How to describe conditions where fatigue is a major symptom

Merry Christmas, or whatever holiday you celebrate... or don't, I hope all is well for everyone.  Being kinda lazy, lol, but this is an anology of dealing with fatigue.

This is a story told by a woman with Lupus, but it's a great one.  Lupus is isn't the same as MS, but it's got similarities, mainly (in my opinion) that they are both autoimmune diseases and present issues with fatigue - which is what this story illustrates.  I relate best to, "Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to."

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Befitsof Horseback Riding - Part 2

It's probably better that I split this into two posts because of the length of the 5 page paper I summerized.  I found it most interesting that Dr. Meyers spoke specificly about the benefits of riding for people who are disabled.

I also found, in my web browsing, Jacobs' Ladder Therapeutic Riding Center's list of therapeutic benefits of horseback riding.  From their website:

Physical Benefits:

Stretching of tight or spastic muscles Decreased spasticity Increased range of motion of the joints Reduction of abnormal movement patterns Improved respiration and circulation Improved appetite and digestion Sensory integration.

Psychological Benefits:

Improved self-confidence Increased interest in the outside world Increased interest in one's own life Development of patience Emotional control and self-discipline Sense of normality Expansion of the focus of control

Social Benefits:

Friendship Increased experiences Enjoyment

Educational Benefits:

Remedial Reading Remedial Math Sequencing, patterning and motor planning Improved eye-hand coordination Visual spatial perception Differentiation

And, for those not so interested in the mental and physical benefits, but more so in how much a workout you're getting; I found this:  Counting Calories at the Barn

All that aside, I have been truely 'feeling the burn' when I go out and get a horse ready, or even partially ready, on my own.  I have been fortunate enough to have good horse friends to help keep me riding that have been nice enough to get my horse saddled and unsaddled for me... and sometimes helped me on or off my horse.

Benefits of horseback ridng - Part 1

I already had this post going through my head when I wrote "Why horses?".  But, being me, I wanted to find some writings that supported my beliefs.  So, 'why horses' and what are the benefits of working with and riding them?

First site I found was helium.com talking about all the benefits of riding.  One that I have always felt are it's work out of the torso, or "the dorsal and abdominal regions".  Riding horse also definitely engages muscles you 'never knew you had', which is why people are so sore after they're first couple rides.  When I was in to PT this last time I surprised them some with the stength of my addctor leg muscles (which I attribute to years of horse back riding), we also concentrated on my torso because I was literally holding myself up when I tried to ride a little - which still happens when I get fatigued, but that's only been after riding a long ways.  Yes, I use my riding as a gauge on how I am doing physically.  I was surprised to read that "A 140 pound person riding a horse that's walking will burn about 2 calories a minute. The same person on a trotting horse burns 6 calories per minute, and galloping would burn 8 calories a minute. (Incidentally, even grooming a horse helps you lose unwanted fat a 140 pound person burn 6 calories each minute tending their equestrian ride.)"... that would also explain why the majority of horseback riders I know and the ones you see in competion are thin (not meaning model thin - fit thin, I still can't seem to loose my 'baby pooch' belly! lol)  The page also mentioned lower impact exercise and diabetes, but what I found most interesting was the mention that caused "Japanese engineers in 2005 to develop fitness machines that simulate the actions and physical affects of riding a horse."  My PTs I woked with mentioned that they'd heard of such a machine when I was asking about why riding was so good for me last winter. Here's one made in China, Horse Riding Machine.

