after a long rest I felt able to go to Canadian Tire with Bob. I was tired, and still had a lingering earache, but felt okay. I bent over to look at a product tag that was upside down and woosh I was collapsing again.

This morning I am feeling fine, the ear ache is gone, and I am back to what is now normal for me but I feel pretty thrown by the whole experience. I have been doing so well and feeling more confident in myself, but that I could have found myself so miserable and incapacitated with just the sound of an alarm is very disconcerting to me. The world is feeling a little less safe today than it was yesterday morning.