The PTs, and all the therapuetic riding instructors I've talked to figure that horses are so benefical because of the three way movement, up-down, side to side, and front to back.  I've tried finding scientific research showing the benefits, but it can be hard to find.  Resently, I found Does Horseback Riding Provide Exercise And Physical Conditioning Benefits? in an Equestrian Health article in North Americain Horseman's Association that details research carried out by Micheal C. Meyers, PhD, MS. FACSM who work with Indiana State University and Texas A&M's Equine program.  The factors Dr. Meyers found unique to riding worses is that many riding acitivities, such as to timed events, are an aerovic, though even pleasure riding fits into that category at times.  Then there is the joining of two living creatures.  This "requires that the rider has proper balance , flexibility, coordination, strength, and power skills.  In addition, the rider uses man different parts of his or her body at the same time..."(Pg 1)  Then it goes on to talk about how horseback riders do not get the recovery time of athletes in other sports because ot the care required of the horses.  Over the 14 week testing/training session of college-aged horseback riders who had an average of 40 minutes a day of structured riding instruction during the session, they found "anaerobic power or stmina, abdominal, back and hand strength" showed moderate improvement. (Pg 2) All that said, many participants were surprised to find that other exercises were required to go along with riding in order to truely get fit.  Listed and explained are; stretching exercises, rotater cuff flexibility exercises (to reduce the number of injuries riders acquire to that area), lunge exercises, lifting small handweights, abdominal and inner leg exercises, and aerobic exercises.  At a conference Dr. Meyers presented his findings at, he was asked about there having 'to be some physical benefit to riding', to which Meyers replied, "If you do not ride frequently, or have never riden a horse before, then the resistance experience in riding will improve physical response to a certain level.  For example, disabled riders can benifit greatly from the resistance of riding.  So you can develop a certain level of fitness from riding .  What we are saying is this; the training response from just riding is not high or challenging enough that we can depend upon it to keep us health into the future, to improve us and keep us riding throughout our lives.  It simply does not mee our needs.  Without progressive resistance to improve, at some point, one will plateu or level off i their fitness level and not continue to improve." (Pg 5)

First burn

One of the perks to living in the country is that you can burn your own garbage and not have to have a garbage service expense... except in a drought year. 

My husband (whose credit I give to the pics he took this morning for me too) has been loading up either his car or the truck and running it to the dump all summer.  When it would rain it was mostly at night and not enough to not make us worry about the hay the burn barrel used to sit by, or the tree it sits under now.

Today, though it never rained, there was a heavy enough fog to make things look like it had rained - all day!  So we cleaned out a bunch of garbage and burned small amounts until about 9:30, and again after we got home from running errands.

Can you tell I sent my husband out with the camera and asked for some pictures of the fog and the fire? lol  I really should have looked at the earlier and taken the camera to town with us!  Live and learn I suppose. lol

miracle drug? the 'walking, talking and thinking' pill

A few montha ago my ms Dr. had me start on a new drug - '4AP'.  The full name is 4-Aminopyridine and it is a compounded drug.  What is compounding?  From the website of where I get my 4AP, National Pharmacy Specialties,
               Compounding combines an ageless art with the latest medical knowledge and state-of-the-art technology, allowing specially trained professionals to prepare customized medications to meet each patient’s specific needs. Compounding is fundamental to the profession of pharmacy and was a standard means of providing prescription medications before drugs began to be produced in mass quantities by pharmaceutical manufacturers. The demand for professional compounding has increased as healthcare professionals and patients realize that the limited number of strengths and dosage forms that are commercially available do not meet the needs of many patients, and that these patients often have a better response to a customized dosage form that is "just what the doctor ordered".

4AP also comes in a FDA approved commercial form, Ampyra, though it's price tag reflects it's commercial status.

4AP is a potassium channel blocker that is prescrbed to improve walking and other motor activities.  I, personally, have not noticed a huge improvement in my walking, but have noticed better stamina and minute improvements with my walkinging - noticely helping to keep my my toes from dragging in a manner common to ms called 'foot drop'.  What's surprising is that the first thing anyone noticed with me after I started taking it was an improvement in my speach and cognition (thinking).

Refusing a chair

When I first was getting diagnosed with MS in 2006, just after starting my first job after college, I was perhaps too open with what I was going through.  I'll probably never forget the reaction of one of my co-workers when I announced the diagnosis, 'Oh, I'm sorry you'll be in a wheel chair.'  My grandmother had MS, SHE wasn't in a wheel chair except when we toured Washington, D.C. - WHAT?!  No way am I going to need a 'chair'!!

And then, I decided to have my sweet baby boy in 2010 and everything fell apart with my hips and I went from using my cane outside the house and not at all inside to needed a walker everywhere.  I got a powerchair because I couldn't move anything with the walker (laundry, dishes, etc.) and had a baby on the way and would need it for him.

So, I learned how to drive in my new wheels without completely killing all of the walls, woodwork and furnature - and they all still bare the scars og my learning curve.  Then Cody was born, and I quickly learned I should keep a rag not only on my shoulder, but my chair too.

And he started to try and help me 'drive'

And I depended almost completely on the chair, not leaving the house too often and using a walker, Cody's stroller or somebody's (usually my husband's) arm and my cane to get around.  I was fortunate enough to have some great in-home physical and occupational therapists (PT and OT) come out to the house right after Cody was born too, to get me so that I could start living life more normally again and leave the house.  They typically worked with home bound elderly patients and coming out to work with me and the new baby seemed to bring them a lot of joy.

Last winter, as I wrote about some in my 'Muscle loss and gain' post, I drove the half hour into town and went to regular PT along with some aquatherapy and got a little stronger.  Just going in to town three days a week was therapeutic and strength building in itself!

I make it a point to not include any of my assistive devices in any photos, because I don't want the 'stuff' to be a part of me... and I guess having the assistive devices in photos permantly attaches them to me - in my mind.  But, the thought process that led to this post, I can use the devices to assist me while I need them, but I don't need to integrate them into myself like I have the last couple of years.  Problem is, yes, I'm free walking in the house and even a small amount outside more, but trying to walk one place and have the chair to help (assist) me to move whatever back gets complicated, i.e. to take a full basket of laundry down to the laundry room I need my chair, but I can walk back to the bed room carrying the empty basket, but I need the chair again to get the next full load down to the laundry room again.  So I end up in the chair and not using my legs like I should.

I firmly believe that the more you use an assistive device, the more you relie on it.  I know I am able bodied, but have, in my opinion, used my chair too much and have started to go to that first.  I don't want to be there.  I want to be able to go catch a horse, saddle him (or her) and ride out for a ride like I used to do (several hours) and still be able to dismount and untack my horse.  I *should have* gotten my walker to go out to take pictures of the new water hydrant...

...and the cats and horses.

But, I was already in my chair to take scraps to the cats and went out my front door, rather than the garage where I keep my walker.  Perhaps, I should do like someone (my mother?) suggested and just start using my wheeled walker inside too and mostly abandon my chair. 

One positive, all the horses are very 'chair boke' and Cherokee and his 'brother from a different mother', Patrick, followed me around the pasture when I went in to see what needs to be done this spring.  (wish I had the funds for a wagon and team harness and to get the two of them broke together - they're inseperable in the pasture!)

It was really nice to see that Cherokee, my painted pony I've been putting the most miles on, worked with me loose in the pasture, from my chair, just like he had a lead on and went with me everywhere and would come when he stopped and stood somewhere until I realized he wasn't with me and called him.  Gotta love my goofy little painted pony!

UPDATE: 12/5/12
     I went without my chair for nearly a week leading up to and over Thanksgiving.  I was able to do it, but the stress of not having my chair was, surprisingly, not just physically straining but also mentally, as I couldn't 'just go get' anything - including my son, who's now 2 and into everything.  I've gotten used to having to rely on people more often, though it's still not easy, but then you go for the holidays and add into the loss of independance the loss of your own time schedule, because, and rightly so, you have to wait for people to come assist you.  I think the next post on this will be 'accepting the chair', or something like that, as I sort things out a little better in my head.  Really, what's so bad about conserving energy to do what needs to be done or specific exercises, rather than walking across the room with no aids?



 

Starting....

Ever start a project, activity or, get on a horse and stay to yourself, "What WAS I thinking?!"  Well, horses; there's only been a couple in my life where I got on and litterally prayed that things would turn out okay.  Activities; there's been a few... portaging a canoe in the Boundry Waters in MN I distincly remember thinking to myself I was stupid, several roller coasters of course had their moments of 'NO, no, no, no, NO!', taking off at a dead run on a fast horse... who was faster than you thought it was, and there was the time I hopped in a family friend's fuel injected sprint car you could start with a push of a button and my ever fun family started rolling it with me in it.  Projects; on a regular basis.  Things ALWAYS seem simpler in your head!

My latest project: painting my bedroom set that consists of a dresser, mirror and 2 night stands my parents baught for me before I started high school at an auction, a full bed my mom found in the attic of a place she lived LONG before me, but looks amazingly like it goes with my other furnature, and a book case that doesn't 'belong'.  I painted the book case to learn the ins and outs of painting furnature (did I mention that this is my first time?).  Not a problem, so I started on the dresser.

Here's what things looked like before, I think it was tan with gold trim before we got it in it's white color.

SO, because of it's beat up nature, and the fact Mom painted the bed brown when she had it, I decided to repaint them all... with a blue/green piping the bed used to be - tra le de la da! (insert the 'WHAT am I thinking?!')

Looks good, right?  Now, this is after my dear (poor? lol) husband interviened to get the paint on more evenly because my first TWO coats weren't looking so hot.

Then... this morning I started the piping...

 

Doesn't look horrid from a distance, but then you look closer and wonder what someone with poor dexarity was thinking! 

Taking pictues helps, gives me some hope.  But still going to wait until my PH (poor husband) gets home before doing more so there's less to undo if we scrap the idea.

The horse; pet or livestock?

I've been sitting on this title for a long time, intending to go get a bunch of research to post with this - but I think it's time for me to just write it... as my opinion.

With all of the banter over the horse processing plants that were closed in 2007, and that many horsemen (myself included) are working to get opened back up, if only through signing petitions, sending letters and trying to educate people about what's happened with horses still being slaughtered - but being shipped to Canada and Mexico for it.  I've still have slaughter waiting for a topic, but we'll stick to pet or livestock right now.

So, a web search of what they are officially classified as brings up all sorts of things, including the slaughter controversy, and is part of why I've had this title to write on for a long time but haven't moved forward on it.  I *believe* the USDA still has them classified as livestock, but definitely not a food animal like cattle, but then California recently, to my understanding, took that title off and have their horses 'unclassified' - it's all a jumble, with a lot of emotion tied into it.

Personally, I cannot NOT classify horses as livestock - they're large and live outside, not to mention that they use large animal veterinarians (NOT the 'pet vets' you find in the middle of the city) and you can't keep them in the city limits of them vast majority of towns.  I've never heard of anyone 'potty' training them like you do a cat to use a litter box (well, you don't really *train* a cat, but they prefer a box) or a dog to go outside and even the miniature horses aren't small enough to fit in a cage or terainium like birds, hamsters, and lizzards, etc.  BUT, I also believe that livestock can be pets.  With the way my own horses are treated, I'd say they are pets... or, more accurately, companion animals.  I've also seen 4H kids with their show livestock, be it sheep, chickens or a 1000 pound steer, treating them like pets - caring for an animal, and maybe spoiling them a little, isn't what determines how they are categorized.  Bottom line, in my mind, is that livestock have a job either feeding us or working for us.  In which case, many dogs would be considered livestock as well with all the hearding, gaurd and service dogs out there.  My daughter also shows rabbits in 4H and has to do a quality assurance training every year because rabbits and chickens are considered livestock with 4H, to my knowledge - due to the fact that many people breed and sell them for meat, like cattle.

Chicken legs...

I KNEW there was a reason I usually wear jeans! 

 

This past Labor Day weekend, I had a good friend invite me AND my two kids to go boating with her, so, I wore shorts. 

Let me tell you, those are some skinny, pasty white calf muscles I have. 

I'll leave you (and me for future reference) with some calf building exercises I'm going to start doing.
Best calf muscle building exercises

Wish MS were terminal?

I did - a LONG time ago.  I'd just started running into my 'new normal' of walking with a cane and not really cantering, had just lost my first job after graduating because of the MS diagnosis, had my mother and mother-in-law take my daughter (then my only child) for the summer 'so it'd be easier on me', plus the heavy feeling of that this would always be how it was going to be - hard to live with.  Well, I just saw this story on the 'We're Not Drunk We Have MS' Face Book community page;

MS sufferer rode wheelchair for two hours to kill herself
An MS sufferer travelled for two hours in an electric wheelchair to commit suicide in a canal - after her twin sister refused to buy her flight to the Dignitas clinic in Switzerland.

Carol Hutchins is supported by her stepmother Jane and father Alec after completing the Reading Half Marathon in 1993. She was a keen runner before MS struck her down Photo: INS
7:30AM GMT 24 Feb 2012
The day before Carol Hutchins died, she arrived home in floods of tears after the lever on her buggy had jammed leaving her unable to throw herself over a 3ft fence and into the water.
Determined to end her life, Mrs Hutchins returned to the canal the following day and got the mechanism working to lift the chair above the height of the fence.
The 53-year-old waited until a crew of workmen cleaning graffiti nearby went on a break before heaving her body, which was immobile from the chest down, into the water.
When the labourers returned to the towpath of the Kennet and Avon Canal in Reading, Berks., they found the empty wheelchair and then spotted Carol floating face-down in the water.
Police constable Victoria Blaszko (corr) leapt over the 3ft fence and dragged the middle-aged woman's body from the water as fellow officers, firefighters and paramedics rushed to the towpath.
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Mrs Hutchins, who had been described as a vibrant woman with a "larger than life personality", was taken to hospital where she was declared dead shortly after arrival on October 22 last year.
A post mortem examination gave the cause of her death as drowning.
The Berkshire coroner heard that Mrs Hutchins was diagnosed with MS in 1989 and had taken part in marathons before MS ravaged her body and left her wheelchair bound.
Her sister, Ingrid Foan, said that in July 2010 her depressed sister was unable to do anything for herself and begged her to buy a one way plane ticket to Switzerland so she could end her life.
"She was terrified by what was happening to her," she tearfully told the hearing in Windsor, Berks.
She told how her sister had said that she had "lost everything and didn't want to live like this anymore," and had previously spoken of throwing herself into the canal.
Ingrid explained that after a 10-week hospital stay her sibling's condition had improved and she was able to do much more for herself.
Carol's devastated parents, Alec and Ursula, said they believed their daughter had planned to end her life before her condition worsened further and she could no longer control her destiny.
Mr Hutchins said: "We think she planned it while she was in hospital.
"She didn't involve anyone else. She knew exactly what MS was and what it was doing to her."
When asked whether they thought Carol had taken her own life, Mr Hutchins replied: "I'm in no doubt."
In recording his verdict coroner Peter Bedford said that Carol was suffering from a "horrible" disease at the time of her death.
"From the evidence given to me I am quite satisfied that Carol Hutchins died on October 22 last year at the Royal Berkshire Hospital and that she took her own life while suffering from multiple sclerosis and depression."
Speaking before the hearing Mr Hutchins called for assisted suicide to be legalised.
"Carol was a very courageous woman but at the end of the day she has demonstrated a need for euthanasia in this country," he said.
"People say life is precious but there comes a point when life is not precious and it becomes torture for those that are living.
"Carol had thought about going to Dignitas in Switzerland but it is very expensive and it puts other people in a difficult position.
"It showed tremendous courage for her to do what she did all alone and I believe that she had planned it after having enough of being a prisoner in her own home.
"She knew one more setback could leave her totally immobilised and she wouldn't be able to do anything for herself and she would just be washed, dressed and stuck in front of the television."
Story

All the comments to the story can be seen at: https://www.facebook.com/WereNotDrunkWeHaveMs

Personally, I can understand.  I've only been diagnosed for about 6 years, and most imortantly, I have a GREAT support system who have worked hard to help me keep riding the horses.  I have trouble now feeling sorry for myself just with the amount of help people give me to keep me riding.  In the last month alone, I've been literally drug off my horse to get me on the ground about half a dozen times.  But, on the plus side, I have people who don't mind doing that for me and have over 100 miles for the year in the Distance Derby!

Long time no see

I was going to post regularly earlier this year, but it didn't happen.  I've got several posts at least titled, that's a start, right?  No.  It's 11:30 here, but I WILL get going tomorrow!  See you then.

More falling... only off a horse this time!

First time I've hit the dirt in at LEAST 10 years, I believe, and the first on Cherokee (other than a boggled attempt at doing maneuvers I didn't understand when I pulled him over on me).  Which, is just another lesson in the fact that I can't ride more than about 50 minutes, or a mile and a half, without taking a break. As my body was protesting the fast pace of the ride last night, I thought I could just hold Cherokee back and wait for the riders to come back. He didn't want anything to do with it. My upper body gave out completely and I lost the ability to whoa him and school some with the lessons we'd learned to keep his head on what I was asking.  So, we were traveling at Cherokee's command. When I could no longer sit upright, and fell on the horn, Cherokee took that as a sign to canter and catch up with the group. Then I came off.  The other riders got Cherokee caught and me back on and the lady I trailered in with rode back towards to trailer with me.  All the horses seemed a little high headed with 16 riders on a ride this early in the season, so I really doubt it would have changed the outcome if she's stayed with us.  Cherokee also had his first time kicking back at a horse on a ride - before taking off with me.  Fine, but I was still having troubles with my body and we opted to stop and get me off on the south side of the road we'd come under while she went back to the trailer and called one of our husbands to come get me. In the mean time, I waited until the trail ride came back to where I was sitting. One of the riders (on a gorgeous Morgan!) knew my trailer friend and had spoken to her on the phone and said her husband was coming, but, it'd be good if we could get me back on and to the road. SO, back in a saddle I went.  So thankful for the nice gentle man who hoisted my malfunctioning body up into the saddle twice!  Anyway, they got my 'dumped off' on the other side of the bridge by the road ('no, I don't want to be closer to the road to wait' - did I mention that my T-shirt caught on the saddle horn as I came off?!) and I waited again, this time for the truck with my friend's husband.  He came and picked me up - not literally, because my legs were mostly working again my then.  Lesson learned for the MSer who'd prefer not to make accommodations and inconvenience people (after she got fired for trying that with her job); once you know your body's limitations, speak them before riding out with a group of people and see if they're willing to do what you need, and if not - go home.  Too bad I didn't realize how 100% needed my rest periods were before I had to eat dirt, and I KNOW me coming off was more of an inconvenience than if I'd just spoke up before we rode out!  Some things (people?) seem to have to be learned (learn) the hard way though.

COWGIRL WISDOM

COWGIRL WISDOM: “Don't wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now. With each step you take, you will grow stronger and stronger, more and more skilled, more and more self-confident and more and more successful.” Mark Victor Hansen

Extremely fitting after my adventures last night.  I had planned my leave time around when I needed to go from my place to the State Rec Area (SRA), but called my friend to see if she was coming too before going out to catch my horse - her truck was with her hubby.  Well, been meaning to get down to her place for at least a yr now (maybe 2?!), so why not go pick her up?  Mind you, I've been proving myself to be more and more directionally challenged over the last few years (don't know if it's ms related or simply passing 30, lol).  Yep, thought I was doing good, but pulled into the wrong place and then got myself turned around back a$$ backwards following her directions over the phone (What DID we do before cellphones?!).  Go west?  'Oh, that's to my right', my head tells me... you know, head is north, left is east, right west....  Wait a sec.!  That doesn't even make sense with the cardinal direction's 'W-E' when reading maps!!  Dyslexic?  No, at the computer too much.  I'm facing south at my computer, and west is out the window to my right - goodness!!

Anyway, I picked up my friend, eventually and we ended up being an hour late for the ride.  Went to empty my bladder in the trailer before hopping on my horse, and fell.  Bare assed onto the dirty trailer floor!  UGH.  Okay, got bridled up - eventually.  (Last night was another lesson in just admitting needing help and ASKING FOR IT, btw.)  Mount. Nope, feet said enough, and wouldn't pick up.  Finally asked for help and got on my horse!  Had a nice hour ride in a new location, with two new friends and an old one. :-)  Asked for help much more readily dismounting, and nearly fell on my butt again going to sit on my mounting block.  Lots of laughter though, and I actually can say I'm starting to enjoy the calamities that comes with the ms.  Maybe not enjoy, but at least be able to laugh at them with other people.

Thanks Leigh for getting a picture! :-)

Why horses?

I have SO many things that I have written up\started in my head, but this one jumped out at me and caused me to pull up my page.

Growing up in a non-horsey family, I was always looked at (or at least perceived myself to be looked at) with some skepticism and misunderstanding.  It was (is still) perfectly acceptable for family members to put up their hobbies as excuses to miss events, but riding - rarely.  Going out to 'play' with your horse was seen as just that, playing.  The other non-horse riding members of society seem to have the same views.  If you are going out to ride, you're just out playing around.  Jobs focusing in on your horse knowledge then, also, should not have to pay you as much, of course, because you're just playing and therefore not to be taken seriously.

Why do it then?  It's strenuous, hot, dirty and potentially dangerous.  I'll tell you why, for the vast majority of horse back riders, if not all, it's in our blood.  Speaking for myself, I cannot think of any other place I feel the most 'connected' to earth, nature, God, than on the back of a horse - or even being around them.  I hate speaking in front of people, always have, but if I've got a horse beside me, an inner strength is found and I draw upon the horse's presence.  That said, and to hint at a future post, I do NOT view horses to be 'super natural sentient beings' to be put above any other animal.

As I loaded up my horse's tack we'd taken out of the trailer this weekend, I had to ask myself why I was doing this and could see where the non-horse inclined population might view people like me as being a few cards short of a full deck.  I'm hoping to head out tonight (barring inclement weather that seems near according to the weather guesser and with the thick, humid air) for 3 reasons.

1. To socialize with others who're short the same cards I must be... though let me put this thought out there, perhaps our 'deck' is not short some cards, but we have more than the average 52 card deck.
2. To exercise and do therapy for my ms ridden body.
3. To keep my horse in shape and 'on task'.

I really cannot think of better exercise than riding a horse... to be covered in a later post, as I know I need to rest some before going out to catch and load my horse before my neighbor gets here to watch Cody until my husband gets home.

(btw, My horse has chewed on his tongue since the day I met him - 16 yrs ago! - I'm not THAT heavy! rofl)

Sneaking in a ride

Despite the MS and not being able to ride for a long time, and having the baby and just plain not having much time, I am really making a descent 'run' with the distance derby.  Amazing how a little competition, even if it's just with yourself, will motivate you.  Currently, I'm listed as 46th out of 70+ riders.  Not bad considering my circumstances!  Last night my husband called and said he hadn't had much work and was hoping to be home by 4:30, so what do I do, I go change into riding clothes (*not* my PJs I hadn't bothered getting out of all day since I had no where to go!) and wait anxiously for Nate to arrive to trudge out in the 8?+ inches of snow to catch me a horse and saddle him.

 I had him grab Clue so I'd have a nice, easy ride before it got totally dark.  

In using a GPS for the race, I found out that Clue's trot is twice as fast as Cherokee cantering (slowly so I can sit it easily) and it's still more comfortable to ride!

Our sats from our quick sunset ride were;

Distance: 1.09 mi

Time: 31:53

Moving Time: 25:25

Elapsed Time: 31:53

Avg Speed: 2.1 mph

Avg Moving Speed: 2.6 mph

Max Speed: 13.4 mph

 

I rode Cherokee the day before, which was the day after our Nebraska February snowstorm and just totted for the fastest we went (mind you, I am now a pretty much walk only rider), but here's our stats from Sunday;

Distance: 2.57 mi
Time: 1:25:32
Moving Time: 53:45
Elapsed Time: 1:25:32
Avg Speed: 1.8 mph
Avg Moving Speed: 2.9 mph
Max Speed: 4.7 mph

Sunday would have been my grandpa's 98th birthday and we got around 10 inches of snow.  There was no going outside for anybody for the most part of that day, though our neighbor came and cleared our driveway in case of an emergency.

Snow used to be fun.  I loved going out in it during winter breaks or helping out feeding all the horses and cleaning stalls at the barn if school was called off due to snow.  Now, I have to seriously consider what and where I'll go if I'm wanting to go outside with snow.  I'm lucky enough to have a husband who'll saddle my horse and bring him to the driveway for me to get on.  We are already talking about how and where we'll put sidewalks in around the place too.

Skewing surveys

Just finished a survey that was posted on my ms20something group-

     Posted by: "UCD Chronic Illness Study" ucdchronicillnessstudy@yahoo.com        ucdchronicillnessstudy

     Sun Feb 5, 2012 2:02 pm (PST)

     Hello!

      You were recently invited to participate
      in a project designed to increase understanding of chronic illnesses.  We are writing to request your
      participation again in the following study:

      Predictors of Disability and
      Acceptance in Persons with Chronic Health Conditions in Internet-Based Chronic
      Illness Support Groups (COMIRB No: 11-1278).
      This study is being led Abbie Beacham, Ph.D., at the University of Colorado
      Denver.

      The study involves answering a series of online
      questionnaires designed to increase understanding of chronic illnesses.  We are
      inviting participants (age 18 and older) who have been and are currently
      experiencing a chronic illness for at least 3 months to complete an online
      survey. It is anticipated that this survey will take approximately 30-45
      minutes of your time to complete.

      In addition, we request that you
      forward/share the survey link to other individuals with chronic illnesses who
      may wish to participate in this studyso that they may have the
      opportunity to assist us in gathering information about chronic illnesses and
      online support groups.
      Please click on the following link if you are interested in
      learning more about the research study:

      https://www. surveymonkey. com/s/JFYG77J


I wonder how much me being an equestrian messes up their results? lol  'How often has your illness interfered in activities you would like to do?'  Um, all the time because I would LIKE to go galloping across the fields like I did as a kid!

Falling

I saw this quote on a friend's post on FB today, and couldn't help but think of my 'meeting with the sidewalk' I had last week.

...To dry my eyes and laugh at a fall,
and baffled, get up and start again...
Robert Browning

'Pre'  my MS diagnosis, I typically reacted to injury with laughter and some comment about how silly I was.  Now, I break down into tears at the simplest finger in a door, electric fence jolt, or a fall.  I believe it is due to a combination of the nerves being sensitive anyway and most likely some psychological factors.  I mean, really, can you imagine your 'accident list' more than doubling in one year, and continually getting worse every year?  When I took this fall, leaving the gym I attend, I remember surprise (I had just been thinking that I was walking really well!), that my hands stung and was doing a mental check on making sure I was okay.  This was the first fall due to my toe catching resulting in an almost trip wire type fall, like I was a walking tree and someone had just chopped me down.  Then the tears came!  My hands HURT.  My chin was bleeding.  And WHAT was going to become of me?!  That is why I believe that a person's acceptance of their disease, injury, or what ever it may be has a lot to do with the symptoms and problems the person encounters.

Here is a web site I found, with some fairly good information on the pain that comes with MS.  MS pain   I don't know, it's hard to judge.  I believe my back pain is due to my poor posture... which is most likely due to my MS, with weak muscles, fatigue and the all over 'short circuiting' of my nerves.  My figures are always sore and I never could get someone to give me a reason why, other than 'you have MS'.    But really, is the pain that comes with MS so bad to warrant the use of drugs, say marijuana?  But, that is for another conversation.  Now, I leave you with the full poem that got me writing about my fall (though I must have been intending to share it because I made sure to have my husband to get pictures of my chin....).

Life in a Love

By Robert Browning 1812–1889 Robert Browning

Escape me?

Never—

Beloved!

While I am I, and you are you,

         So long as the world contains us both,

         Me the loving and you the loth,

While the one eludes, must the other pursue.

My life is a fault at last, I fear:

It seems too much like a fate, indeed!

Though I do my best I shall scarce succeed.

But what if I fail of my purpose here?

It is but to keep the nerves at strain,

To dry one's eyes and laugh at a fall,

And, baffled, get up and begin again,—

So the chase takes up one's life, that's all.

While, look but once from your farthest bound

At me so deep in the dust and dark,

No sooner the old hope goes to ground

Than a new one, straight to the self-same mark,

I shape me—

Ever

Removed!

 

Well, I'm doing it again, trying to 'compete' on horseback with others.  This time, it's in the 'Great Horsetrailriders Distance Derby

I've accumulated nearly 10 miles since after the beginning of this year!  Some have even broken the 200 mile mark.  Can't believe we're all out there riding in January!

My sweetie and I have been married six years now and we made sure to get out of a couple hour ride on our anniversary.

Muscle loss and gain

Can hardly believe it's been so long since I've posted.... oh wait, I can.  The Cody's now 14 months and getting more active and sleeping less during the day!

I started going to physical therapy (PT) a bit ago (2 months?!) and have gotten myself worked about up to the same physical level I was at before Cody came.  I of course chat with the therapists at the clinic most of the time I'm there and have really enjoyed picking their brains on the how, what, and whys of what I experience with the MS.  Monday was especially 'productive' and I learned something I hadn't heard before - with a person on bed rest, it takes only 4 days for the body to start losing muscle mass and atrophying.  Then, the real kicker, it takes 8 weeks to gain back what is lost if all you do is daily 'household' activities.  Of course the numbers are a little different for someone who is still active but moves to a wheelchair, like I have done most of the time to work with the baby, but it still shows how quickly we 'lose it' when we stop using it.  I haven't found quite the exact paper my therapist was telling me about, but this one is close.
http://users.hal-pc.org/~ghill/1966.html

The paper really shows the importance of trying to keep ourselves as active and fit as long as we can.

On a side note, I got a new camera for Christmas and will do my best to try and get more photos on my page.